Search This Blog

Tuesday, April 30, 2019


From January 1 to April 26, 2019, 704** individual cases of measles have been confirmed in 22 states. This is an increase of 78 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1994 and since measles was declared eliminated in 2000.
The states that have reported cases to CDC are Arizona, California, Colorado, Connecticut, Florida, Georgia, Illinois, Indiana, Iowa, Kentucky, Maryland, Massachusetts, Michigan, Missouri, Nevada, New Hampshire, New Jersey, New York, Oregon, Texas, Tennessee, and Washington.
Trends in Measles Cases: 2010-2019

Monday, April 29, 2019

Parent Survey

In The Politics of Autism, I write that autism parents must be advocates for their children, who in turn must grow up to beadvocates for themselves.
Very quickly, parents will learn that there is no one-stop shopping in the autism world.  Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape.  “Trying to obtain services for a special-needs child is a never-ending process,” one mother told a Tennessee journalist. “Taking care of the children is much simpler than taking care of the paperwork.”  

A release from Centria Autism:
A nationwide survey of 1,000 parents of children with autism spectrum disorder (ASD) ages 10 years or younger found that on average, there is at least a 15-month delay between the time parents first suspected a developmental issue and the onset of treatment. Such delays result in lost treatment opportunity which can negatively impact a child's overall development.1 Shockingly, when 32% of parents sought treatment, they were told their child would outgrow it, further delaying access to instrumental treatment. The nationwide survey was commissioned by Centria Autism, a leading provider of therapy based on the principles of Applied Behavior Analysis (ABA) for children with ASD, and was conducted by Wakefield Research.2...
ASD is an urgent public health priority in the U.S. As of 2018, an estimated 1 in 59 children have been identified with ASD.3 Of the 3.8 million children born in the U.S. in 2017, between 65,000 and 70,000 are expected to meet the diagnostic criteria for ASD in 2019.4

The inaugural survey, called the Centria Autism Barometer, also exposed unmet needs in providing evidence-based approaches and treatment for children with ASD, parental concern surrounding how others view their child, and the impact on a parent's career and personal life. Additional key findings include:
  • Eight medical visits to diagnose: Parents reported taking an average of 8.3 medical visits before their child was officially diagnosed, with more than half of parents (57%) noting that the diagnosis process was difficult, and 84% saying it was stressful.
  • Overwhelming concern on how society treats & views ASD children: 92% of parents who have children with ASD are concerned with how other children treat their child. 84% are concerned about how the public views their child, and 80% are concerned with how teachers treat their child.
  • Autism therapy is like having an extra part-time job for parents: On average, parents spend 20 hours a week on their child's ASD treatment, and 86% wish there was a person they could turn to help them coordinate their child's treatment and care.
Applied Behavior Analysis (ABA) therapy is the standard-of-care, preferred treatment for ASD, and is the only evidence-based behavioral therapy proven to treat the core symptoms of ASD or ASD-related disabilities and to support long-term outcomes. ABA therapy can be adapted to meet the needs of each unique person and breaks down everyday tasks into easy-to-follow steps, using positive reinforcement and repetition. Yet, pediatricians are less likely to recommend ABA therapy (69%) than occupational/physical therapy (88%) or speech therapy (90%) due to lack of familiarity with ABA and the requirements for the treatment plan.5

1 Baio J, Wiggins L, Christensen DL, et al. Prevalence of autism spectrum disorder among children aged 8 years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Sums. 2018;67(6):1-23. (CDC prevalence estimates are for 4 years prior to the report date.)
2 The Centria Autism Survey was conducted online by Wakefield Research among 1,000 parents of children 10 and younger with Autism Spectrum Disorder between February 28 and March 14, 2019. The margin of error was +/- 3.1%.
3 "Autism Spectrum Disorder (ASD)." Centers for Disease Control and Prevention, 15 Nov. 2018,
4 "Autism Spectrum Disorder (ASD)." Centers for Disease Control and Prevention, 15 Nov. 2018,
5 MedPanel U.S. Pediatrician ABA Survey Final Report. April 24, 2018.

Sunday, April 28, 2019

Special Education Differences Among States

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

The Government Accountability Office has a report titled "Varied State Criteria May Contribute to Differences in Percentages of Children Served."

