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Monday, September 16, 2024

Florida Vaccination Rate

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.

Ana Goñi-Lessan at the Tallahassee Democrat:

The vaccination rate of Florida kindergarteners has fallen to 90.6%, the lowest in over a decade, and concerned pediatricians say they are exhausted trying to combat anti-vax information – including from the state government.

“It's gotten difficult to manage,” said Dr. Lisa Gwynn, a Miami pediatrician and medical director for a mobile clinic that serves uninsured children.

Nearly 91% may seem high, but for highly contagious diseases like measles, for example, public health experts recommend a vaccination rate of at least 95%. Lower than that increases the risk of outbreaks of diseases that are otherwise preventable. That's especially a problem in schools, where children are in close contact with each other.

... 

Since the pandemic, vaccine hesitancy over the mRNA “jab” spread to other vaccines, pediatricians say, who add that it’s becoming difficult to practice in the state. Some refuse to take unvaccinated patients, and the ones that do accept them don’t have the capacity.

Gwynn, the past president of Florida's chapter of the American Academy of Pediatrics, has seen an increase in unvaccinated patients in the past 20 years — first with the wave of misinformation from fraudulent research about how MMR vaccines cause autism, and now with COVID-19 vaccines.


Sunday, September 15, 2024

Dr. Hotez

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

{My] greatest challenge in the public square has been countering a growing and increasingly audacious antivaccine lobby and movement. My involvement accelerated after the birth of youngest daughter Rachel, when she was diagnosed with autism and intellectual disabilities. At the time I was a junior faculty member at Yale University School of Medicine, and Rachel was diagnosed at the renowned Yale Child Study Center. At that time Ann’s parents, Don and Marcia Frifield, made frequent trips from their home in New Jersey to help us with Rachel. When Rachel was still very young girl, a paper was published in the Lancet claiming to show that 12 children who received their measles-mumps-rubella (MMR) vaccine progressed to a gastrointestinal condition associated with nonspecific colitis and intestinal lymphoid hyperplasia followed by developmental regression and pervasive developmental disorder or autism (Wakefield et al. 1998). Despite multiple epidemiological studies showing that there is no link between MMR vaccine and autism (and a retraction of the Lancet paper), the claims linking autism and childhood vaccinations persisted, eventually alleging it was thimerosal preservative, or spacing vaccines close together, or aluminum in vaccines that triggered neurodevelopmental degeneration and autism (Hotez 2018).

As a pediatric vaccine scientist and a parent of a daughter with autism and intellectual disabilities I noticed there was a vacuum or absence of senior scientists or scientific organizations defending vaccines. In response I wrote Vaccines Did Not Cause Rachel’s Autism, a book which placed me front and center in the public defense of vaccines (Fig. 10).
I found this new public role meaningful although it became daunting and even scary at times, as antivaccine activists directed their online attacks against me through intimidating emails and efforts to discredit my science or me personally on social media. I also began to be stalked at meetings where I was scheduled to speak, or eventually at my home. These threats accelerated even further during the COVID pandemic when the antivaccine movement was adopted by a major political party in the United States and I became a target from members of the U.S. Congress and other elected officials, as well as a major cable news network linked to far-right extremism. In a subsequent book, The Deadly Rise of Anti-science: A Scientist’s Warning (Johns Hopkins University Press), I reported how 200,000 Americans needlessly died because they refused a COVID vaccine during the delta and BA.1 omicron COVID waves in 2021–22 (Hotez 2023a). In this new book I detail why so many Americans refused vaccines and how they became victims of a predatory and politically motivated antivaccine disinformation campaign (Hotez 2023a). The backlash to The Deadly Rise of Anti-science book accelerated the public attacks against me online or on cable news channels from elected officials, including at least two U.S. Senators, some members of the U.S. Congress, and two U.S. Presidential candidates, as well as several Fox News anchors. Even though I point out that my intention is to save lives and not to judge individual political leanings, my highlighting the unnecessary deaths from vaccine refusal is viewed as a casus belli from the far right and those with a political agenda.

