Long HCBS Waiting Lists May Be Illegal

In The Politics of Autism, I write:

The Olmstead decision, mentioned earlier, requires placement in “integrated settings” when the individuals are medically cleared, they express a desire for such settings, and the resources are available. Olmstead assumed that states would provide long-term services and supports through home and community-based services (HCBS). Again, autistic adults often face long waiting lists. State officials reported that an estimated 110,039 people with intellectual and developmental disabilities were waiting for residential services in 2012. 

Michelle Diament reports at Disability Scoop:

Being on a waiting list for community-based services may be evidence enough that an individual with developmental disabilities is at risk for institutionalization in violation of the Americans with Disabilities Act, according to the U.S. Department of Justice.

In a statement of interest filed this month, the Justice Department said that if individuals with developmental disabilities are not receiving services in the community, they may have a claim that their rights have been violated.

“Non-institutionalized individuals with disabilities who are not currently receiving state-funded home- and community-based services may bring a claim that a public entity has placed them at risk of institutionalization or segregation in violation of the ‘integration mandate’ of Title II of the Americans with Disabilities Act,” the federal filing indicates.

DA Promotes Discredited Vaccine Notion

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. 

At The San Antonio Express-News, Brian Chasnoff reports on the Bexar County DA who offered a video endorsement of the vaccine theory.

I’m Nico LaHood,” he said. “I’m the criminal district attorney in San Antonio, Texas. I’m here to tell you that vaccines can and do cause autism.”

The video ends with a plug for a documentary, “Vaxxed: From Cover-up to Catastrophe,” and promises that “Niko’s (sic) Story” is “coming” today.

The “Autism Media Channel” posted the video to Facebook on Friday. Two days later, LaHood screened the controversial documentary at Santikos Bijou Cinema Bistro, according to a source who was invited to (but didn’t attend) the Sunday screening.

The article quotes autism mom Fiona O'Leary:

“I’m really, really outraged by this comment actually because we’re used to hearing the quacks and the discredited doctors terrifying parents,” O’Leary said. “But now, we have a professional, a criminal district attorney, making these statements. This man was in his office when he made this statement, presenting under his professional title as a criminal district attorney.

“It’s a reckless statement, and I think he should issue a public apology,” she added.

Tara Haelle writes at Forbes:

But LaHood “just happens to be the DA,” which means he has an aura of authority and is likely respected by many individuals in his community. He has a legal degree and legal expertise, but that does not mean he has any scientific expertise. Being a “daddy” doesn’t give him any extra expertise in medical research either. He therefore should not be irresponsibly speaking out on a topic he is ignorant about and angering parents of autistic children who actually do understand the science.

LaHood expects his statements to be unpopular because he said in the interview that his “is not a politically correct opinion.” But political correctness has nothing to do with vaccines or autism or any other medical evidence. Neither does anyone’s opinion. Scientific facts are scientific facts—opinion plays no role at all—and they’re based on evidence, which in this case clearly shows the safety of vaccines and their irrelevance to autism.

So LaHood needs to stop sharing his misbeliefs publicly, not because they’re not “politically correct” but because, quite simply, they aren’t scientifically correct.

Countering Vaccine Hesitancy

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   Until fairly recently, as I explain in the book, pediatricians and other professionals undercut their own credibility.

And it is understandable why many parents of autistic children would be especially skeptical of the authorities. Often, their first encounter is a bad one. At least until recently, many pediatricians failed to screen for autism, or overlooked early signs of the disorder. Jenny McCarthy writes: “I had no idea flapping was a common characteristic of autism. Tiptoe walking and spinning in circles all day are two more that are high up on the list. You would have thought his pediatrician might have noticed something along the way, mind you, but he did not.” After pediatricians are clueless about the early signs of autism, parents might question their assurances about vaccines. And once parents start reading up on autism, they will probably learn that clinicians once believed in Bettelheim’s “refrigerator mother” theory. If he proved to be a fraud, they reason, will not the same fate meet today’s scientists?

Still, pediatricians are trying to get good science across to their patients.

A release from the American Academy of Pediatrics:

Most parents who are hesitant about vaccines are not opposed to immunizing their children, but rather are unsure or have questions. And the best source of answers is their pediatrician.

