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Tuesday, December 31, 2019

2019: Year of Measles

In The Politics of Autism, I look at the discredited notion that vaccines cause autism. Twitter, Facebook, and other social media platforms have helped spread this dangerous myth. Measles can kill.

The year 2019 saw a totally preventable disease claim the lives of more than 140,000 people, mostly children and babies. It happened as unvaccinated children created a pathway for measles outbreaks globally. Some of the outbreaks are still continuing.
In 2019, more 400,000 cases of measles were reported globally, with an additional 250,000 cases in the Democratic Republic of Congo alone.

In the first three months of 2019, the number of measles cases tripled over the same period of 2018. Dr. Kate O'Brien, an immunization expert with the World Health Organization, cites many reasons children are not getting vaccinated."The main reason for failure to vaccinate against measles is families, communities are not having access to the vaccine," O’Brien said.
Conflict and poor health systems in low income countries prevent families from vaccinating their children. But in rich countries, some parents are opting out of immunizations. The United States tops the list with 2.5 million children missing their first dose of the measles vaccine. Two doses are essential for immunization.

The CDC reported more than 1,200 cases of measles in 31 U.S. states by late December, the highest number in 25 years. Dr. Peter Hotez, a vaccinologist at Baylor College of Medicine, says the numbers are alarming.

"In the United States now, measles epidemics are becoming the new normal in this country, after we eliminated measles in 2000," Hotez said.

In 2019, four European countries — Britain, Albania, the Czech Republic and Greece — lost their measles eradication status, meaning measles is now considered endemic in these countries."In other words, we're backsliding," said Kate O'Brien with the WHO.

Monday, December 30, 2019

Autistic People Can Drive

In The Politics of Autism, I discuss interactions between police and autistic people.  Sometimes they occur on the road.  A number of ASD people drive cars.
The article is titled "The relation between driving errors and executive functioning in intellectually able young novice drivers with autism."  Highlights:
  • People with ASD can be considered as skilled drivers.
  • It is important to take different types of hazards into account.
  • The relation between executive functioning and driving may be different in ASD.
  • The relation between executive functioning and driving depends on the used measures.

Sunday, December 29, 2019

Samoa Lifts State of Emergency

From BBC:
Samoa has lifted a six-week state of emergency, which was put in place amid a measles epidemic that killed 81 people and infected more than 5,600.
Just 200,000 people live on the South Pacific island nation, and vaccination rates are far lower than in neighbouring countries.
Most of those killed in the outbreak were babies and young children.
Infection rates slowed earlier this month after a vaccination drive pushed immunisation rates towards 95%.
Globally, measles cases are on the rise - including in the US and Germany - as parents forego life-saving vaccines because of false, repeatedly debunked theories linking childhood immunisation with autism.
Prominent anti-vaxxer Edwin Tamasese was arrested in Samoa earlier this month and charged with incitement against a government order.

Mr Tamamese had posted false theories about measles on Facebook, and instead promoted the use of ineffective remediesEmerg to treat the deadly illness - such as using papaya leaf extract and vitamin C.

He also called the government's vaccination programme "the greatest crime against our people".

Saturday, December 28, 2019

Autism Services in Spending Bills

From Autism Speaks (h/t Gene Bensinger):
On December 20, 2019, two appropriations “minibuses” were enacted that include the funding bills for all federal departments and agencies.

