California Disparity

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

Arlene Marinez at California Health Report:

Services for children and adults with developmental disabilities are coordinated through regional centers — private, nonprofit organizations that contract with California’s Department of Developmental Services. The state’s 21 regional centers serving 240,000 children and adults act as gatekeepers to a vast array of supports, including physical therapy, speech therapy, occupational therapy and respite care, for people with developmental delays. The centers conduct developmental screenings, determine eligibility for services and coordinate care.

But the number of services provided through regional centers varies vastly from region to region, and between racial and ethnic groups. Among the most striking disparities is the amount of money regional centers spend on services for children from Spanish-speaking households compared to those from their English-speaking counterparts. A 2020 Public Counsel study of youth ages 3 to 21 living at home found that, for every $1 an English-speaking child received in fiscal year 2018-2019, a Spanish-speaking child received 82 cents — a disparity that grew 46 percent over the previous four years.

...

 A big reason for the disparity is language, advocates said. Securing services can be difficult and time consuming for any family. But English-speakers are more likely than those with no or limited English proficiency to understand how the regional center system works and to have the linguistic and economic resources to fight it.

Beyond the Cliff

In The Politics of Autism, I write:

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

 From Case Western Reserve University:

During the next 10 years, an estimated half-million individuals in the U.S. with autism spectrum disorder (ASD) are expected to transition from adolescence to adulthood, according to the Centers for Disease Control and Prevention.

That means thousands of these young adults will likely fall into a widening and potentially devastating gap in a variety of services—because they’re too old for high school, but may not qualify for Medicaid-funded services, social work researchers at Case Western Reserve University predict in a new study.

The team of researchers from the Jack, Joseph and Morton Mandel School of Applied Social Sciences interviewed 174 families from Northeast Ohio to examine the use of health, medical and social services for youth with autism—from 16 to 30 years old—and their family caregivers. The study was funded by the International Center for Autism Research and Education (ICARE) through a Mt. Sinai Health Care Foundation catalytic grant and a grant from the Mandel School.

The findings, recently published in the Journal of Autism and Developmental Disorders, show that having a Medicaid waiver and high school enrollment emerged as “the most robust and consistent” predictors of youth with autism and their families using available services.

Those services include improved job training and access to medical care, speech and occupational therapy and transportation. Autism, a neurological condition typically diagnosed by age 3, often affects a person’s communication abilities and social skills.

Having ample services available is vital, said Karen Ishler, a senior research associate at the Mandel School and the study’s lead author.

“These findings provide a snapshot of the ‘service cliff’ faced by families and highlight the need for additional research,” she said. “It reaffirms that once individuals leave high school, they are less likely to receive services. But having a Medicaid waiver provides a gateway to receiving all sorts of services.”

David Biegel, the Henry L. Zucker Professor of Social Work Practice Emeritus at the Mandel School and a co-author of the study, noted that how states administer Medicaid waivers varies widely. Ohio has been generous in some regards, he said, but other states have done better for those with autism.

“Pennsylvania, for example, has a Medicaid waiver available specifically for those with autism,” he said. “So when you apply, you don’t have to compete with individuals with other health conditions.”

Ishler said states like Ohio could take a lead role to address the issue, “but that also takes dollars and some motivation.”

That would involve finding other options for funding services, changing eligibility requirements for Medicaid waivers and reducing the wait list, the researchers said. “Autism spectrum disorder affects the entire family,” Biegel said.

“Many young people with ASD are at risk for reduced quality of life in adulthood,” he said. “Additionally, families of adolescents and young adults with ASD face all kinds of stressors—especially during those critical, post-high school transition years.”

Take, for example, finding a job. Students with autism are allowed to stay in Ohio public schools until age 22. When they finish, though, employment training and supports often dry up, according to the study.

It’s something only made more challenging by the global COVID-19 pandemic.

“I think about some of these families, about how difficult it must be at home—especially for those whose youth have complex service needs,” Ishler said.

Study participants were referred from 28 agencies and organizations across northeast Ohio. The authors also partnered with one local organization—Milestones Autism Resources, a nonprofit that provides support, evidence-based strategies and coaching to families of individuals with autism—to disseminate study findings.

Special Education Teacher Shortages 2021

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

 Scott MacFarlane, Katie Leslie and Jeff Piper at WRC-TV:

Washington, D.C.-area public schools are suffering a “critical shortage” of special education teachers as students return from the long year of virtual learning, according to a review by the News4 I-Team.

A lack of available special ed instructors has dogged school systems across the country for yearsbut now risks being exacerbated by resignations, retirements and workload increases caused by the pandemic.

