Autism CARES Act of 2019

In The Politics of Autism, I write:

No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.

A Thursday release from Rep. Chris Smith:

Today, Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA) introduced the bipartisan Autism CARES Act of 2019 in the House to reauthorize federal programs and activities that assist children, adults and families with Autism.

The bill, HR 1058, is supported by a widespread coalition of autism and disability advocate organizations, including Autism Speaks, Autism Society of America, Association of University Centers on Disabilities, American Academy of Pediatrics, and Autism NJ. A companion bill will be introduced in the Senate by Sens. Bob Menendez (D-NJ) and Mike Enzi (R-WY).

“Our new legislation will reauthorize vital federal research on earlier interventions for children with autism and expands funding for critical research, education, housing, and other programs that assist the countless children and adults on the spectrum, and their families,” Smith said. “The bill will also help ensure that the estimated 50,000 persons with autism each year who ‘age out’ of critical assistance programs and enter adulthood are supported, as many individuals and communities are unprepared for this transition.”

“We’ve made significant progress over the last 20 years, but we are still far behind where we would like to be – and where individuals and families need us to be,” Doyle said. “The legislation we’re introducing today reauthorizes the federal government’s existing efforts, but it also increases and expands those efforts to cover underserved areas and ensure that they address individuals’ needs throughout their lives. We must continue this critical work, and I look forward to working with colleagues and stakeholders to move this bill through the legislative process.”

The Autism CARES Act of 2019, HR 1058, is a reauthorization of Smith and Doyle’s Autism CARES Act of 2014 (P.L. 113-157).

HR 1058 will authorize over $1 billion in funding for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA) over five years. At CDC, the funding will go to developmental disability surveillance and research; at HRSA, the funding will cover education, early detection and intervention; at NIH, the funding will cover the expansion and coordination of autism-related activities.

Among other actions, the legislation:

· Requires HHS to report to Congress on the progress of activities related to autism and other developmental disabilities, and the health and well-being of individuals on the autism spectrum.

· Directs NIH to conduct research targeted at improving outcomes and detection for persons with autism of all ages.

· Directs HRSA to prioritize grants for developmental-behavioral pediatricians in medically-underserved areas.

· Amends sections of the Public Health Service Act (PHSA) to reflect the need for research, surveillance, education, detection, and intervention for individuals with autism spectrum disorder of all ages, not just children.
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Measles Wildfire

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Antivax sentiment has been strong in the Pacific Northwest.

Kirk Johnson at NYT:

Measles, declared eliminated as a major public health threat in the United States almost 20 years ago, has re-emerged this winter in the Pacific Northwest and other states where parents have relatively broad leeway over whether to vaccinate their children.

Seventy-nine cases of measles have been reported by the Centers for Disease Control and Prevention since the start of this year. Fifty cases of the highly contagious disease were in Washington State.

An outbreak of measles has also occurred in the Orthodox Jewish community in Brooklyn, where 64 confirmed cases of measles were reported, mostly late last year. That outbreak began, the C.D.C. said, when a child who had not had a measles vaccination caught the virus on a visit to Israel, where a large outbreak of the disease was occurring.

Lena H. Sun and Maureen O'Hagan at Wash. Post:

The Pacific Northwest is home to some of the nation’s most vocal and organized anti-vaccination activists. That movement has helped drive down child immunizations in Washington, as well as in neighboring Oregon and Idaho, to some of the lowest rates in the country, with as many as 10.5 percent of kindergartnersstatewide in Idaho unvaccinated for measles. That is almost double the median rate nationally.

Libertarian-leaning lawmakers, meanwhile, have bowed to public pressure to relax state laws to exempt virtually any child from state vaccination requirements whose parents object. Three states allow only medical exemptions; most others also permit religious exemptions. And 17, including Washington, Oregon and Idaho, allow what they call “philosophical” exemptions, meaning virtually anyone can opt out of the requirements.

All those elements combine into a dangerous mix, spurring concern about the resurgence of a deadly diseasethat once sent tens of thousands of Americans to hospitals each year and killed an estimated 400 to 500 people, many of them young children.