This spending package includes wins for autism research and services, including
  • $2.6 billion increase for the National Institutes of Health (NIH). The bill encourages the NIH to aggressively invest in autism research consistent with the Interagency Autism Coordinating Committee (IACC) Strategic Plan, which called for a doubling in autism research spending. Specifically, it calls for “greater investment in research and collaborations focused on addressing the gaps outlined in the Strategic Plan.”
  • $168 million increase for the National Institute of Mental Health (NIMH).
  • $15 million for the Autism Research Program at the Department of Defense. This is double the level of spending than FY 2019. Since its inception in Fiscal Year 2007, about $100 million has been directed to promote innovative research designed to advance the understanding of ASD and to improve the lives of those living with autism.
  • $2 million to reduce the risk of injury or death related to the wandering characteristics of some children with autism. This funding will allow for the implementation of Kevin and Avonte’s legislation that was passed into law last year.
  • $23.1 million for autism activities at the Centers for Disease Control and Prevention (CDC). CDC’s work includes providing essential data on autism spectrum disorder (ASD) and developing resources to help identify children as early as possible.
  • $1.75 million increase to the Health Resources & Services Administration (HRSA) for autism activities, with $35.2 million of HRSA funds designated for LEND.
  • $13.9 billion for IDEA special education. This is a $417 million increase over last year.
These funding increases and focus on autism-specific programs keep us on a path toward new autism discoveries and supports.

Friday, December 27, 2019

Elizabeth Warren on Disability Issues

Elizabeth Warren has very detailed positions.

Elizabeth’s first job out of college was teaching students with speech and learning disabilities at a public school. This role reaffirmed for her how important it is to live a life of independence and dignity. She will always stand up for the policies that help make that possible for all Americans, including Americans with disabilities.
In Elizabeth’s time in the Senate, she has fought tirelessly for people with disabilities, knowing that all areas of policy affect the community. She has championed legislation to increase accessibility across employment, education, health care, community inclusion and engagement, and housing because she knows our democracy is stronger when it is reflective of all of us.
Elizabeth has always believed in the principle of equal pay for equal work, but today, it is perfectly legal for an employer to hire workers with disabilities and pay them below what they pay workers without disabilities for doing the same work. They can even apply for permission to pay workers with disabilities below the federal minimum wage. It’s a disgrace.

Individuals with disabilities should have the opportunity to reach their full potential in competitive and integrated employment settings, and they should receive fair wages for their work. For these reasons, Elizabeth has worked to end the subminimum wage, and has pressured the Department of Labor to more aggressively crack down on the abuse of 14(c) certificates. This policy enforc
es harmful and inaccurate stigmas, and we should phase it out in a responsible way.
In order to provide a path to good-paying jobs, we also need to do everything we can to ensure that all students, regardless of means or background, have access to career training. That’s why Elizabeth introduced and passed the Free Career and Technical Education for High School Students Act in order to direct federal funding streams toward reducing or eliminating out-of-pocket costs associated with Career and Technical Education programs for high school students, including students with disabilities. If classes that prepare high school students for college are free, then career training classes that prepare students to enter the workforce should also be free. And she has introduced bipartisan legislation that would expand education savings accounts to cover apprentices’ out-of-pocket costs, such as for equipment and books.
Elizabeth is a fierce advocate for high-quality education for all children. That is why she is a proud co-sponsor of the Keep Our Promise to America’s Children and Teachers Act, which would fully fund the Individuals With Disabilities Education Act and make sure education is a priority in the federal budget.

Elizabeth believes we must make sure our public education system creates opportunity for all our kids, including students with disabilities. That’s why Elizabeth passed an amendment to the Elementary and Secondary Education Act reauthorization to ensure that students with disabilities are able to use assistive technology to access assessments. It’s also why she introduced the bipartisan AIM HIGH Act to create guidelines for accessible instructional materials on college campuses. Elizabeth recognizes that many students face special obstacles to their education, and will always stand up for programs that help to level the playing field.
Elizabeth also knows that the fight for equal opportunity in education does not end in high school and believes we must make sure people with disabilities are not held down by student loan debt. That’s why she has called for something truly transformational – up to $50,000 in student loan debt cancellation for 42 million Americans. This will have a profound impact on the disability community, which has a 25% higher default rate on student loans than the rest of borrowers.