A Virginia Department of Education report reviewed by the I-Team lists special education instructors at the top of its list of teacher shortages statewide.A 2018 Maryland State Department of Education report also cites a “critical shortage” of special education teachers. And just last year, the U.S. Department of Education described the shortage of special education teachers as “among the most pressing and chronic problems facing the field.”

Virginia Gordan at Michigan Radio:

The Michigan Department of Education is offering an option to help school districts deal with what State Superintendent Dr. Michael Rice calls a "critical shortage of special education teachers in many Michigan school districts."

The MDE will allow a time limited waiver that enables a district to temporarily fill a vacancy in a special education classroom with a special education teacher whose specialty area - formally called an endorsement - differs from the classroom with an open slot.

The goal is to reduce reliance on substitute teachers in special education programs.

"Allowing for some flexibility will help districts better staff their classrooms and meet the needs of our students with disabilities," said Rice in a written statement.

"We're being given the flexibility to really put people in positions who are a right fit for the position and can support our students' needs," said Abby Cypher, executive director of the Michigan Association of Administrators of Special Education.

"We had a criticial shortage of special education teachers before COVID, but now we have an even more significant shortage," said Cypher. "And this is a short term solution that allows us to utilize other special education teachers in special education classrooms, instead of substitute teachers."

In January, Diana Lambert reported at EdSource:

Due to statewide teacher shortages, many of California’s approximately 800,000 special education students are being taught by teachers who haven’t completed teacher preparation programs or have received only partial training.

There were more special education teachers with substandard credentials than in any other subject area in 2017-18, the most recent year for which data is available. About 60 percent of first-year special education teachers were working without a full special education teaching credential, according to the California Commission on Teacher Credentialing.

That year, the number of first-year special education teachers without full credentials totaled 5,196. That is the highest number in a decade, said Desiree Carver-Thomas, a researcher with the Learning Policy Institute, a research and policy organization based in Palo Alto.

 

 

Nevada GOP Antivaxxers

 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 are increasingly joining up with the anti-vaxxers and anti-science crazies.  Recent examples include a member of the House COVID subcommittee and a crackpot who is seeking the party's US Senate nomination in Ohio.  Now, Nevada:

They also argue NV gaming regulators should have no say in whether casinos should be getting their employees vaccinated. It is "unfair and illegal pressure" and creates "a hostile work environment."

I kid you not.

2/4

— Jon Ralston (@RalstonReports) May 1, 2021

Here in NV, some GOP operatives are gleeful that the state Democratic Party has been taken over by Democratic socialists. What an opportunity for '22!

Wait, though! The Mensans at @NVGOP want to have a word with them:

Hold our beers!
4/4

— Jon Ralston (@RalstonReports) May 1, 2021

SPARK, Genetics, and Autism

In The Politics of Autism, I discuss various ideas about what causes the condition. Many posts have discussed the potential correlates, risk factors, and possible causes that have been the subject of serious studies.  Genetics tops the list.

Wendy Chung at Scientific American:

Five years ago we launched SPARK ( Simons Foundation Powering Autism Research for Knowledge) to harness the power of big data by engaging hundreds of thousands of individuals with autism and their family members to participate in research. The more people who participate, the deeper and richer these data sets become, catalyzing research that is expanding our knowledge of both biology and behavior to develop more precise approaches to medical and behavioral issues.

SPARK is the world’s largest autism research study to date with over 250,000 participants, more than 100,000 of whom have provided DNA samples through the simple act of spitting in a tube. We have generated genomic data that have been de-identified and made available to qualified researchers. SPARK has itself been able to analyze 19,000 genes to find possible connections to autism; worked with 31 of the nation’s leading medical schools and autism research centers; and helped thousands of participating families enroll in nearly 100 additional autism research studies.

Genetic research has taught us that what we commonly call autism is actually a spectrum of hundreds of conditions that vary widely among adults and children. Across this spectrum, individuals share core symptoms and challenges with social interaction, restricted interests and/or repetitive behaviors.

We now know that genes play a central role in the causes of these “autisms,” which are the result of genetic changes in combination with other causes including prenatal factors. To date, research employing data science and machine learning has identified approximately 150 genes related to autism, but suggests there may be as many as 500 or more. Finding additional genes and commonalities among individuals who share similar genetic differences is crucial to advancing autism research and developing improved supports and treatments. Essentially, we will take a page from the playbook that oncologists use to treat certain types of cancer based upon their genetic signatures and apply targeted therapeutic strategies to help people with autism.

 

Note the assumption here: That the study of #autism genetics somehow made it possible for this kid to get the assistive technology they need to express themselves. Why? Do we need to run a genetic analysis before giving a kid a wheelchair? https://t.co/i6gywGZnB5 pic.twitter.com/uvxt2zEX9g

— Steve Silberman (@stevesilberman) April 30, 2021

About the Antivaxxers

 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.