To equip pediatricians for these conversations, the American Academy of Pediatrics is publishing a new clinical report, “Countering Vaccine Hesitancy” in the September 2016 Pediatrics (published online Aug. 29). The AAP advises pediatricians to have compassionate dialogues with parents to clear up misconceptions around vaccines, provide accurate information about the safety and importance of vaccines, and strive over time to help parents make the decision to vaccinate their child.

To protect all children in every community, the AAP also urges state governments to enact policies that will result in high immunization rates. In the policy statement, “Medical Versus Nonmedical Immunization Exemptions for Child Care and SchoolAttendance ,” published the same day, the AAP recommends only medical exemptions be allowed for vaccine requirements for child care and school attendance.

“Parents, pediatricians, and policy-makers all have a role here in protecting children from diseases like measles and whooping cough,” said AAP President Benard P. Dreyer, MD, FAAP. “As pediatricians, we care about every individual child in our practices, and we know that vaccines are an important way to protect them from disease. We also care about the broader communities where our patients live, play and learn, and high immunization rates are critical to keeping disease outbreaks at bay. No child should have to suffer through a disease that could have been prevented by a vaccine.”

According to the AAP, non-medical exemption laws have failed.

“It’s clear that states with more lenient exemptions policies have lower immunization rates, and it’s these states where we have seen disease outbreaks occur as the rates slip below the threshold needed to maintain community immunity,” said Geoffrey R. Simon, lead author of the medical exemptions policy statement and immediate past chair of the AAP Committee on Practice and Ambulatory Medicine.

Melissa Healy reports at The Los Angeles Times:

The survey results released Monday show that parents’ concerns about vaccines have shifted in recent years. In 2006, pediatricians reckoned that nearly three-fourths of parents reluctant to vaccinate their children were motivated by fear that some vaccines could cause autism or have other adverse effects on a child’s safety.

By 2013, safety concerns and the discredited link between vaccines and autism appeared to be less prominent causes of parental resistance. Instead, physicians attributed a growing number of parental objections to the view that vaccines are an unnecessary discomfort for their young children.

Vaccine Hesitancy

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

More fundamentally, many of the advocates of the vaccine theory reject the authority of “the establishment.” They believe that scientists and government agencies that support vaccines are blind, indifferent, or corrupt. “No one mentions that these people have everything at stake in this debate,” writes one. “If countless parents are right and vaccines have damaged a generation of children, people will be held responsible—the same people who tell us vaccines are safe.”

Such sentiments find fertile ground in public opinion, since trust in government has plunged over the past half-century.

At The Journal of Health Care Politics, Policy, and Law, Efthimios Parasidis has an article titled Public Health Law and Institutional Vaccine Skepticism.  The abstract:

Vaccine-hesitant parents are often portrayed as misinformed dilettantes clinging to unscientific Internet chatter and a debunked study that linked vaccines and autism. While this depiction may be an accurate portrayal of a small (but vocal) subset, scholars have unearthed a more complex picture that casts vaccine hesitancy in the context of broader notions of lack of trust in government and industry. At the same time, commentators have highlighted limitations of the vaccine injury compensation program and US Supreme Court Justices Sonia Sotomayor and Ruth Bader Ginsburg have argued that preemption laws that provide vaccine manufacturers with broad legal immunities create “a regulatory vacuum in which no one ensures that vaccine manufacturers adequately take account of scientific and technological advancements when designing or distributing their products.” In short, the discussions surrounding vaccine hesitancy that dominate public discourse detract from serious debate as to whether amendments to vaccine-related laws can address the limitations of the existing framework governing immunizations. This commentary examines these issues through a public health law lens.

No Preliminary Injunction Against California Vax Law

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

Paul Sisson reports at The San Diego Union-Tribune that a federal judge denied an an injunction request against California's new vaccine law.

The ruling, made by U.S. District Court Judge Dana Sabraw in San Diego, means that all kindergarteners and seventh graders in public and private schools across the state must prove they are fully inoculated against 10 different diseases, from diphtheria to tetanus, unless they have a medical exemption form signed by a licensed doctor.