 

Fig. 10
figure 10

Left: The author’s book, Vaccines Did Not Cause Rachel’s Autism (Johns Hopkins University Press); Right: A 2023 political cartoon from Dave Whamond

Saturday, September 14, 2024

Project 2025 and IDEA

In The Politics of Autism, I write about social servicesspecial education and the Individuals with Disabilities Education Act

Buried deep inside Project 2025 is a bombshell that has gotten little attention: a radical proposal that threatens the education and future of millions of students with disabilities.

Right now, a kid with a disability such as autism can get an individualized, school-based set of services, including speech therapy, physical therapy, and occupational therapy. But under Project 2025 this set of services could go away.

You can find the proposal on page 326 of the Project 2025 transition playbook. It lays out an extreme change to the Individuals with Disabilities Education Act (IDEA): “Most IDEA funding should be converted into a no-strings formula block grant targeted at students with disabilities and distributed directly to local education agencies by Health and Human Service’s [sic] Administration for Community Living.”

That one sentence could upend lives and send students with disabilities backward a half-century.

To understand why it is so dangerous, consider the background of IDEA. This law provides federal funding for the education of children with disabilities; states that receive the funds must offer a free, appropriate public education to each eligible child. Before IDEA, public schools excluded about 1.8 million children with disabilities and gave only negligible help to millions more.

In the 49 years since the law’s passage, parents have fought for regulations and judicial rulings that shore up IDEA’s protections for their children. For instance, when a school district said that it only had to offer minimal services to an autistic student, his parents fought back. The Supreme Court agreed with them, ruling that IDEA required the district to do better than rock bottom.

Because of such advocacy, some 7.5 million students today receive individualized services. The system is far from perfect, but for many Americans, it has opened the door to fulfilling lives and productive careers. It’s good for students with disabilities, their families, and nearly every community.

Unlike the Americans with Disabilities Act, however, IDEA is not a civil rights law that applies across the board. Its requirements are conditions of federal aid — also known as “strings.”

When you cut the strings, you gut the law.

That is why the Project 2025 proposal is so reckless. This proposal doesn’t just threaten special education; it signals a broader assault on the federal protections that have safeguarded the rights of millions of vulnerable Americans for generations.

Parents have learned the hard way that they can seldom get the services their kids need unless they can cite a legal requirement — and even then, they’ve learned that relentless pressure is necessary to get their kids a fair shake.

Since 1980, the US Department of Education has overseen the implementation of IDEA. Project 2025 would shift that job to another department because it also proposes to eliminate the Department of Education. Let that sink in.

Trumpists insist the former president has nothing to do with this risky scheme. And now that people have started raising alarms about other aspects of Project 2025, he is denying any connection to it — which rings hollow with recent reporting on Trump’s embrace of Project 2025 before it was in the media spotlight.

In his denials, Trump sounds like a guilty defendant on Paternity Court.

No matter what he says about Project 2025 now, his political DNA is all over it: at least 140 people who worked in his administration also took part in drafting the document, and Trump himself was happy to rub elbows with the man behind it on at least one private jet.

Trump has not proposed any other IDEA agenda. His skimpy platform does not even mention the word disability. If Trump wins the 2024 election, Project 2025 will fill in the blanks.

Does Trump care that this proposal would endanger special education? Not likely. Trump has always despised people with disabilities. In talk show interviews, he repeatedly used the r-word — and Lordy, there are tapes. His former chief of staff confirmed last year that he did not want photographs with military amputees, complaining, “It doesn’t look good for me.” His cruel imitation of a disabled reporter became infamous during the 2016 campaign. And according to a recent account by his nephew, he has said that severely disabled people should “just die.”

Trump may dodge, deflect, and deny, but one truth is clear: his agenda lacks any compassion for the millions of students with disabilities for whom IDEA is a key contributor to supporting their education and their future.