 Tim Dickinson at Rolling Stone:

Today, new polling data from a survey of more that 5,000 Americans across all 50 states offers a remarkable picture of the populations that are either ill-at-ease or actively opposed to Covid vaccination. First the good news: The poll, conducted for the Public Religion Research Institute and the Interfaith Youth Core, finds that 58 percent of Americans are either already vaccinated or committed to getting their shots. Another 19 percent are in the “wait-and-see” camp wishing to see “how the COVID-19 vaccines are working for others” before getting their own.

But that leaves nearly a quarter of Americans who are vaccine resistant, saying they will only get a shot if they are mandated to do so (9 percent), or who will outright refuse a vaccine (14 percent).

The vaccine refusal population is mixed.

Unsurprisingly, vaccine refusal has extraordinarily high overlap with belief in the discredited QAnon conspiracy theory, which still has a grip on about 13 percent of the country. The poll found that 38 percent of refusers are “generally agreeable to QAnon theories” — including that the U.S. is controlled by a cabal of “Satan worshiping pedophiles who run a global sex-trafficking operation.” For more on the intersection between QAnon and the antivax movement, read Rolling Stone‘s deep-dive investigation: How the Anti-Vaxxers Got Red-Pilled.

Politically, Republicans lead the refuser pack: 23 percent say they won’t get vaccinated, compared to 13 percent of independents and 6 percent of Democrats. Among Republicans the highest resistance comes from watchers of far-right television like NewsMax and One America News Network (31 percent) or those who don’t get their news from TV at all (36 percent). FoxNews watchers are, counter-intuitively, a bit less resistant than average: 16 percent.

In an American health system riven by racism — black mothers die of childbirth complications at nearly three times the rate of their white counterparts — it’s no shock that people of color also comprise a significant percentage of vaccine refusers. The poll found that nearly one-in-five of both multiracial and Black Americans say they won’t get vaccinated, in contrast to 15 percent of whites and 11 percent of respondents classified as Hispanic. It’s interesting to note, however, that these differences largely disappear among college-educated Americans, dropping to less than 10 percent regardless of race, according to the poll.

Among religious groups, white evangelicals are significantly more likely to be vaccine refusers, with 26 percent declaring they won’t get a shot. Precisely this same percentage of white evangelicals also agree with the statement: “God always rewards those who have faith with good health and will protect them from being infected with COVID-19.” (Only religious Hispanics, both Catholics and Protestants, polled higher on this question, at 35 percent.)

Antivax Sentiment Was Rising Before the Pandemic

 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.

Eleanor Pace at King's Think Tank:

Several years prior to the pandemic arising, Professor Heidi Larson of the London School of Hygiene and Tropical Medicine (and founding director of The Vaccine Confidence Project) warned of the dangers of the spread of ‘viral misinformation’,the distrust in vaccinations that seemed to be worsening and the threat this poses to global health. In a similar vein, the World Health Organisation (WHO) named vaccine hesitancy in its top 10 threats to health in 2019. The rollout of Covid-19 vaccinations have demonstrated that these long-standing worries around vaccine hesitancy are not without basis- all manner of misinformation has surfaced online since the first vaccines were approved, along with more generalised and widespread concern that the vaccines have been ‘rushed’.

Although official information has been released in attempts to correct mistruths and alleviate concerns, claims about the vaccine inevitably spread faster and reach more people through social media than via official channels. Although regulating posts on social media is something sites such as Facebook have improved upon recently, there is arguably further to go with this and the problem may now lie more so with subtle posts influencing people’s opinions as opposed to blatant anti-vaxxers, which is much more difficult to police. In addition to social media sites like Facebook and Twitter, WhatsApp is another hotbed for misinformation- which can spread rapidly between different groups without regulation as encryption has now been put in place with concerns regarding safety being brought to light. This is especially problematic as individuals are arguably more likely to believe something forwarded directly to them by a friend. Importantly though, it is those actively spreading and endorsing misinformation we should be frustrated at, not those who have been taken in by it.

Increasingly, documentation is showing that those belonging to ethnic minority groups are less likely to take up the Covid-19 vaccine when offered it. In December, the Royal Society for Public Health conducted a poll which showed that willingness to have the Covid-19 vaccine amongst individuals from Black, Asian and minority ethnic backgrounds was only 57%, compared to 76% of the UK population as a whole. This is not a simple issue of ‘not wanting the vaccine’, but is understandably born from a longstanding lack of trust in officials and structural inequalities that minority groups are constantly faced with. Importantly, it has been pointed out that it is easy to blame those who are hesitant to receive the vaccine, rather than addressing the important systemic issues underlying this.