The Summary
Differences in states’ eligibility criteria and the difficulty of identifying and evaluating some children suspected of having disabilities may contribute to differences in the percentages of children receiving special education services across states. The Individuals with Disabilities Education Act (IDEA), the primary federal special education law, requires states to have policies and procedures in place to ensure that all children with disabilities residing in the state who need special education services are identified, located, and evaluated. These policies and procedures—known as “Child Find”—are generally implemented by local school districts (see fig.). IDEA gives states some latitude in setting eligibility criteria and defining disability categories. In addition, states may determine their own processes for identifying and evaluating children. As a result, a child eligible for services in one state might be ineligible in another. According to advocates, special education subject matter specialists, and state and local officials GAO interviewed, a number of challenges related to correctly identifying and evaluating children suspected of having a disability can affect eligibility decisions. For example, school district officials in all four states GAO visited cited challenges in properly identifying and evaluating English Learner students, as districts do not always have staff who are conversant in a child’s first language and skilled in distinguishing language proficiency from disabilities

Saturday, April 27, 2019

Trump and Vaccines

Yesterday, Trump took questions from reporters before borading Marine One.
Q Mr. President, measles cases are increasing. What do you tell parents?
THE PRESIDENT: Speak. Up, up. You got a heli- —
 What do you tell parents about getting their kids vaccinated?
Q Measles.
THE PRESIDENT: Oh. They have to get the shot. The vaccinations are so important. This is really going around now. They have to get their shot.
The comments were Trump's first on vaccines since taking office.  Some reports indicate that it was a shift for Trump, but in the past, he claimed to be "totally pro-vaccine" even as he was pushing the dangerous lie that combination vaccines cause autism. (Antivax nuts such as Rep. Bill Posey also claim to be "pro-vaccine.')    He has never retracted his comments on vaccines and autism, and he did not do so yesterday.

Friday, April 26, 2019

California Measles

Carrying babies, pushing strollers, holding the hands of their youngsters, angry parents turned out by the hundreds in Sacramento on Wednesday at a Senate Health Committee hearing to protest the bill. One by one, for more than four hours, they stated their objections.

Some took a moment to vilify [state senator Richard] Pan, who also led the 2015 battle to end religious exemptions.

“They’re my kids, they’re not your guinea pigs,” said one father.

“Shame on you,” said a mom holding a “Pan lies” sign.

“You’re a tyrant,” said a man who described himself as the father of a “a healthy, fully unvaccinated child.”

“Sen. Pan, I believe you are committing crimes against humanity,” said a Bay Area mom.

Pan stood at a lectern, listening respectfully, as he was accused of violating the Nuremberg Code, the U.S. Constitution and of imperiling his mortal soul.
Young adults who were not vaccinated as children may be at particular risk because they were too old to be affected by California’s 2015 law. Their parents were probably influenced by the discredited work of Andrew Wakefield, the British physician whose license to practice medicine was revoked after he alleged a link between vaccines and autism in the late 1990s.

Vaccines do not cause autism. This is a fact.
The antivaxxers have helped bring measles back to California.

Soumya Karlamangla at the Los Angeles Times:
Trying to stop a measles outbreak from spreading, health officials announced Thursday that more than 200 students and staff members at UCLA and Cal State L.A. who have been exposed to measles are being asked to stay home.

The five people diagnosed with measles so far in L.A. County this year include a UCLA student and a Cal State L.A. student. Concerned about the quick spread of disease on busy college campuses, health officials have ordered that students and staff exposed to measles who cannot show they have been vaccinated be quarantined until further notice.

The announcement comes on the same day California health officials said 38 people had been infected with measles so far this year in the state, an increase of 15 from the previous week. Measles has been spiking nationwide this year, with 695 cases in 22 states reported so far, the most in the U.S. since 2000.

While the largest outbreak in California is in Butte County in the northern part of the state, health officials also declared outbreaks in Los Angeles and in Sacramento County this week.

County health workers reached out to more than 500 people who may have come into contact with the UCLA student in early April. As of Thursday afternoon, 79 of those students and faculty members had not provided medical records showing that they are immune to measles, according to a statement from the university

Thursday, April 25, 2019

California Bill to Strengthen Oversight Vaccine Exemptions

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

Despite vocal protests from antivaxxers, The California State Senate Health Committee approved important legislation.  From AP:

California state health officials grapple with containing the outbreak of measles, Senate Bill 276, authored by Dr. Richard Pan, a pediatrician and state senator representing the Sacramento region and Assemblywoman Lorena Gonzalez, representing the San Diego area, was passed by the Senate Health Committee. SB 276 will strengthen oversight of the medial exemption process, which some doctors in the state are abusing by selling medical exemptions to parents.
Medical exemptions for required vaccines have more than tripled since the passage of SB 277, putting kids and communities at risk,” said Dr. Richard Pan. “Unscrupulous physicians are profiting from selling medical exemptions to parents seeking to evade laws to protect children at school.  Measles outbreaks in communities with low vaccination rates are now spreading in our country and the world, and our public health doctors and nurses need to be able to protect our schools and neighborhoods.”
“Three years ago, we stepped up our state’s vaccination laws to protect students and the entire public from being exposed to the danger of disease. Now, we’re seeing ant-vaccination parents and a few doctors get around that law by loosely seeking and issuing medical exemptions when families are willing to pay. The real cost is a threat to herd immunity and public health. Enough is enough,” said Assemblywoman Lorena Gonzalez, D-San Diego, principal co-author of Senate Bill 276.
To combat the proliferation of fake medical exemptions, Senate Bill 276 will reshape California’s process to require state-level public health approval of all exemptions. Senate Bill 276 is co-sponsored by the California Medical Association, the American Academy of Pediatrics, California and Vaccinate California.
As physicians, we know the importance of community immunity, and the role we play in protecting our patients and the public at large. SB 276 will ensure that public health comes first, that no physician is able to act outside the accepted standard of care, and that medical exemptions will be reserved for those rare cases where they are actually needed,” said CMA President David H. Aizuss, MD.
Under SB 276, physicians will submit information to California Department of Public Health (CDPH), including the physician’s name and license number and the reason for the exemption, which CDPH will check to ensure they are consistent with the Center for Disease Control’s contraindications to vaccination. The physician must also certify that they have examined the patient in person.
Additionally, under SB 276, CDPH will create and maintain a database of medical exemptions. CDPH and County Health Officers will have the authority to revoke medical exemptions granted by licensed physicians if they are found to be fraudulent or inconsistent with contraindications to vaccination per CDC guidelines. This authority will give state and county health officers the tools necessary to contain and prevent further outbreaks.
“Vaccinating our patients is one of the most important tools pediatricians have to prevent illness and death,” said Kris Calvin of the American Academy of Pediatrics, California. “It is the rare physician who does not take this responsibility to heart, but they put all of us, our children and our communities, at risk. By ensuring medical exemptions to vaccines are reviewed and valid, this bill will protect the health of California's children and of our larger communities. It is a reasonable and urgently needed measure."
“Vaccinate California is committed to keeping all children safe from vaccine-preventable illness at school,” said Leah Russin, a mother from Palo Alto and co-founder of Vaccinate California. “Senate Bill 276 will help protect our children and rebuild community immunity in California by closing a loophole in current law. A child who has had a heart transplant or a child recovering from cancer has enough to worry about – we applaud this important measure to keep them safe from measles at school.”
As a result of the implementation of Senate Bill 277, which abolished the personal belief exemption in California, overall vaccination rates increased sharply to more than 95 percent statewide.  That is greater than the 94 percent vaccination rate necessary to achieve community immunity to prevent the spread of a measles outbreak.
The increase followed the dramatic increase from 92.9 percent in the 2015-16 school year to 95.6 percent in the 2016-17 school year after implementation of SB 277 in 2016 and a vaccination rate of only 90.7 percent in 2010-11 when Dr. Pan entered the legislature and authored AB 2109. AB 2109 required parents to be counseled before they opted out of legally mandated vaccines.
Despite the success of SB 277 in increasing the overall immunization rate of kindergarten students, California has also experienced a dramatic increase in the number of medical exemptions. Since the passage of SB 277, the rate of medical exemptions has more than tripled (from 0.2% in 2015-16 to 0.7% in 2017-18). Low vaccination rates in certain pockets of the state put children and communities at risk.
A very small percentage of the population, less than 1 percent, suffers from qualifying medical condition, such as a severe allergic reaction to a vaccine component that would lead to the granting of medical exemption.
CDPH reports the number of confirmed measles cases here, which as of April 17 was at 23 confirmed cases. But that number is already out of date as more than 30 cases have been reported around the state. The vaccine schedule prevents other types of diseases as well, including pertussis, (also known as whooping cough), which is marked by severe coughing attacks that can last for months. Infants too young for vaccination are at greatest risk for life-threatening cases of pertussis, and a baby in Orange County died from the disease last week.
When measles spreads in a community with immunization rates below 94 percent, the protection provided by ‘community immunity’ is lost. This means many people are at risk of becoming infected including people who cannot be immunized, including infants, chemotherapy patients and those with HIV or other conditions.
The hesitation to vaccinate on the part of a growing number of parents stems from misinformation such as the now retracted 1998 study that falsified data to purport a link between autism and the measles vaccine.  The study was authored by Andrew Wakefield who was later found to be lying. Also, numerous subsequent studies worldwide involving hundreds of thousands of children have proved that vaccines are safe and do not cause autism. 