On July 1 a coalition of parents and other organizations, including three from San Diego, sued the state, claiming that the law, SB 277, violated their constitutional rights to an equal public education and to their rights of free exercise of religion. There are also two other pending lawsuits against the law, both filed by parents in Los Angeles. The San Diego case is the first to have an injunction hearing and decision.

Sisson reports that opponents of the law have a variety of motives.

Some are outright opposed to all vaccinations out of concerns that they cause conditions such as autism despite many peer-reviewed papers that show otherwise. Others say they are simply opposed to the pace and breadth of the government’s vaccination schedule and would prefer that their children get their shots at less frequent intervals. Others object to certain vaccinations, such as those that prevent hepatitis and chicken pox, because they prevent disease in older children or adults but not young children. And then there are those who say they fear adverse reactions because family members or relatives have had problems that cropped up after receiving a vaccine dose.

Skeptical Raptor offers a detailed analysis, concluding:

Judge Sabraw’s decision is well grounded in case law, provides resounding answers to the plaintiffs claim, and is legally very, very sound. It also protects children and the public health by allowing SB277 to go into force, making schools safer from outbreaks, while the law is debated in courts

Autism and Organochlorine Chemicals

In The Politics of Autism, I discuss various ideas about what causes the condition.

Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy. 

A release from Drexel University:

Chemicals used in certain pesticides and as insulating material banned in the 1970s may still be haunting us, according to new research that suggests links between higher levels of exposure during pregnancy and significantly increased odds of autism spectrum disorder in children.

According to the research, children born after being exposed to the highest levels of certain compounds of the chemicals, called organochlorine chemicals, during their mother's pregnancy were roughly 80 percent more likely to be diagnosed with autism when compared to individuals with the very lowest levels of these chemicals. That also includes those who were completely unexposed.

Although production of organochlorine chemicals was banned in the United States in 1977, these compounds can remain in the environment and become absorbed in the fat of animals that humans eat, leading to exposure.

With that in mind, Kristen Lyall, ScD, assistant professor in Drexel University's A.J. Drexel Autism Institute, and her collaborators, decided to look at organochlorine chemicals during pregnancy since they can cross through the placenta and affect the fetus' neurodevelopment.

"There's a fair amount of research examining exposure to these chemicals during pregnancy in association with other outcomes, like birth weight -- but little research on autism, specifically," Lyall said. "To examine the role of environmental exposures in risk of autism, it is important that samples are collected during time frames with evidence for susceptibility for autism -- termed 'critical windows' in neurodevelopment. Fetal development is one of those critical windows."

Their paper describing this study was titled, "Prenatal Organochlorine Chemicals and Autism," and published in Environmental Health Perspectives. 

...

Blood tests taken from the second trimester of the children's mothers were used to determine the level of exposure to two different classes of organochlorine chemicals: Polychlorinated biphenyls (PCBs, which were used as lubricants, coolants and insulators in consumer and electrical products) and organochlorine pesticides (OCPs, which include chemicals like DDT).

"Exposure to PCBs and OCPs is ubiquitous," Lyall said. "Work from the National Health and Nutrition Examination Survey, which includes pregnant women, shows that people in the U.S. generally still have measurable levels of these chemicals in their bodies."

Training Law Enforcement Officers in Florida

In The Politics of Autism, I discuss interactions between first responders and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand.

Caroline Glenn reports at Florida Today:

Delays in processing are a common symptom of autism, which affects 1 in 68 children. So is avoiding eye contact, poor conversation skills and sometimes the inability to communicate at all.

“What we don’t want teachers or law enforcement officers to do is misconstrue that symptom of autism as being evasive or disrespectful or lying,” said Michael Kelley, director of the Scott Center for Autism Treatment at the Florida Institute of Technology.

The Scott Center held its first training session for Brevard County officers Wednesday morning at the Eastern Florida State College Melbourne campus. Teachers, parents and officers from six agencies across the county turned out to learn how to recognize the symptoms of autism and respond appropriately.

Voting Rights in California

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"

But disabled people sometimes face barriers to voting.

Elliott Spagat reports at AP:

A former producer at NPR who lost his ability to walk and speak asked a judge Tuesday to restore his right to vote under a new California law that makes it easier for people with disabilities to keep that right and regain it if lost.

David Rector, 66, handed a letter to a court clerk shortly after an advocacy group filed a complaint with the U.S. Justice Department asking that California be required to notify people who have been disqualified from voting about the law in time for the Nov. 8 election.