And to make sure we never have another student loan crisis, Elizabeth is also calling for universal free two-year and four-year public college and technical school. Her plan would make college truly universal – not just in theory, but in practice – by making higher education of all kinds more inclusive and available to every single American, including people with disabilities, without the need to take on debt to cover costs. Additionally, she has introduced legislation to prohibit the Treasury Department from forcing borrowers who are severely disabled from paying taxes on student loans that have been canceled, which would save them thousands of dollars.
Health care is a basic human right. That’s why Elizabeth supports Medicare for All, which would give every single person in this country a guarantee of high-quality health care and access to long-term supports and services. Elizabeth will fight to make sure Medicare for All includes robust coverage for people with disabilities and people with complex care needs – and she won’t back down when it comes to making sure high-quality health care is there for those who need it.

Elizabeth will also fight to bring down the cost of prescription drugs. Right now, Washington works great for the big pharmaceutical companies, but it’s not working for people who are trying to get a prescription filled. Elizabeth’s Affordable Drug Manufacturing Act would allow the government to manufacture a generic drug when no company is manufacturing a drug, only one or two companies is manufacturing the drug and prices are spiking, there is a shortage of the drug, or the medicine is essential and faces limited competition and high prices. She supports international reference pricing, safely importing drugs from other countries, and allowing Medicare to negotiate lower drug prices. And she will work to block anticompetitive behavior in the health care industry and crack down on a range of practices that brand-name drug manufacturers use to keep prices high.

In addition to the right to physical health care, Elizabeth believes in affordable, high-quality mental health services. Despite the widespread need for these services, many Americans are denied coverage. That’s why Elizabeth introduced the Behavioral Health Coverage Transparency Act, which would hold insurers accountable for providing adequate mental health benefits and ensure Americans receive the protections they are guaranteed by law. She has also worked to hold the Health and Human Services Department accountable for improving insurers’ compliance with mental health parity laws through an online consumer parity portal.
Additionally, Elizabeth is deeply committed to both protecting and expanding Social Security benefits, which have not nearly kept up with the rising costs of health care, housing, food, and energy, for Americans with disabilities. After shrinking budgets forced the Social Security Administration to cut thousands of jobs and close more than 60 offices, leading to outrageously long wait times that left many Americans with disabilities struggling to get their benefits, Elizabeth fought to get a $480 million increase for the agency - the first increase to its operating budget in almost a decade.
People with disabilities are often excluded from participating in their communities due to inaccessibility and lack of supports. Elizabeth realizes that removing barriers to participation is essential for people with disabilities to ensure true equality. For Elizabeth, there is no better place to start removing those barriers than in our efforts to secure our democracy.

In Elizabeth’s election security plan, she is clear that security and accessibility are not mutually exclusive. Elizabeth calls for the federal government to provide every polling location with accessible ballot machines for people with disabilities and to conduct research on how to improve voting security and accessibility for all people. In addition to calling for Election Day to be made a federal holiday, Elizabeth supports requiring a minimum of 15 early voting days to ensure that those who rely on public transit and direct support professionals, both of which could be interrupted on holidays, have ample time to vote.

Just as she knows advancements in voting security and accessibility require a federal government investment, Elizabeth also knows it takes a strong investment in medical innovation to further expand the assistive technologies available to people with disabilities. Over the past fifty years, the American system of medical innovation has transformed the health of billions of people around the world. It didn’t just appear overnight as if by magic – it is the end result of generations of huge taxpayer investments in the National Institutes of Health. That’s why Elizabeth has fought tooth and nail against cuts to the NIH budget. She has also introduced the National Biomedical Research Act and the Medical Innovation Act to restore our investments in the NIH’s cutting-edge scientific research and bring us closer to critical health care breakthroughs.