Friday, September 13, 2024

Health Misinformation, RFK, and Trump

 In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread   Examples include measlesCOVID, flu, and polio.

number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen."

He recently ran for president as an independent and has now endorsed Trump.  If Trump wins, RFK could get a major job in the administration.

Even though Robert F. Kennedy Jr. ended his presidential bid in August, he appears to be as busy as ever—but now, on the campaign trail for former President Donald Trump, where he’s modified the MAGA slogan to MAHA: Make America Healthy Again. Trump has picked up some of Kennedy’s favorite lines, as well: At a recent event, where Kennedy was a featured speaker, Trump bemoaned the epidemic of chronic illness in the United States, which Kennedy long has said he believes is caused by vaccines, toxins in food, and overreliance on medication. Kennedy would be included in a presidential panel, Trump promised supporters, that would focus on “the decades-long increase in chronic health problems, including autoimmune disorders, autism, obesity, infertility and many more.”
By adopting these talking points and embracing the failed third-party candidate, Trump is making a bid for a much-coveted group of crossover voters. Over his years as an environmental activist and then an anti-vaccine crusader, Kennedy has built up a vast network of allies in the political gray zone where far-left natural health enthusiasts meet libertarian-leaning independents and Republicans who rail against government overreach. In a race that is predicted to be won on razor-thin margins, Trump needs all the voters from that left-meets-right zone that he can get. Kennedy is expected to woo a small but meaningful number of them to team Trump—especially if he succeeds in getting his name removed from the ballots in the two swing states of Michigan and Wisconsin.

One emissary from this political gray area is Zen Honeycutt, the founder and executive director of the anti-GMO organization Moms Across America. In a wide-ranging conversation with Mother Jones this week, Honeycutt described her years of work with Kennedy, and what she sees as a sea change in the political leanings of her group’s core followers in the 13 years since she founded Moms Across America. A decade ago, the group attracted a predominantly left-leaning audience who were concerned mostly about toxins in food and what they saw as the dangerous unknowns of genetically modified organisms. But now, the group appeals to many Independents and Republicans who worry more about government overreach.
...

Honeycutt founded Moms Across America in 2011 as a group to oppose genetically modified ingredients in food, which she considered to be potentially dangerous to both human health and the environment. But in the years since, she has weighed in on myriad other health issues, such as staunchly opposing childhood vaccine requirements. She believes, that the shot that protects against measles, mumps, and rubella contains GMOs and traces of pesticides, and that it causes autism. (The theory that vaccines cause autism has been widely debunked.)

Thursday, September 12, 2024

Disability Innovation Fund

IThe Politics of Autism, I discuss the employment of adults with autism and other disabilitiesMany posts have discussed programs to provide them with training and experience.  

A release from the US Department of Education:

The U.S. Department of Education (Department) today awarded $251 million to 27 grantees across the country who are working to ensure individuals with disabilities have access to in-demand, good-paying jobs of the 21st century. These five-year grants, under the Disability Innovation Fund (DIF) program, will continue to promote competitive, integrated employment (CIE) so that youth and adults with disabilities are paid real wages for real jobs, while creating pathways to some of today’s most in-demand fields.

“Today, more than 60 million adults live with a disability – each with unique talents and strengths. In our 21st century economy, we must provide more opportunities for these individuals to achieve their goals for competitive integrated employment, independence, and economic self-sufficiency,” said U.S. Secretary of Education Miguel Cardona. “Through the Disability Innovation Fund and today’s announcement, we’ll make progress to overcome historic barriers to employment, while ensuring the varied needs, preferences, and goals of individuals with disabilities remain at the center of our vision for a strong, inclusive workforce.”