Wednesday, April 24, 2019

The Wakefield Generation and a Record Level of Measles

Jacqueline Howard and Debra Goldschmidt at CNN:
Measles cases in the United States have surpassed the highest number on record since the disease was declared eliminated nationwide in 2000.
Overall, there have been 681 measles cases across 22 states this year, according to CNN's analysis of data from state and local health departments.
The states reporting measles cases are Arizona, California, Colorado, Connecticut, Florida, Georgia, Illinois, Indiana, Iowa, Kentucky, Maryland, Massachusetts, Michigan, Missouri, Nevada, New Hampshire, New Jersey, New York, Oregon, Tennessee, Texas and Washington.
As of Monday, the US Centers for Disease Control and Prevention reported 626 individual cases of measles confirmed in those 22 states. This includes illnesses reported by state health departments to the CDC through April 19 and therefore does not include cases reported since then.
Soumya Karlamangla at the Los Angeles Times:
Los Angeles health officials warned this week that students and staff at UCLA and Cal State L.A. may be at risk of catching measles, an announcement that has raised questions about universities’ susceptibility to disease outbreaks.

Not only can cramped dorm rooms and crowded classrooms be breeding grounds for contagion, but young adults in California are less likely to be vaccinated than other age groups, experts say. One of the people infected in L.A.’s measles outbreak is a UCLA student, university officials confirmed Tuesday.
People who are now in their early 20s are part of what’s known as the “Wakefield generation,” because they were infants in 1998 when British scientist Andrew Wakefield published a now discredited paper claiming that vaccines cause autism. Scared of the side effects of vaccination, many parents chose to opt out.

Tuesday, April 23, 2019

Measles and Antivaxxers

CDC reports:
From January 1 to April 19, 2019, 626** individual cases of measles have been confirmed in 22 states. This is an increase of 71 cases from the previous week. This is the second-greatest number of cases reported in the U.S. since measles was eliminated in 2000, second only to the 667 cases reported during all of 2014. In the coming weeks, 2019 confirmed case numbers will likely surpass 2014 levels.
The states that have reported cases to CDC are Arizona, California, Colorado, Connecticut, Florida, Georgia, Illinois, Indiana, Iowa, Kentucky, Maryland, Massachusetts, Michigan, Missouri, Nevada, New Hampshire, New Jersey, New York, Oregon, Texas, Tennessee, and Washington.

Trends in Measles Cases: 2010-2019
Alfred Lubiano at The Philadelphia Inquirer:
The rebel forces in America’s latest culture war — the so-called anti-vaxxers — are often described as middle- and upper-class women who breast-feed their children, shop at Whole Foods, endlessly scour the web for vaccine-related conversation, and believe that their thinking supersedes that of doctors. Typically their families earn more than $75,000 a year.

That’s based on findings from various studies, including the National Immunization Surveys conducted by the federal Centers for Disease Control and Prevention’s National Center for Immunization and Respiratory Diseases.
Reports indicate many of the infected weren't vaccinated. The CDC says that the percentage of children who are unvaccinated has quadrupled since 2001. About 25 per cent of parents are delaying vaccinations or allowing only certain vaccines to be used "cafeteria style," said Jennifer Reich, sociologist at the University of Colorado and author of the book "Calling the Shots: Why Parents Reject Vaccines."
"Frankly, these Caucasian, suburban, educated parents believe they can Google the word vaccine and get as much information as anybody," said Paul Offit, a professor of pediatrics and director of the Vaccine Education Center at Children's Hospital of Philadelphia.These people are educated just well enough to make terrible decisions for their children."
Vaccine resistance has become a “form of privilege,” Reich said. Educated mothers develop a sense of entitlement that helps them decide which vaccines are unnecessary, Reich said, adding, “They focus on organic foods, health-promoting practices at home — ways they see of mitigating disease risk.”

Monday, April 22, 2019

Dental Care

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

David Tuller of Kaiser Health News at The Washington Post:
People with autism, cerebral palsy and other developmental disorders face enormous barriers to adequate and timely dental care — on top of their other challenges. Many dentists either avoid treating these patients or lack the skills needed to do so. Some patients with developmental disabilities are unable to endure even regular dental exams or cleanings without general anesthesia.
But most dentists don’t offer it and getting insurance to cover it for routine dental work is often a struggle.
Because it is difficult for them to get treatment, people with developmental disorders suffer “a high burden of dental disease,” according to a 2012 study of more than 4,700 patients published in the Journal of the American Dental Association. Thirty-two percent of the patients studied suffered from untreated cavities and 80 percent from serious gum infections.