"How are these folks supposed to know about the right to get their voting rights back unless somebody tells them?" Thomas Coleman, legal director of the Spectrum Group, said outside the federal building in downtown San Diego. "The state judiciary has been dragging its feet."

...
 For years, California judges had stripped away the voting rights of people with some disabilities, including autism, Down syndrome and cerebral palsy, "almost as a matter of routine," Coleman said.

The media advisory from The Spectrum Institute:

On New Year’s Day 2016 a new state law went into effect in California which affirms the right to vote for thousands of seniors and people with disabilities. If they can express their desire to vote, they have the right to vote. The problem? Unless immediate action is taken, thousands of eligible California voters are going to be watching November’s election results on television knowing they were prevented from voting because of California officials previously disqualified them from voting – in violation of federal voting rights laws.

Take the case of San Diego resident David Rector. David, who is a quadriplegic, acquired a condition known as “locked-in syndrome” after suffering a massive stroke in 2009. He can think, feel, comprehend, remember, see, hear, and express emotions but cannot move his limbs functionally. He was a producer for National Public Radio before his illness. He was able to vote in 2010 with assistance but was stripped of that voting right by a local official in 2011.

David is going to court on Tuesday, to request that his voting rights be restored IMMEDIATELY.

David Rector’s story is not unique. Spectrum Institute filed a complaint in July 2014 with the Department of Justice alleging that California officials had violated federal voting rights laws. The DOJ opened an inquiry in May 2015 which is ongoing. That investigation is statewide and implicates the voting rights of tens of thousands of seniors and people with disabilities. 

The California legislature worked to correct the problem and passed the new state law (SB 589). However, seniors and people with disabilities who have also lost their voting rights as David did are unaware of the new law and government officials are slow to restore their voting rights.

This is why on Tuesday, August 23, Spectrum Institute is filing a new class action complaint with the DOJ. They want that agency to press the State of California to speed up the voting rights restoration process. After the complaint is filed, David and his supporters will walk to court where David will say “I want to vote” with the aid of his electronic voice. It is those four magic words that trigger the duty of the State of California to restore his voting rights.

Spectrum Institute estimates there are 30,000 or more Californians like David who lost their right to vote in previous years and who are eligible to ask for that right to be restored under SB 589. But they must be registered to vote by October 24 or they will be watching the election returns rather than helping to shape those results with their own vote. People with disabilities should have the same right to vote as every other American. What happens in California will have ramifications in other states with laws that disqualify many people with disabilities from voting. #

Gap in California Vax Requirement

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

Jill Tucker reports at The San Francisco Chronicle:

While a new state law requires children to be vaccinated to attend public or private school, thousands of California students are filing into classrooms this month without the required immunizations.

In fact, it will be years before the law that Gov. Jerry Brown signed last year, in the aftermath of a measles outbreak that was traced to Disneyland, fully takes effect and forces all kids — save those with strict medical exemptions — to have all their shots.

What’s changed is that parents can no longer opt out of vaccinations by claiming a religious or personal-belief exemption. However, parents need to provide immunization records at only two points of their child’s school career — at the outset of kindergarten and seventh grade.

As a result, those who had already claimed an exemption are grandfathered in until they move from preschool to kindergarten or from sixth to seventh grade. First-graders won’t have to show proof of immunizations for six years, and eighth-graders can graduate from high school without ever having to get the 10 shots preventing diseases like measles and hepatitis.

Tracking Bracelets

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

Glen Luke Flanagan writes at The State:

New tracking bracelets are being rolled out at the Lexington County Sheriff’s Department which will let deputies find residents – many with health problems – more quickly.

The bracelets are geared toward those with dementia or autism.

“Law enforcement officers have a soft spot in their heart when, over the radio, the call comes that a child is missing or has wandered off – or a vulnerable adult has,” said Tim Parcheta, a detective who manages the program at the sheriff’s department.

About a dozen residents are signed up already as Lexington County becomes the 21st agency in South Carolina – including Richland County – to use the bracelets.

...
 The tracking program, called Project Lifesaver, uses a bracelet the size of a wristwatch to emit a signal. Deputies can pinpoint the signal if they are within a mile of the bracelet, officials said.