The Rehabilitation Services Administration (RSA) in the Office of Special Education and Rehabilitative Services (OSERS) received more than 200 applications in response to its notice inviting applications. Applications focused on one of the following topics:
  • Broadening access to advanced technology careers and creating a 21st century workforce of youth and/or adults with disabilities leading to CIE;
  • Innovative applications of advanced technology to support youth and/or adults with disabilities leading to CIE;
  • Justice involved youth with disabilities, including early intervention and reintegration from the juvenile justice system to the community, leading to CIE;
  • Early intervention and workforce reintegration strategies for youth and/or adults with acquired disabilities that lead to CIE;
  • Early intervention and workforce reintegration strategies for disconnected youth and/or disconnected adults with disabilities that lead to CIE; and
  • Field initiated, under which applicants address innovative topic areas not otherwise included in this priority, or combine two or more topic areas into one application.
Grant recipients will develop, implement, evaluate, refine, and disseminate new or substantially improved model strategies or programs to transition youth and adults with disabilities to CIE. Additionally, the grant recipients should design the model demonstration projects for easy adoption by others.

Recipients come from 16 states, the District of Columbia and the Commonwealth of the Northern Marianas Islands, and they represent 13 institutions of higher education, nine nonprofits, four state agencies, and one institution of higher education/special institution.

 


Wednesday, September 11, 2024

Medicaid Reimbursement Rates

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Morgan Gonzales at Behavioral Health Business:

Medicaid reimbursement rates are largely trending upward for autism therapy providers, but burdensome regulations still pose significant hurdles to growth.

To overcome these challenges and improve rates, all players in the autism therapy industry, including private equity firms, must become involved in advocacy work, industry insiders said at the Behavioral Health Business Autism & Addiction Treatment Forum.

“No margin, no mission,” Darren Patz, partner of government affairs and public policy at international law firm DLA Piper, said at the event. “You get the rates, and everything can flow from that.”


Medicaid reimbursement for services performed by registered behavior technicians (RBTs) and board-certified behavior analysts (BCBAs) is relatively new, according to Patz, so states are still in the process of determining rates.
...

Private equity-backed ABA providers must also join advocacy efforts, Patz said. Group advocacy work also provides a platform for providers to share best practices, he added.

Private equity has played an increasingly prominent role in autism therapy dealmaking. Private equity firms completed 85% of all M&A between 2017 and 2022, according to research. The federal government has also increasingly scrutinized private equity activity in behavioral health, launching a probe into private equity’s role in health care in March.

Tuesday, September 10, 2024

Autism CARES Reauthorization


Background:

The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, first enacted in 2006 and signed into law by President George W. Bush, represents a landmark in coordinated federal efforts to address the increasing prevalence of Autism. With the Centers for Disease Control and Prevention (CDC) now reporting that approximately 1 in 36 kids are diagnosed with Autism and 4.5 million adults in America have Autism, the need for a comprehensive approach to Autism has never been more critical. The Autism CARES Act has established crucial programs and committees, including the Interagency Autism Coordinating Committee (IACC) and various initiatives across the Department of Health and Human Services (HHS), aimed at enhancing our understanding and management of Autism.

See our blog to learn more about how this law impacts families and those with Autism.

Issues:

Despite significant advancements in Autism research and services, the rising diagnosis rates underscore the ongoing urgency to bolster federal response. The Autism CARES Act, reauthorized last in 2019, faces a sunset deadline of September 30th, 2024. Without timely reauthorization, the future of these essential programs and the progress they represent is at risk.

Members of Congress must act swiftly to reauthorize and enhance the Autism CARES Act. The continuation and expansion of these programs are not just a matter of policy but a necessity for the countless individuals and families affected by Autism. Together, we can ensure a future where every person with Autism has the opportunity to lead a fulfilling and supported life.


Your Voice Matters:

The House Energy and Commerce Committee unanimously approved the bill on June 12th. The Senate HELP Committee also passed the Autism CARES Act out of committee on a vote of 20-1 on July 31st. The bills will next be considered on the House and Senate floors, likely in early September. Please use this Action Alert to easily message your Members of Congress asking for their support. Your advocacy can make a difference in the lives of millions.