“Many individuals with developmental disabilities cannot personally maintain their own dental hygiene,” according to a September study by the California Legislative Analyst’s Office (LAO). “Often, they need extra appointments or special accommodations that dentists are unable or unwilling to provide.”
In many cases, patients need these extra appointments to help them get accustomed to the environment of a dental office, including the equipment, procedures and personnel. This can help minimize their anxiety and reduce the need for deep sedation or general anesthesia.
But sometimes there is no alternative to anesthesia.

Sunday, April 21, 2019

The Church of Bleach

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.

Chiara Giordano at The Independent:
A self-described “church” is promoting a dangerous miracle cure which claims to eradicate 95 per cent of illnesses including HIV and autism by making people drink bleach.
The quasi-religious organisation called Genesis II Church of Health and Healing was due to host an event in Leavenworth, Washington, on Saturday to push the “effective alternative healing”.

The group asked for payments of between $450 and $800 per person (£346 to £615) for couples attending the event in exchange for a year’s membership to the organisation and packages of bleach, known as “sacraments”.

From FDA:
Products or treatments claiming to cure autism are deceptive and misleading, because there is no cure for autism. The same is true of many products claiming to “treat” autism or autism-related symptoms. Some may carry significant health risks.
The Food and Drug Administration (FDA) plays an important role in warning companies against making improper claims about their products’ intended use as a treatment or cure for autism or autism-related symptoms.
FDA Cracks Down on False Claims
The Food and Drug Administration has warned and/or taken action against a number of companies that have made improper claims about their products’ intended use as a treatment or cure for autism or autism-related symptoms. Some of these so-called therapies carry significant health risks. For example,
  • Chelation Therapies.” These products claim to cleanse the body of toxic chemicals and heavy metals by binding to them and “removing” them from circulation. They come in a number of forms, including sprays, suppositories, capsules, liquid drops and clay baths. FDA-approved chelating agents are approved for specific uses that do not include the treatment or cure of autism, such as the treatment of lead poisoning and iron overload, and are available by prescription only. FDA-approved prescription chelation therapy products should only be used under professional supervision. Chelating important minerals needed by the body can lead to serious and life-threatening outcomes.
  • Hyperbaric Oxygen Therapy. This involves breathing oxygen in a pressurized chamber and has been cleared by FDA only for certain medical uses, such as treating decompression sickness suffered by divers.
  • Detoxifying Clay Baths. Added to bath water, these products claim to draw out chemical toxins, pollutants and heavy metals from the body. They are improperly advertised as offering “dramatic improvement” for autism symptoms.
  • Various products, including raw camel milk, MMS (chlorine dioxide) and essential oils. These products have been marketed as a treatment for autism or autism-related symptoms, but have not been proven safe and effective for these advertised uses.
FDA some quick tips to help you identify false or misleading claims.
  • Be suspicious of products that claim to treat a wide range of diseases.
  • Personal testimonials are no substitute for scientific evidence.
  • Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”
  • So-called “miracle cures,” which claim scientific breakthroughs or contain secret ingredients, are likely a hoax.
If you have a question about treatment, talk to a health care provider who specializes in caring for people with ASD.
The National Institute for Child Health and Human Development has more information about therapies and interventions for ASD, as does the Centers for Disease Control and Prevention.

Saturday, April 20, 2019

Increasing Vaccine Coverage

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

At JAMA, Lawrence O. Gostin, Scott C. Ratzan, and Barry R. Bloom have an article titled Safe Vaccinations for a Healthy Nation: Increasing US Vaccine Coverage Through Law, Science, and Communication."
As summarized by the National Academy of Medicine, large clinical trials, and numerous observational studies, have definitively refuted any connection between vaccines and autism.3 Further, multiple vaccines spaced together, another expressed health concern, pose no greater risk. Two doses of vaccine provide 97% protection for measles. “Herd immunity” requires 95% immunization coverage to provide community protection against measles.
Policy makers have clear tools to increase vaccine coverage, thus reducing harm to children and their families. Because vaccines play such a critical role in the health of children, a long-term national health communication campaign to build vaccine literacy, potentially called Safe Vaccines for a Healthy America, could be useful in increasing and restoring faith in the safety and importance of vaccines. The dissemination of evidence-based information should be a key part of the program and should be uncontroversial. ... Pediatricians and obstetricians could also counsel parents, reassuring them about vaccine safety. When parents request vaccine exemptions, states could require a physician’s certificate affirming they have discussed vaccines’ benefits and risks, and indicate that they are aware that false responses have legal consequences.
Public information campaigns compete with a complex web of false information. Public health authorities, therefore, should partner with the private sector to improve the informational environment. Encouragement, and oversight, of major social network organizations is needed to stem the flow of misleading information. Private and publicly traded companies should screen out false antivaccine messages and cease providing a platform for harmful exchange of falsehoods that promote childhood disease, just as they do for sexually explicit, violent, or threatening messages. Social media companies could go further, exercising corporate responsibility by disseminating science-based health information to advance societal well-being and vaccine confidence.