Elizabeth knows that assistive technologies only help the disability community if they are affordable. That’s why Elizabeth supports Medicare for All and why she has reached across the aisle to craft and pass bipartisan legislation guaranteeing affordable, over-the-counter hearing aids for those with mild to moderate hearing loss. And why she introduced the Audiology Patient Choice Act, a bipartisan bill that ensures people with disabilities on Medicare have access to a full range of hearing and balance health care services provided by licensed audiologists.Direct Support Professionals provide essential support to people with disabilities to help them lead meaningful, productive, and independent lives. In the United States, there is an increasing shortage of DSPs. That’s why, every year since Elizabeth entered the Senate, she has co-sponsored a resolution that recognizes the important work DSPs do and more recently called on the Department of Labor to collect data specific to DSPs. She has also cosponsored the Disability Integration Act, which would require insurance providers that cover long-term supports and services to allow people with disabilities to access home and community-based services and lead an independent life.

Ensuring that people with disabilities can live full, independent lives means we must also invest in affordable housing. Elizabeth’s proposal to confront America’s housing crisis --the American Housing and Economic Mobility Act -- would build or rehab 3.2 million new units, bringing rents down by 10%, and ensuring that people with disabilities and their caregivers can afford to live in the communities that they call home. Her planl also expands the Fair Housing Act to prohibit discrimination against people for gender identity, sexual orientation, marital status or source of income, including government assistance, or housing vouchers.
Elizabeth knows that policy is personal, and as president, she will always fight for the full inclusion of people with disabilities.
On Education:
My plan also lives up to our collective commitments to students with disabilities. The Individuals with Disabilities Education Act protects the civil rights of students with disabilities by guaranteeing their right to a free and appropriate public education. When Congress passed the original version of IDEA in 1975, it promised to cover 40% of the additional costs of educating students with disabilities.

But today, Congress is failing spectacularly in meeting that obligation. Last year, the federal government covered less than 15% of these costs. That failure has shifted the burden to states and school districts that simply can’t find the money to make up the difference. The result? Students with disabilities are denied the resources they need to fulfill their potential.

This will end under my administration. I’ll make good on the federal government’s original 40% funding promise by committing an additional $20 billion a year to IDEA grants. I will also expand IDEA funding for 3-5 year olds and for early intervention services for toddlers and infants.
I am also committed to ending discrimination against all students. My administration will strictly enforce the right of students with disabilities to a free and appropriate public education. I will push to build on Obama-era policies by writing new rules to help ensure that students of color with disabilities are treated fairly when it comes to identifying disabilities, classroom placement, services and accommodations, and discipline. I am opposed to the use of restraint and seclusion in schools, and I will push for sufficient training to ensure student, teacher, and staff safety. I will protect students’ right to be educated in the least restrictive environment. And in light of the Supreme Court’s unanimous decision in Endrew F. v. Douglas County School District, which affirmed the right of every child to have the chance to meet challenging objectives, my Department of Education will help schools and districts develop and implement ambitious individualized education programs for all students with disabilities. This includes upholding the right to a fair and appropriate public education for students in juvenile detention facilities, who are disproportionately students with disabilities.
Provide better access to career and college readiness (CCR): As President, I will enact legislation to make public two-year, four-year, and technical colleges tuition-free for all students. We must also ensure that students are able to take advantage of those opportunities and that high schools are funded and designed to prepare students for careers, college, and life. Students from low-income backgrounds are more likely than their wealthier peers to graduate high school without having taken any CCR coursework. Students with disabilities are also less likely to have the opportunity to enroll in CCR courses. I’ve fought hard in Congress to make sure high school students can access career and technical education without paying out of pocket. I’ve also proposed dramatically scaling up high-quality apprenticeship programs with a $20 billion investment that will support partnerships between high schools, community colleges, unions, and companies. I’ll work with the disability community to encourage schools to begin the development of postsecondary transition plans, as required by IDEA, earlier in a student’s school career. I’ll work with states to align high school graduation requirements with their public college admission requirements. And I’ll also direct the Department of Education to issue guidance on how schools can leverage existing federal programs to facilitate education-to-workforce preparedness.