*The template letters are based on your address. Please enter your address to finish sending the Action Alert.*


Monday, September 9, 2024

Estimate of ASD Prevalence

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence.

BRIEF RESEARCH REPORT article
Front. Psychiatry
Sec. Autism
Volume 15 - 2024 | doi: 10.3389/fpsyt.2024.1471969
The National Health Interview Survey (NHIS) is a comprehensive health survey conducted by the National Center for Health Statistics (NCHS) in the U.S., providing valuable insights into the health status of the population. This study focuses on the NHIS child survey between 2019 and 2021, exploring developmental disabilities in U.S. children, including autism spectrum disorder (ASD), attention deficit/hyperactivity disorder or attention-deficit disorder (ADHD/ADD), intellectual disability (ID), other developmental delay (other DD), and learning disability (LD).Objective: Leveraging NHIS data, our primary objective is to investigate the latest trends and disparities in the prevalence of developmental disabilities among various racial-ethnic groups.Methods: Employing a repeated cross-sectional design, we analyzed NHIS data from 2019 to 2021, focusing on children aged 3-17. The survey employed a meticulous stratified multi-stage sampling design. We utilized SAS version 9.4 for data analysis, calculating race-ethnicity-specific prevalence rates and employing weighted linear regression and the Rao-Scott chi-square test for trend analysis.Results: Among 19,490 children, prevalence rates varied: ASD (3.11%), ADHD/ADD (9.50%), ID (1.85%), other DD (5.66%), and LD (7.49%). Non-Hispanic black children exhibited higher rates of ID and LD, while non-Hispanic white children had the highest ADHD/ADD prevalence. Disparities persisted across sociodemographic subgroups, with variations in prevalence rates.Our study reveals an increase in ASD prevalence and persistent disparities among racial-ethnic groups.Non-Hispanic black children face elevated risks of ID and LD, while non-Hispanic white children exhibit higher rates of ADHD/ADD.

Sunday, September 8, 2024

More on Fred Trump

In The Politics of Autism, I discuss the issue's role in presidential campaigns. In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism. He also has a bad record on disability issues more generally He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

At The Independent, Sheila Flynn talks to Fred Trump:
“How could one human being say that about another human being, least of all his grand-nephew?” an incredulous Fred asks The Independent. “ I don’t know where that cruelty comes from, that deep, horrible cruelty … forget about William being my son, he was their brother’s grandson.”

Trump, in a typical statement highlighting his contributions to William’s fund, literally used the words “this is the thanks I get” after Fred went public. His son Eric also defended him.

“They never disputed that he said that, by the way,” Fred tells The Independent.

He’s made peace with sacrificing any future salvaging of their relationships if it means he can shine a spotlight on the needs of the disabled: better training for medical staff, better housing options, better pay for caregivers whose compensation, he writes, is too often “demeaning.”

“I have a national platform,” Fred says. “And I don’t mean to call people with disabilities the underdog, but, in many cases … these are people that are voiceless.

“There’s nobody out there just shouting from the rooftops, if you will, saying this needs to be done.”

He’s hopeful that Trump’s attitude towards the disabled – including those within his own family – might reveal his alleged true colors for some voters, though he’s fully aware of Trump’s inexplicably teflon history.

Saturday, September 7, 2024

MERT

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

Corinne Purtill at LAT:
Like many families with children on the autism spectrum, Jake’s parents sought treatments beyond traditional speech and behavioral therapies.

One that seemed promising was magnetic e-resonance therapy, or MERT, a magnetic brain stimulation therapy trademarked in 2016 by a Newport Beach-based company called Wave Neuroscience.
...

MERT is Wave’s trademarked version of a therapy called transcranial magnetic stimulation. The product of decades of research, TMS is approved by the FDA to treat major depression, obsessive-compulsive disorder and cigarette addiction.
...