“You know what keeps me up at night?” said Clark County Public Health Director Alan Melnick. “Measles is exquisitely contagious. If you have an under-vaccinated population, and you introduce a measles case into that population, it will take off like a wildfire.

Dr. Haider Warraich at Vox:

If they are effective, preventive therapies treat events that a person will never witness. So a patient who takes a statin might never experience the heart attack it prevented but might experience side effects, or simply the inconvenience of taking a medication sometimes with no perceived benefit. This is unlike treatments that are therapeutic for symptoms or obvious physical manifestations of diseases after they have developed. For example, while many patients may overstate the risks of statins, the benefits of treatments such as coronary stents, which are used to increase blood flow in blocked or narrowed arteries supplying the heart to manage heart attacks and chest pain, are frequently inflated.

Outbreaks of measles in the US, largely driven by refusal of a critical mass of parents in a community to have their children vaccinated, could be a result of this phenomenon. Rumors and fears that have taken hold of largely well-educated, concerned, and well-meaning parents, connected through online networks, are fueling the anti-vaxxer movement.

Yet perhaps the answer to this modern disease that appears to have landed straight out of a Black Mirrorepisode might also lie in the online networks that have helped foment this in the first place. A team of scientists successfully predicted the measles outbreak at Disney World in 2014 using machine learning to analyze social media posts and search engine behaviors two years in advance.

Virginia Age Cap

The Politics of Autism includes an extensive discussion of insurance.

A release from Virginia House speaker Kirk Cox:

The Virginia House of Delegates on Tuesday passed HB2577, legislation to lift the age cap for autism coverage to help approximately 10,000 Virginians get access to needed healthcare.

“This piece of legislation has been a long time coming and I am proud of the House for taking this step to guarantee those on the Autism spectrum have access to much needed healthcare,” said Speaker Kirk Cox (R-Colonial Heights). “Many of these children are not diagnosed until they are already six or seven years of age and need access to important care for longer than just three or four years.”

Currently, state law only says that health insurers must offer such coverage for individuals from age two through age 10. No other prevalent health condition including– asthma, diabetes and cancer– has coverage limits imposed based on the age of the patient. Coverage for all other health conditions is based on medical necessity.

“Children did not choose to be born with Autism and I thank my colleagues for taking this giant step towards providing treatment for those diagnosed regardless of age,” said Delegate Bob Thomas (R-Stafford), the bills patron. “As a father of eight children, I know how important it is to families to ensure their children have every opportunity for success and this legislation will help those who need care the most.”

Military Families Have a Hard Time Getting Support

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

Blue Star Families reports on its 2018 survey:

The National Council on Disability has found exceptional family members (EFM) and their families also face barriers in a variety of domains including health care. In particular, obtaining and maintaining disability-related services requires relentless hard work which can be time-consuming and overwhelming.20 EFM and their families are required to enroll into the Exceptional Family Member Program (EFMP), a program meant to provide a comprehensive and coordinated approach for community support, housing, medical, educational, and personnel services to families with special needs.21 However, EFMP enrolled military family respondents with a child with special needs reported being significantly less likely than their peers to indicate Tricare provided appropriate medical support for their family. These families were also significantly less likely to be satisfied with the support their family received from the DoD/military.

Autism as Literary Device

In The Politics of Autism, I discuss depictions of ASD in movies and books.  

Marie Myung-Ok Lee at NYT writes about books that use autism as a literary device:

I ask myself why using autism the way these books do feels wrong. As a child who was disappointed to find the only Asian characters in any book in the library to be the Japanese-American family in “Farewell to Manzanar,” I am acutely aware of the importance of feeling represented in literature. And yet, when it comes to autism appearing in literary fiction, I instinctively feel a need to protect my son from these portrayals. He’s not an Ojibwe curse, a savant or an alien. Nor is he an emotionless cipher with no inner life.

As a writer, I understand the absurdity of trying to place restrictions on what can and can’t be written about. Keats defined negative capability as an artist’s ability to transmute an experience or idea into art even if she hasn’t experienced it herself; without it, we’d have no historical fiction, no “Madame Bovary,” no “Martian Chronicles.”