Thursday, December 26, 2019

Tracking ABA Therapists in Florida

The Politics of Autism includes an extensive discussion of insurance and the regulation of autism service providers.
Daylina Miller at WUSF-FM:

A state pilot program that uses GPS to track therapists who serve children on the autism spectrum is so fraught with problems that providers say they are having a hard time going to appointments and getting paid. 
The program is one of many changes that state officials made after discovering Medicaid fraud among providers in the applied behavior analysis, or ABA, therapy field two years ago.

The errors included an inability to log locations because of poor cellular connectivity or lack of access to WiFi, despite assurances that the app works via satellite; inaccurate billing codes; not allowing appointments to be logged for more than an hour; Tellus saying client addresses were invalid; and appointments showing as completed for future dates that hadn’t happened yet.

Wednesday, December 25, 2019

Yang Ad

In The Politics of Autism, I discuss the issue's role in presidential campaigns.

Jonathan Easley at The Hill:
Tech entrepreneur and Democratic presidential hopeful Andrew Yang will feature his wife, Evelyn, and their young child, who has autism, in a new campaign ad, which will focus on Yang’s health care plan and his universal basic income proposal.

The ad, which is called “Caregiver,” will highlight Yang’s proposal to give everyone $1,000 a month, which he has cast as the most ambitious proposed expansion of Social Security by any of the Democrats running for the party’s presidential nomination.

“The work of so many caregivers goes unseen, whether it’s caring for parents, or staying home with young boys, one of whom has special needs,” Evelyn Yang says in the ad. “If my husband Andrew Yang is president, he’ll fight for 'Medicare for All' with mental health coverage and for $1,000 a month for every American, including caregivers, because Andrew values what we do, not just for our families, but for our nation.”

The term "special needs" is controversial in the disability community:

Tuesday, December 24, 2019

Success of the CA Vax Law

In The Politics of Autism, I look at the discredited notion that vaccines cause autism. Twitter, Facebook, and other social media platforms have helped spread this dangerous myth. Measles can kill.
Laura Kurtzman at UC San Francisco:
The first rigorously controlled study of a 2016 California law that aimed to increase childhood vaccination rates by eliminating nonmedical exemptions has found the law worked as intended, although the researchers noted a small increase in the number of medical exemptions.

The study provides definitive evidence on the success of the California law, as policymakers across the United States and around the world debate similarly strict vaccine requirements.

Vaccine hesitancy and the recent decline in vaccination rates is an increasing threat to public health and our patients,” said Nathan C. Lo, MD, PhD, a medical resident at UC San Francisco and senior author of the study, published Monday, Dec. 23, 2019, in PLOS Medicine. “Our study shows that government policy has a role to address this, and that eliminating nonmedical exemptions is an effective way of increasing vaccination coverage.”

The researchers estimated how many California children would have received a key vaccine – measles, mumps and rubella, or MMR – if the law had not gone into effect, and compared that to how many children actually were vaccinated following the law’s enactment. The comparison group was created synthetically with data from 44 other states, so that it resembled California’s demographics and trends.

The researchers did something similar at the county level, comparing overall vaccine coverage in California counties to vaccine coverage in similar counties from 16 other states. The state data covered the years 2011 to 2017 and the county data covered 2010 to 2017.

"The big strength of our study over previous analyses is that we designed a quasi-experimental study with control groups, to adjust for ongoing trends in vaccination,” said Sindiso Nyathi, a PhD candidate in the Department of Epidemiology and Population Health at Stanford University School of Medicine, who was one of the first authors on the new paper. “This makes our results more reliable.”

Both analyses showed that vaccination rates went up following the law’s enactment. MMR coverage across the state increased 3.3 percent, compared to the “synthetic” state control; nonmedical exemptions decreased by 2.4 percent; and medical exemptions increased 0.4 percent.

In the county-level analysis, overall vaccination coverage went up on average 4.3 percent, nonmedical exemptions went down 3.9 percent and medical exemptions went up 2.4 percent. The averages masked much larger changes in vaccination coverage in some counties, which ranged from a 6 percent decrease to a 26 percent increase, with the largest increases happening in counties that had the lowest vaccine coverage before the law took effect.