Multiple researchers are currently examining whether TMS could improve certain symptoms of autism. But eight researchers interviewed for this article said there isn’t yet enough evidence to recommend TMS as an autism therapy, or to say with confidence that it works for that condition.
Lindsay Oberman, director of the Neurostimulation Research Program at the National Institute of Mental Health, published a paper last year summarizing the current state of research on TMS and autistic children. Nearly all published studies on the treatment to date have been very small, open-label (meaning both patients and providers knew what treatment they were receiving) or focused on a very specific subgroup, she and her co-authors wrote.

Without large, randomized controlled trials — the gold standard in medicine — “broad off-label use of these techniques in this population is not supported by currently available evidence,” the paper concluded,

Friday, September 6, 2024

Waiting in Texas

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

Faith Braverman at KPRC-TV:
The Handley family proposed a bill in the last Texas legislative session that would require school districts to refer students with disabilities to their Local Intellectual and Developmental Disability Authority (LIDDA) the moment they are diagnosed.

Doing so would ensure families are notified about Medicaid Waiver Programs and the services and support available to special needs families at the time of a child’s diagnosis, and for more waiver slots to open up so families can get the help they need.

Carey Nelson Handley and her husband Boyd said they were not aware of the lists until their daughter Caytlin was 14-years-old. She is still waiting for services at age 30.

“We want families to be knowledgeable about what services and supports are available to their children with special needs as they go through life. The Handley bill was started because we have actually been on what’s called the Medicaid waiver Interest Lists for 16 and a half years,” Handley said.

Medicaid home and community-based services (HCBS) provide opportunities for people to receive cost-effective, long-term services and supports in their own home, rather than in an institutional setting, allowing them to live and work in their community.
...

Most of these programs have a 15 to 20 year waiting list, and the Handley family have been working with non-profit group The Arc of Texas to address this issue.

According to the Kaiser Family Foundation, Texas is one of six states that don’t pre-qualify people before adding them to the lists, which causes a huge disparity in the waiting times for services.

Handley believes there’s a push for institutionalization in Texas, rather than supporting families who choose to keep their loved ones at home.
...
The Handley Law Office is dedicated to making sure other special needs families have the resources to know what they legally need to do to take care of their loved ones, now and in the future. This dedication was taken all the way to the Texas State Capitol building, where the Handley’s testified for House Bill 4716, also known as “the Handley bill.”

Thursday, September 5, 2024

SEARCH WATER FIRST: Autism and Drowning

The Politics of Autism discusses the dangers facing autistic people, including wandering.

 Patricia Davis at the National Center for Missing and Exploited Children

There’s been a dramatic spike in drownings of children with autism this summer, with three more kids drowning just this week, raising the total to 26 children.

“It’s been the worst summer on record for autism and wandering in terms of fatalities,” said Lori Mcllwain, co-founder of the National Autism Association (NAA), whose son has autism. “We’re trying to get the word out to parents to be extra vigilant. We usually see two or three deaths per month on average. Now we’re seeing two or three a week.”

Today, in conjunction with NAA, the National Center for Missing & Exploited Children (NCMEC), is releasing an urgent alert to remind the public and first responders to SEARCH WATER FIRST when a child with autism is missing. Children with autism often wander, or bolt, from safe environments and many are drawn to water.

John Bischoff, who oversees our Missing Children Division, said NCMEC knew we had to do something more when we saw this shocking increase.

“We want to urge people to be more vigilant,” Bischoff said. “It’s important that everyone understands what to do in these fast-moving situations, not just the families of these children. You could save a life.”

 Michael Cuglietta, Orlando Sentinel:

Children with autism are especially susceptible to the risk of drowning, as they tend both to wander away and to be attracted to water, experts say. That has led advocates to push for specialized swim lessons attuned to those kids’ situations, but much more needs to be done.

So far this year, 23 children with autism have died by drowning in Florida, including six in Central Florida, according to the Florida Department of Children and Families. Those deaths account for nearly 30% of the 81 such deaths reported in 2024 in Florida, which leads the nation in childhood drowning.