The crux of the issue is that with autism there is often, not metaphorically but literally, a lack of voice, which renders the person a tabula rasa on which a writer can inscribe and project almost anything: Autism is a gift, a curse, super intelligence, mental retardation, mystical, repellent, morally edifying, a parent’s worst nightmare. As a writer, I say go ahead and write what you want. As a parent, I find this terrifying, given the way neurotypical people project false motives and feelings onto the actions of others every day.

Autism as Slur

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- including casual prejudice against disabled people.

Unfortunately, public figures around the world sometimes use autism as a slur. 

• In reaction to a nasty tweet, 50 Cent responded:  "just saw your picture fool you look autistic."
• A TV commentator said that Mitt Romney seemed to be on the spectrum.
• An Obama administration official said that Israeli prime minister Netanyahu was "Aspergery."

From the Times of Israel:

A Likud lawmaker’s suggestion that Israel Resilience party leader Benny Gantz might be “autistic” sparked an outcry by two politicians with autistic family members, as well as an autism advocacy group.

In an interview Sunday morning on Radio Darom, a station broadcasting in Israel’s south, Likud MK David Amsalem repeated a Likud campaign talking point that accuses Gantz, a former IDF chief of staff, of spending NIS 600,000 ($165,000) of state funds on the traditional send-off party for his retirement as chief of staff in 2015.
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The interviewer challenged Amsalem over the claim, noting that the chief of staff does not organize the farewell event and would not have known its cost.

“Look where you’re taking us,” Amsalem retorted, appearing to acknowledge the point, but arguing Gantz should have known. “It’s as if the chief of staff is some autistic person who isn’t interested, doesn’t understand.”

The comment drew rebuke from Alut, the Israeli Society for Autistic Children and Adults, which called it “sad and disappointing that a senior elected official permits himself to use the word ‘autistic’ as a pejorative, insulting a large population of autistic adults and children, as well as their families. Alut has worked for years to raise awareness about autism, and has significant achievements to its name. Apparently the work is not yet finished.

At Ynet News, Moran Azulay:

Yesh Atid leader MK Yair Lapid, whose daughter is autistic, slammed Amsalem. "Dudi Amsalem just said on the radio that Benny Gantz is autistic. Because being my daughter is a curse to him. Because in Amsalem's world, they always step on the weak," he wrote.

"Benny Gantz is not autistic, Mr. Amsalem," Lapid said. "There's no need to pull over on the side of the road when he flies into a rage and starts biting his mother. He doesn't steal food from others' tables at restaurants. He doesn't need to undergo dental treatments under full anesthesia. His parents are not up at night trying to figure out who would take care of him when they are old."

"I'm a politician; I'm supposed to always talk nice. Not this time. Beware of me Dudi, talk nicely about my daughter," Lapid said.

 In December, Raoul Wootliff reported at the same paper:

Prime Minister Benjamin Netanyahu’s son Yair mocked Israel Police chief Roni Alsheich, who oversaw the investigations that concluded in indictment recommendations for his father, comparing the outgoing commissioner to a mafioso and someone with autism.

“Alsheich is a cross between Tony Soprano and Rain Man,” Netanyahu Junior wrote (in Hebrew) on Facebook on Monday.

Autistic Adults Get a Lot of Psychotropic Meds

In The Politics of Autism, I discuss treatments, including medication.

At The Journal of Autism and Developmental Disorders, Amy Esler and colleagues have an article titled "Psychotropic Medication Use for Adults with Autism Spectrum Disorder who Receive Services and Supports Through Adult Developmental Disability Services in the United States."  The abstract:

Individuals with autism spectrum disorder (ASD) have higher rates of co-occurring diagnoses and use of psychotropic medication prescriptions than people with other developmental disabilities. Few studies have examined these trends in samples of people with intellectual and developmental disabilities (IDD) with and without ASD. Using a random sample of 11,947 adult IDD service users from 25 states, co-occurring diagnoses and psychotropic medication use were compared for those with and without ASD. Regardless of diagnosis, individuals with ASD had higher percentages of psychotropic medication use. Controlling for co-occurring condition, age, gender, and ID level, a diagnosis of ASD predicted number of medications used. Further research is needed to understand why individuals with ASD are prescribed more medication, more often, than similarly functioning groups of individuals without ASD.