...
This program has seen success in the Midlands,as Richland County deputies found an autistic teen who went missing in June.

From Autism Speaks:

Please RT to ask @HouseJudiciary & @HouseJudDems to support Kevin and Avonte's Law to keep those with #autism safe. pic.twitter.com/Y0fsr0cWqM

— Autism Votes (@autismvotes) August 22, 2016

Vaccines, Autism, Science, and Trump

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  

Lawrence M. Krauss writes at The New Yorker:

Often, Trump is simply wrong about science, even though he should know better. Just as he was a persistent “birther” even after the evidence convincingly showed that President Obama was born in the United States, Trump now continues to propagate the notion that vaccines cause autism in spite of convincing and widely cited evidence to the contrary. (As he put it during a Republican debate, last September, “We’ve had so many instances. . . . A child went to have the vaccine, got very, very sick, and now is autistic.”) 

Dr. Amy Tuteur writes:

Both Trump and anti-vaxxers aren’t merely evidence resistant; they are fact resistant. However, a good portion of what appears to be blatant lying by Trump or anti-vaxxers is more properly described as “bullshitting.” To lie, one must be aware of the truth; bullshitting, in contrast, is a form of arrogant ignorance. Trump and anti-vaxxers often have no knowledge of a particular issue. Rather than acknowledge that (or correct it), they issue streams of blather meant to dazzle equally ignorant listeners.

Regulation and Kevin and Avonte's Law

The Politics of Autism discusses the problem of wandering, which is the topic of legislation before Congress.

Daniel Etcovitch writes at The Huffington Post about Kevin and Avonte's Law:

There’s an extra piece though: a bit of regulation of the technology comes along with making it available to more people. The bill calls for the Attorney General’s office, along with the Department of Health and Human Services, to devise best practices in relation to privacy and data collection for technologies that will track wandering children with developmental disabilities.
...
That’s the part of the discussion around Kevin and Avonte’s Law that is so amazing: it hasn’t been treated as controversial. Usually when the Attorney General’s office is given a mandate to develop practices for data collection, or is involved in regulating any kind of technology, there is uproar. Every relevant company, non-profit, and academic group chimes in. Debates erupt on forums, in the tech press, and in journals. That is just not happening with Kevin and Avonte’s Law.

Epidemic Pushback

In The Politics of Autism, I write about pushback against the disease frame:

Another signal was a 2013 public apology by Easter Seals after it sent out a mass email using the disease frame:  “On Tuesday, we sent you an email about autism and we owe you an apology. We called autism an epidemic and some of you called us out on our language. You're right. Autism is not an epidemic. Autism is not a public health crisis.”  In the same vein, Los Angeles Times journalist Michael Hiltzik walked back from language that he used in a 2014 story.   “I have been taken to task, properly, for referring to autism above as `a terrible condition for its sufferers and their families.’ That's a narrow and ill-informed way of looking at a condition that many people on the autism spectrum feel has benefited their lives.” 

At Forbes, Emily Willingham writes that Minnesota Green Party chair Brandon Long is defending presidential candidate Jill Stein:

So how about that consultation with ASAN that Brandon Long says occurred? Like I said, I checked in with ASAN about it. This organization, which represents autistic people first and foremost—their motto is “nothing about us without us”—says it has been approached by numerous campaigns, from Clinton’s to Jeb Bush’s, and ASAN offers the same advice to any candidate who reaches out for them. In a statement to me about Stein’s remarks, the organization said:

We are deeply concerned by comments made referring to autism as a ‘public health calamity’ and ‘epidemic’, and the lack of any meaningful retraction of these remarks to date. Upon being approached, we communicated that concern, and made reference to longstanding policy priorities on autism and disability that have been shared with each candidate that has contacted us.

Along with ASAN, I and members of the autism community await that meaningful retraction and Jill Stein’s “platform positions on the issue.”

Vaccine Exemptions in Houston

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

As previous posts have noted, vaccine reluctance is often high in educated, affluent areas.

Todd Ackerman and Rachael Gleason report at The Houston Chronicle:

The vaccine exemption rate in the Houston Independent School District may still be relatively low, but an interactive breakdown by individual campuses shows a striking thing: most of the highest totals are occurring at high performing schools that serve affluent populations.