The federal government should encourage states to end or tighten religious or philosophical exemptions, following the lead of California, which enacted evidence-based policies. If states fail to act, federal authorities have the power to incentivize compliance. They could, for example, condition a portion of Medicaid or Affordable Care Act funding on states tightening their vaccine laws. Conditional funding should not be overly coercive, and Congress should take steps to avoid harming already disadvantaged populations. While the federal government has limited power to compel vaccination, the Supreme Court has affirmed its use of conditional funding. In 1987, the Court upheld a law conditioning national highway funding based on states enacting a minimum drinking age of 21 years. Immunization is a national problem as childhood diseases transcend state borders; vaccine hesitancy, therefore, requires a national solution.

Friday, April 19, 2019

Trump Would Cut Help for People with Disabilities

Tom Ridge, former GOP governor of Pennsylvania and the first DHS secretary, chairs the National Organization on Disability.  He writes at The New York Times about Trump's proposed cuts to programs for people with autism and other disabilities.
Independent living centers, assistive-technology programs, supports for individuals living with brain injuries and family caregiver support services are among those programs and services on the chopping block. So too is the Office of Disability Employment Policy. This office, within the Labor Department, is the only nonregulatory federal agency that promotes policies and coordinates with employers and all levels of government to increase workplace success for people with disabilities.
I agree with Senators Bob Casey and Sherrod Brown, who recently wrote to the director of the Office of Management and Budget and said that any budget proposal by any administration should reflect the goals of the A.D.A.: equal opportunity, independent living, full participation and economic self-sufficiency. The exclusion of any group of people from our economy is not only a problem for those who’ve been excluded. It’s a scourge on our democracy that touches us all.

Thursday, April 18, 2019

Special Education Costs in California

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

Paul Warren, research associate at the Public Policy Institute of California, testified on March 28 before the California State Senate Education Budget Subcommittee:
The committee asked PPIC to help them understand why district special education costs are rising so quickly.
First, some background. The AB 602 formula provides about $500–600 in state special education funds per student in each district, based on average daily attendance (ADA). The number of students with disabilities in a district does not affect state funding amounts. Each year, that amount is increased by the change in ADA and by a cost-of-living adjustment.
In the PPIC report, Special Education Finance in California, my colleagues and I identified several reasons why AB 602 funding has not kept pace with district costs:

  • Changes in the rate and type of disabilities. We estimated that these changes increased annual district costs by around $1.1 billion. The state formula is currently based on average district costs from the late 1990s.
  • Growth in preschool for children with disabilities under the age of 5. This population grew about 10 percent from 2005 to 2015. The AB 602 formula does not adjust district funding for changes in this group, as pre-school children with disabilities do not count toward ADA.
  • Higher district salaries since the Great Recession. The large LCFF [Local Control Funding Formula] increases during the economic recovery shaped salary negotiations. But AB 602 did not adjust to the higher costs for special education teachers and administrators.
In a report from last year, Revisiting Finance and Governance Issues in Special Education, we provide two options for modifying the AB 602 formula:
  • Increase AB 602 by the same percentage amount as LCFF funding. This makes sure that state funding for special education increases at the same rate as LCFF.
  • Increase AB 602 by the actual increase in special education costs. This would hold the state share of special education costs constant over time.
We also recommend caution when considering proposals to base state special education funding on counts of students with disabilities. Differences in district identification practices affect the share of students identified for special education services. We found that the county with the lowest rate of students with disabilities reported that about 8.8 percent of students were in special education. In contrast, the county with the highest rate reported that about 17.6 percent of students were in the program. This disparity strongly suggests that district practices affect district caseloads, and basing state funding on the number of students with disabilities could create financial incentives to identify more students.
Our two options would avoid this identification problem while better aligning state funding for special education with LCFF and district costs.

Tuesday, April 16, 2019

Measles Wildfire

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

During his campaign for the White House, Trump met with British physician Andrew Wakefield—whose 1998 article claiming a link between vaccines and autism has been thoroughly debunked—and also with prominent anti-vaxxer Robert F. Kennedy, Jr., who reported that Trump was planning to appoint him chair of a new “vaccine safety commission.”