 

Wednesday, September 4, 2024

Justice Jackson's Daughter

In The Politics of Autism, I write about the everyday struggles facing autistic people

At CNN, John Fritze and Lauren del Valle report on a new memoir by Justice Ketanji Brown Jackson:
Jackson writes at length about her older daughter, Talia, who is academically gifted but who sometimes struggled with social interactions and transitions at school. After years of navigating what Jackson describes as “outright trauma,” her daughter was diagnosed with autism.

“There is no use in pretending that we weren’t completely devastated by the long-overdue confirmation of what I had suspected all along: that our older child was on the autism spectrum,” Jackson writes. At the same time, Jackson described the news as something of a relief.

“We could end our denial,” she writes.

“As Talia learned to advocate for herself through the years, she would educate us about how she was not ‘a person with autism’ but, rather, was autistic – by which she meant that her autism was an identity as much as her being Black and female,” Jackson writes. “Autism was another lens through which she engaged the world, with full awareness of her strengths and mindful of her trials.”

Tuesday, September 3, 2024

The Subminimum Wage Is Problematic

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

The subminimum wage is a good example of policy failure. Amanda Morris, Caitlin Gilbert and Jacqueline Alemany at WP:

  • Federal rules state that 14(c) employers must help disabled workers move on to higher-paying jobs, but many never leave the program. In 2022, just 0.5 percent of 14(c) workers were referred by their employers to vocational rehabilitation services, the main pathway for them to leave the program, according to data from the Rehabilitation Services Administration for 35 state agencies.
  • When states have ended 14(c) subminimum wage programs, overall employment of adults with cognitive disabilities has increased. A Post analysis of eight states that ended their programs before 2022 showed that employment rates for adults with cognitive disabilities increased by at least 14 percent after state programs were canceled, when adjusted for overall employment rate growth.
  • About one in three current 14(c) employers have failed to correctly pay wages, but that is probably an undercount because few are investigated each year. Between October 2009 and September 2023, the Labor Department ordered employers to pay $20.2 million in back wages for pay and other violations.
...
Oversight of different aspects of the 14(c) program is fragmented between four federal agencies — the departments of Labor, Education, Justice, and Health and Human Services. However, no federal agency is in charge of making sure individuals move from 14(c) programs into community employment. A stream of government reports over three decades have called for additional oversight of the program or ending it entirely. In a 2020 report, the U.S. Commission on Civil Rights wrote that the 14(c) system was “rife with abuse,” with respect to wages, and found that workers were not getting the support they needed to move on into community jobs.

A 2023 report from the Government Accountability Office surveyed wage data from 2019 to 2021 and found that workers were typically making about $3.50 per hour, compared with a federal minimum wage of $7.25. About 12 percent made hourly wages of less than a dollar

Only about 2 percent of workers fully transitioned out of 14(c) jobs into a competitive, integrated job, according to August 2021 data from the same agency.

Monday, September 2, 2024

Back-to-School Measles

 In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread   Examples include measlesCOVID, flu, and polio.

CDC:

As of August 29, 2024, a total of 236 measles cases were reported by 29 jurisdictions: Arizona, California, District of Columbia, Florida, Georgia, Idaho, Illinois, Indiana, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Missouri, New Hampshire, New Jersey, New Mexico, New York City, New York State, Ohio, Oklahoma, Oregon, Pennsylvania, South Dakota, Vermont, Virginia, Washington, Wisconsin and West Virginia.

There have been 13 outbreaks (defined as 3 or more related cases) reported in 2024, and 69% of cases (163 of 236) are outbreak-associated. For comparison, 4 outbreaks were reported during 2023 and 49% of cases (29 of 59) were outbreak-associated.

 Sheila Mulrooney Eldred at Minnesota Public Radio:

A measles outbreak that began in May in Minnesota has spread to 30 people, primarily infecting children in the Somali community. One dugsi, or Islamic religious school, has voluntarily closed in order to curtail the spread, according to the Minnesota Department of Health.