“We did see an increase in medical exemptions, but in absolute terms the numbers remain small – 1 to 2 percent, driven largely by a few counties – and we can expect them to remain of similar magnitude in the near term,” Lo said. “Overall vaccine coverage increased by 10 to 20 percent in the high-risk counties, far more than the increase in medical exemptions.”

These changes were enough to bring the vaccination rate to 95 percent in almost all California counties, which is high enough coverage to create so-called herd immunity, which can prevent disease from spreading among vulnerable groups, like newborns and older children who cannot receive vaccinations for various medical reasons.

“The implication of our study is the law brought about protection through herd immunity,” said Hannah Karpel, a student at New York University School of Medicine, and a first author of the paper. “Even small average increases can have a big effect.”

Authors: Sindiso Nyathi, Kristin Sainani, Yvonne Maldonado and Eran Bendavid, Stanford University School of Medicine; Hannah Karpel, New York University School of Medicine; Peter Hotez, Baylor College of Medicine; and Nathan Lo, UCSF.

Monday, December 23, 2019

Hollywood and Inclusion

In The Politics of Autism, I discuss depictions of ASD in popular culture.  

Latesha Harris at Variety:
Edward Norton, Bryan Cranston and Mark Ruffalo are among the stars who have signed an open letter calling on Hollywood executives to create more opportunities for people with disabilities.
The growing number of industry notables who have signed the letter include Academy Award winners Marlee Matlin, Peter Farrelly and Chris Cooper, as well as Glenn Close, Danny DeVito, Bobby Farrelly, Glen Mazzara, Ali Stroker, Tony Shalhoub, Jason Alexander, Tim Bagley, Marianne Leone Cooper, Willie Garson, Sammi Haney, CJ Jones, Orlando Jones (who was recently fired from “American Gods”), Ruth Madeley, RJ Mitte, Steven Weber, Danny Woodburn and Kurt Yaeger. Another signer was Norman Lear, who pioneered hiring people with disabilities when he cast Geri Jewell as a recurring character on “Facts of Life” for the 1980-84 seasons.

But in the history of the Academy Awards, among the 61 Oscar nominees and 27 winners playing characters with a disability, only two were authentically portrayed by an actor with disability. [Harold Russell and Marlee Matlin]


While many beloved characters have a disability, opportunities for actors with disabilities are virtually non-existent. In fact, research shows that 95 percent of top show characters with disabilities on TV are played by actors without disabilities. Yet it is still the norm for able-bodied actors to play characters with disabilities.

Sunday, December 22, 2019

More on the Democratic Debate

Haley Moss at Mic:
For me, hearing autism and disability mentioned in the debate was the first time I felt each of my identities was fully acknowledged. I have listened to candidates discuss women’s issues and banter about lawyers and policies — all things to which I have a connection. But this was the first time I had heard about people with disabilities.
Still, achieving the milestone of recognition is not enough. The candidates’ answers fell short in addressing the disability voting bloc and recognizing our full potential and humanity as voters, citizens, community members, family members, parents, and workers. Yang’s repeated use of “special needs” alienated disabled folks, while Warren referred to people with disabilities as “the least of thy brethren,” implying a somewhat lesser human experience.
I too took issue with Warren’s “least of thy brethren” comment, feeling disappointed by candidates echoing their perceptions that people with disabilities are weak. Regardless of how complex our needs and levels of support may be, we are no less human than others, nor should we be seen as second-class citizens.
People with disabilities are strong from facing a world that discriminates against us, objectifies us, or perceives us as less human than our nondisabled peers. We are voters, we are community leaders, employers and employees, students, family members, parents, activists, and individuals capable of different jobs and roles in all aspects of our society. If the world (including the polls), were more accessible, we would ultimately be viewed as more powerful.
Going forward, presidential candidates must acknowledge and celebrate our human value. It will only inspire the American public to do the same.
In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicate, he has little use for Americans with disabilities.