Russians and the Antivax Movement

In The Politics of Autism, I look at the discredited notion that vaccines cause autism. Thanks to antivaccine sentiment, there are growing measles outbreaks.

Eleanor Cummins at Popular Science:

In August 2018, the American Journal of Public Health published a study analyzing the influence Russian-made fake accounts had on the anti-vaccine movement in the United States. Between July 2014 and September 2017, the authors report, Russian “trolls, sophisticated bots, and content polluters” tweeted about vaccination at higher rates than real users. Some promoted misinformation, while other fake accounts seemed intent on “sowing discord.” Inflammatory messages ranged from antagonistic tweets that seemed pro-vaccine "You can’t fix stupidity. Let them die from measles, and I’m for #vaccination” to explicitly anti-vaccine messages like “Don’t get #vaccines. Illuminati are behind it.” Together, these fake users “create[d] false equivalency, eroding public consensus on vaccination,” according to the study.

More Measles

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Antivax sentiment has been strong in the Pacific Northwest.

Kashmira Gander at Newsweek:

Some 349 cases of measles were identified across 26 states and the District of Columbia last year: The second highest levels in the U.S. since an outbreak in 2014 sickened 667 people. Last year’s bouts included the worst in New York since the 1990s, mostly affecting members of Orthodox Jewish communities and unvaccinated travelers returning from Israel.

And the issue has bled into 2019. In Clark County, Washington, a total of 38 people—including 27 children under the age of 10—have so far been affected by a measles outbreak which led its governor to declare a state of emergency to channel public funds to tackling the problem. Three unvaccinated members of the same family have been diagnosed with the disease in Atlanta, Georgia. Meanwhile, outbreaks in New York State, New York City, and New Jersey, are ongoing.

HCBS Waivers Have Positive Effects

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

Karen Goldrich Eskow, Gregory S. Chasson, Jean Ann Summers have an article at The Journal of Autism and Developmental Disorders titled "The Role of Choice and Control in the Impact of Autism Waiver Services on Family Quality of Life and Child Progress." The abstract:

Home and Community-Based Services (HCBS) Waivers provide support and services to families with a child/youth with autism spectrum disorder (ASD). Research indicates HCBS Waivers are positively related to family quality of life (FQoL) and Child Progress. This study replicated and expanded prior research using propensity score matching of 460 families. Results support prior findings that HCBS waivers have a positive impact on FQoL and aspects of child progress. This study also found that having choices in the selection of services and service providers, as well as control over day-to-day provision of services, strengthened both the child and family impacts of the Waiver services. In addition, the study provides preliminary evidence for psychometric properties of a quick and inexpensive parent-report of ASD severity 

Antivax Harm

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Antivax sentiment has been strong in the Pacific Northwest.

Molly Enking, and Natalie O'Neill at The Daily Beast:

A measles outbreak in the Pacific Northwest ballooned to 35 cases over the weekend, and officials are bracing for even high numbers in two states where parents can choose not to vaccinate their kids for personal reasons.

The affected area—Clark County, Washington, and King County, Oregon— has one of the country’s largest concentration of unvaccinated residents.

“Oregon and Washington are two of 18 states that can choose not to vaccinate because of ‘personal or philosophical’ reasons,’” Peter Hotez, a microbiologist at Baylor University who has studied anti-vaxxer hotspots, told The Daily Beast.

“The parents who chose not to vaccinate tend to be far-left or far-right politically,” he said. “It seems to be the only thing the far left and far right can agree on.”

Shelia Poole at The Atlanta Journal-Constitution:

Georgia health officials on Tuesday confirmed three cases of measles, all within the same metro Atlanta family.

No additional information was released about the family, including the ages of those affected, which county they lived in or where they could have contracted the disease.

The only information released is that none of those who fell ill had been vaccinated.

 Josh Bloom and Alex Berezow at Newsweek:

Anti-vaxxers claim that if vaccines are so effective, the unvaccinated have nothing to worry about. This is a malicious lie. No vaccine is 100% effective, and many can wear off over time. Additionally, some children cannot be vaccinated because they are either too young—the vaccine is not given before age 12 months—or too sick (for instance, immunocompromised) to receive vaccines. These children rely on the rest of us to protect them, a concept known in public health as “herd immunity.”