Fortunately, that never happened. And Trump has gone quiet about vaccinations, which is better than repeating falsehoods about them... But it’s hard to work together when the guy in charge is checked out. A single tweet from Donald J. Trump—VACCINATE YOUR KIDS!—would do more than anything else to protect American children right now. Let’s hope he can summon the courage and decency to send it.

In just the first three months of 2019, there have been more than 110,000 measles cases reported worldwide, a figure that is up nearly 300% from the same period last year. And these numbers will represent just a fraction of all the cases that occur. By the time you finish reading this, we estimate that at least 40 people -- most of them children -- will be infected by this fast-moving, life-threatening disease.
We're worried not only because measles can be so severe -- it still causes over 100,000 deaths every year -- but also because it is extremely contagious.
n those who are not immune, measles will infect approximately 9 in 10 people exposed to it. And since it is so infectious, it may be the first disease to appear where children are not getting the vaccines they need to keep them safe. And the presence of measles can point to a pocket of unvaccinated children and a possible dysfunction in the health system.
In short, measles is the canary in the coalmine of vaccine preventable illnesses.
From January 1 to April 11, 2019, 555** individual cases of measles have been confirmed in 20 states. This is the second-greatest number of cases reported in the U.S. since measles was eliminated in 2000.
The states that have reported cases to CDC are Arizona, California, Colorado, Connecticut, Florida, Georgia, Illinois, Indiana, Kentucky, Maryland, Massachusetts, Michigan, Missouri, Nevada, New Hampshire, New Jersey, New York, Oregon, Texas, and Washington.
Trends in Measles Cases: 2010-2019

Monday, April 15, 2019

Tight-Knit Communities and Vaccine Hesitancy

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

Sumathi Reddy at WSJ:
In 2017 it was a Somali community in Minnesota. In 2014 it was the Amish in Ohio. This year, it is Orthodox Jewish communities in New York and Eastern Europeans in Washington state.
Insular and close-knit religious or cultural groups have seen some of the worst measles outbreaks in the U.S. in recent years.

About 75% of measles outbreaks over the past five years—defined as three or more linked cases—took place in such tightknit communities, says Nancy Messonnier, acting director of the CDC’s Center for Preparedness and Response, and an expert on immunization and respiratory diseases. Such groups share the same culture and are often somewhat isolated from the larger community.
In Ohio, when a measles outbreak hit an Amish community in 2014, they were willing to get the MMR vaccine when they saw the effect the disease was having, says Michael Brady, associate medical director at Nationwide Children’s Hospital in Columbus. The issue wasn’t the vaccine, he says, but their philosophy of not accepting anything from the government.

In Washington state where a measles outbreak has been contained, advocates and health experts say there is documented vaccine hesitancy in the Ukrainian and Russian-speaking populations.
Tetyana Odarich, a family medicine physician in Portland, Ore., sees many patients from the Ukrainian and Russian community in the area and says roughly half don’t want to get their children vaccinated.

Sunday, April 14, 2019

PEACH: Language and Tactics of an Antivax Group

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

Claudia Koerner and Julia Reinstein at Buzzfeed:
PEACH, formally known as Parents Educating and Advocating for Children’s Health, has been circulating magazines and pamphlets since at least 2014 that claim vaccines are in opposition with Jewish religious law, (falsely) link vaccines to autism, and recount anonymous horror stories of children being irreparably harmed by vaccines.

Public health officials have called the measles outbreak a crisis, with 180 recorded cases of the disease since last fall in Rockland County and at least 285 in New York City. In both areas, measles has struck particularly hard in Orthodox Jewish neighborhoods, and health officials have worked with rabbis and other community leaders to spread the message: Vaccines are safe, and they save lives.

The PEACH stories and "experts" tell a darker story, one that's been repeatedly debunked by mainstream science, medical professionals, and religious leaders. The pamphlet downplays the danger of diseases such as measles, while pointing to the increase in diagnoses of autism. (Experts say those numbers have risen as parents have become more aware of autism, and doctors now diagnose a range of characteristics as part of the autism spectrum.) The pamphlet accuses pediatricians of covering up the dangers of vaccines for financial gain — another conspiracy theory — when in reality, vaccines are a tiny sliver of the pharmaceutical industry's profits, and individual doctors can lose money on administering vaccines.
"Enriched Parenting is a DBA of Parents Educating & Advocating for Children's Health, Inc. Our organization is not affiliated with Peach magazine. We are an organization that supports religious, philosophical, and medical choice. We are not, nor ever have been 'anti' anything other than coercion and loss of civil liberties," she said in a statement. "We support informed decision making and right of choice for all parents. Our activities are geared toward education and health options on a wide variety of subjects not limited to vaccine information. We are a pro-choice organization."