About a third of the patients have required hospitalization, a state spokesperson said. All but one were unvaccinated.

The outbreak brings the state to 36 measles cases this year.

Measles is endemic in many countries, including African countries that Minnesota’s Somali families visit in the summer months. Seven people contracted the respiratory virus from travel, state health officials said.

“So when people who didn’t vaccinate and then travel outside of the country where measles is still existing, they contract it and then it spreads here because we have a close-knit community with big families,” said Sheikh Yusuf Abdulle, executive director of Islamic Association of North America. He has requested that people attending this weekend’s annual convention consider their vaccination status before attending.

“We’re concerned because 36 is a big number,” said Sheyanga Beecher, a certified nurse practitioner in pediatrics at HCMC and medical director of Hennepin Healthcare Mobile Health. “And, school’s around the corner. It’s been spreading a lot in child care centers, areas where people congregate. And next week kids are going to be congregating on buses, in classrooms, in hallways … so it has the potential to increase.”
Meira Gebel and Tina Reed at Axios Portland:
Oregon's recent measles outbreak — one of the largest in the state's history — is refocusing attention on declining childhood vaccination rates as kids head back to school.

Why it matters: Oregon has one of the highest vaccine exemption rates for kindergartners in the country, according to the Centers for Disease Control and Prevention.Studies have found an increased risk of infection from vaccine-preventable diseases, such as measles, which is potentially fatal, among exempt children.

Threat level: There have been 30 confirmed cases of measles in Oregon as of Wednesday, all among unvaccinated individuals. A dozen of those cases are in children under age 10.

Sarah Boden at Spotlight PA:

Preventing the resurgence of measles and other childhood illnesses, like polio, requires nearly universal vaccinations, which isn’t the case in Pennsylvania. During the 2019-2020 school year, the kindergarten vaccination rate for measles was 96.4%, according to data analyzed by the state Department of Health. In 2022-2023, that rate dropped to 94%. If the number of unvaccinated kids creeps further upward, Pennsylvania could face a public health crisis that is entirely avoidable.

 

Sunday, September 1, 2024

A Job for RFK?

 In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread   Examples include measlesCOVID, flu, and polio.

number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen."

He recently ran for president as an independent and has now endorsed Trump.

Alejandra O’Connell-Domenech at The Hill:

Health experts are worried about Robert F. Kennedy Jr. could influence former President Trump’s public health policies in a second term, after the prominent anti-vaccine advocate suspended his independent campaign for president and jumped aboard Trump’s.

Upon announcing the move last week, Kennedy said Trump had “asked to enlist me in his administration.” Kennedy’s former running mate, Nicole Shanahan, said earlier this month Kennedy would do an “incredible job” as secretary of health and human services.

...

Trump’s son, Donald Trump Jr., told conservative radio host Glenn Beck this month he would support Kennedy taking over a government agency to “blow it up.”

And this is exactly what many health experts fear would happen to a public health agency — like the Centers for Disease Control and Prevention or the National Institutes of Health — with Kennedy at the helm.

“From a health perspective this would be nothing short of chaos,” said Robert Murphy, a professor of infectious disease at Northwestern University Feinberg School of Medicine.

“He’s proven himself to be a dangerous fanatic who doesn’t have a science background and who doesn’t believe in science.”

“We’re in a lot of trouble if he has any role, any leadership position related to many things, but health in particular,” he added.

...


“The notion that RFK Jr. would have any say in who’s selected [to be part of Trump’s administration] is very worrisome to me and many of my colleagues in public health,” W. Ian Lipkin, the director of the Center for Infection and Immunity at Columbia University Mailman School of Public Health, told The Hill.

“Many of us are old enough to remember what happened before there was a polio vaccine or a measles vaccine…there were millions of children that were adversely impacted due to the lack of protection from these types of diseases,” said Lipkin.