The purposeful misinformation that pollutes the Internet is categorically wrong; there is no valid reason whatsoever to avoid fully vaccinating your child according to the CDC’s recommended schedule.

Vaccines do not cause autism. This theory, which was spawned by a fraudulent get-rich scheme in the 1990s, has been shown repeatedly to be without any merit. Another fear, that there are “too many” vaccines, is also false. When your child crawls around on the floor licking his hands, he is exposed to far more antigens than those found in all vaccines combined. He is inadvertently “vaccinating” himself all day long.

Meghan Keneally at ABC:

Vaccines are universally backed by respected scientists and federal agencies, but that isn’t enough to convince every parent to vaccinate their children.

The decision to fly in the face of near universal scientific opinion doesn't come as a result of a lack of intellect, however, as experts who have studied vaccines and immunology acknowledge that many parents who don't vaccinate their children are well-educated.

They also appear to be the victims of a widespread misinformation campaign, the experts said.

Daniel Salmon, who is the director of the Institute of Vaccine Safety at Johns Hopkins University, said that existing research suggests that there are some common attributes that many parents who choose not to vaccinate their children share.

"They tend to be better educated. They tend to be white, and they tend to be higher income. They tend to have larger families and they tend to use complementary and alternative medicine like chiropractors and naturopaths," Salmon said.

Russia has contributed to vaccine disinformation. 

Employment Program for Adults with Disabilities

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

Unemployment among people with disabilities is down. One reason is the overall job market.  Another is the effort of companies to hire disabled people. Eric Morath at WSJ:

Like many adults with disabilities, Nathan Mort has often struggled to find and hold a job. A conservation group once declined his attempt to volunteer. The 37-year-old West Michigan native, who has a high-functioning form of autism, ended up living with his parents and dependent on government payments.

His fortunes turned several years ago when a local food distributor, Gordon Food Service, found itself short of entry-level workers and developed an internship program for adults with disabilities. Mr. Mort was hired from the program permanently to track warranty claims for the company’s trucks and other equipment. That allowed him to stop collecting federal disability benefits and move into his own home.
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The program that brought Mr. Mort to Gordon Food Service came from the company recognizing it may be missing a potential pool of candidates, said Jill Day, senior talent acquisition leader. A suggestion to work with Hope Network, a Grand Rapids, Mich., nonprofit that serves the disabled, came from staff members who had disabled family members.
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Gordon Food Service was able to tap into what some autism experts call a “splinter skill,” something an autistic person does exceptionally well. For Mr. Mort it’s the ability to process complex strings of numbers combined with being a fast typist—his hands don’t bother him on a keyboard.

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Mr. Mort’s father, Bruce, now worries less about what will happen once he and his wife are no longer able to care for their son. “It was scary for a while,” he said. “During the recession there weren’t many companies willing to give someone with autism a chance.”

Questions About Choice Programs

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.  Vouchers and charter schools are part of the ongoing debate.

COPAA Executive Director Denise Marshall at The Hill:

Last November, the National Council on Disability (NCD) published the School Choice Series (Vouchers and Charter Schools); both were officially submitted to the White House. To date, Secretary DeVos has failed to mention any of the documented findings, especially those critical to explaining the extreme variance and lack of availability of the same type; or in some cases, any choice for students with disabilities as compared to other school-age students.

For example, the NCD voucher report found that the same concerns presented in 2003 (by NCD in a prior report) continue to be critical problems in 2018. Specifically, the report highlights:

NCD found that while some families experience that private schools are able to meet the needs of children with disabilities better than public schools, parents and families using vouchers can lose access to IDEA rights; accountability can suffer; and vouchers might only cover a portion of private school cost, leaving a majority of families unable to access any choice at all.

These NCD findings are consistent with other reports for example in 2016: Private School Choice Programs Are Growing and Can Complicate Providing Certain Federally Funded Services to Eligible Students, and School Vouchers and Students with Disabilities: Examining Impact in the Name of Choice; in 2017, Private School Choice: Federal Actions Needed to Ensure Parents Are Notified About Changes in Rights for Students with Disabilities; and 2018 5 Policy Ideas to Improve Private School Voucher Programs.