Saturday, April 13, 2019

Economic Costs of Autism

In The Politics of Autism, I discuss costs and benefits of autism services.

Nicky Rogge and Juliette Janssen have an article at Journal of Autism and Developmental Disorders titled The Economic Costs of Autism Spectrum Disorder: A Literature Review

The abstract:
Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers covering multiple countries (US, UK, Australia, Canada, Sweden, the Netherlands, etc.) were analysed. Six types of costs are discussed in depth: (i) medical and healthcare service costs, (ii) therapeutic costs, (iii) (special) education costs, (iv) costs of production loss for adults with ASD, (v) costs of informal care and lost productivity for family/caregivers, and (vi) costs of accommodation, respite care, and out-of-pocket expenses. A general finding is that individuals with ASD and families with children with ASD have higher costs. Education costs appear to be a major cost component for parents with children with ASD.
From the article:
Based on the studies reviewed, the overall lifetime costs for individuals with ASD are estimated to be situated somewhere between $ 2.4 million (in 2011 US$) (Buescher et al. 2014) to $ 3.2 million (in 2003 US$) (Ganz 2007) for the US and from £ 1.5 million (in 2011 £) (Buescher et al. 2014) to £ 2.4 million (in 1997–1998 £) (J√§rbrink and Knapp 2001) for the UK. As a total figure for the US, Leigh and Du (2015) estimated annual direct medical, direct non-medical, and productivity costs combined to be $268 billion (range $162–$367 billion; 0.884–2.009% of GDP) for 2015 and forecast this cost to be $461 billion (range $276–$1011 billion; 0.982–3.600% of GDP) for 2025. Moreover, as pointed out by some studies, reported cost estimation figures are likely to underestimate true ASD-related costs due to omitted health impacts, omitted economic impacts, omitted impact on social life, and the costs of health actions in other sectors.
[T]he cost of (special) education, EIBI and therapy, individual productivity loss, parental productivity loss, and (supported) accommodation and residential care are among the largest contributors to total lifetime costs for an individual with ASD. The recent anonymous online survey for children and adults with ASD organized across multiple EU-countries in a large-scale project (ASDEU 2018), found similar results, with the cost of special education services being the highest cost component, followed by the costs of tutorial support, especially among younger people with ASD. Medical and healthcare costs related to ASD have been found to constitute only a small part of the total costs for individuals with ASD, with medical costs being higher for adults with ASD than for children with ASD. Estimates also show that smaller out-of-pocket expenses related to ASD, such as travel costs, cost related to making the house more ASD-friendly, purchase of specialised tools or equipment, etc., cannot be ignored when analysing the costs related to ASD. Summed together, all these out-of-pocket expenses can place a significant financial burden on the family budget. As to the costs of ASD-related therapies, due to the differences in therapy categorization and widely divergent cost estimates for ASD therapies, it is difficult to get a clear picture of the costs of therapy and/or EIBI programmes for individuals with ASD. Nevertheless, the studies that assessed the cost-effectiveness of EIBI for (young) children with ASD found that such therapy programmes are cost-effective and can result in cost savings throughout the lifetime of individuals with ASD.

Friday, April 12, 2019

Prevalence Among 4-Year-Olds

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

It finds that prevalence was higher in 2014 than in 2010 in New Jersey, but was stable in Arizona and Missouri. From the abstract:
The findings suggest that ASD prevalence among children aged 4 years was higher in 2014 than in 2010 in one site and remained stable in others. Among children with ASD, the frequency of cognitive impairment was higher among children aged 4 years than among those aged 8 years and suggests that surveillance at age 4 years might more often include children with more severe symptoms or those with co-occurring conditions such as intellectual disability. In the sites with data for all years and consistent data sources, no change in the age at earliest known ASD diagnosis was found, and children received their first developmental evaluation at the same or a later age in 2014 compared with 2010. Delays in the initiation of a first developmental evaluation might adversely affect children by delaying access to treatment and special services that can improve outcomes for children with ASD.

Public Health Action: Efforts to increase awareness of ASD and improve the identification of ASD by community providers can facilitate early diagnosis of children with ASD. Heterogeneity of results across sites suggests that community-level differences in evaluation and diagnostic services as well as access to data sources might affect estimates of ASD prevalence and age of identification. Continuing improvements in providing developmental evaluations to children as soon as developmental concerns are identified might result in earlier ASD diagnoses and earlier receipt of services, which might improve developmental outcomes.