As the Chronicle detailed Monday, the number of Texans who exempt their children from vaccination for non-medical reasons rose last year for the 12th straight year. The increase brought the number to nearly 45,000, still less than 1 percent of the state's roughly 5.5 million schoolchildren but 19 times more than the 2003 amount. That was the first year after a new state law allowed parents to decline state immunization requirements for "reasons of conscience."

The numbers aren't high enough to threaten herd immunity, the idea that vaccination of a significant portion of a population provides a measure of protection for those individuals without immunity to a contagious disease. But public health officials fear clusters of "anti-vaxxers" could leave many children vulnerable, particularly those with medical conditions that prevent vaccination and those too young to be vaccinated.

Scientific American Weighs In Against Trump

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  

An editorial in Scientific American:

Scientific American is not in the business of endorsing political candidates. But we do take a stand for science—the most reliable path to objective knowledge the world has seen—and the Enlightenment values that gave rise to it. For more than 170 years we have documented, for better and for worse, the rise of science and technology and their impact on the nation and the world. We have strived to assert in our reporting, writing and editing the principle that decision making in the sphere of public policy should accept the conclusions that evidence, gathered in the spirit and with the methods of science, tells us to be true.

It won't come as a surprise to anyone who pays even superficial attention to politics that over the past few decades facts have become an undervalued commodity. Many politicians are hostile to science, on both sides of the political aisle. The House Committee on Science, Space, and Technology has a routine practice of meddling in petty science-funding matters to score political points. Science has not played nearly as prominent a role as it should in informing debates over the labeling of genetically modified foods, end of life care and energy policy, among many issues.

The current presidential race, however, is something special. It takes antiscience to previously unexplored terrain. When the major Republican candidate for president has tweeted that global warming is a Chinese plot, threatens to dismantle a climate agreement 20 years in the making and to eliminate an agency that enforces clean air and water regulations, and speaks passionately about a link between vaccines and autism that was utterly discredited years ago, we can only hope that there is nowhere to go but up.

Disability and the Election

In The Politics of Autism, I discuss the role of this issue, along with broader concerns about disability, in presidential campaigns.  A recent post noted that the thing that bothers people most about Trump is his mockery of a disabled reporter.  One reason for this concern is that so many Americans either have a disability or know someone who does.

At Rutgers, Lisa Schur and Douglas Kruse have a paper titled "Projecting the Number of Eligible Voters with Disabilities in the November 2016 Elections."  Major findings:

• A projected 35.4 million people with disabilities will be eligible to vote in the November 2016 elections, representing close to one-sixth of the total electorate. 
• The number of eligible voters with disabilities has increased 10.8% since 2008, compared to an increase of 8.5% among eligible voters without disabilities. 
• There will be 62.7 million eligible voters who either have a disability or have a household member with a disability, more than one-fourth of the total electorate. 

California Vax Law Goes Into Effect, and Faces Court Challenge

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

Loretta Kalb reports at The Sacramento Bee:

Scores of Sacramento area students were sent home from school this week after they showed up for kindergarten and seventh grade without proof of vaccination.

In the Folsom Cordova Unified School District, 145 students out of about 3,200 starting kindergarten and seventh grade were sent home Tuesday on the first day of school for lack of immunization records, according to spokesman Daniel Thigpen.

A new state law that took effect July 1 eliminated personal- and religious-belief exemptions for families that opted to avoid vaccinations for their children. Under the new law, students entering the two checkpoint years of kindergarten and seventh grade are now required to show proof of vaccination. The requirement also applies to students who transfer into a district.

Jane Meredith Adams reports at EdSource:

 A federal judge in San Diego on Friday said he will take at least a week before ruling on a request to temporarily stop California’s new vaccination law, an unwelcome delay for vaccination opponents seeking a speedy injunction that would allow students who don’t meet vaccination requirements to start the new school year.

Judge Dana Sabraw said he was aware of the urgency of his ruling and asked about start dates for California schools, according to courtroom observers. Some schools in California have already opened their doors and the Los Angeles Unified School District, the largest district in the state, will begin school Aug. 16. Sabraw said he would likely issue a ruling the week of Aug. 22.

Rebecca Estepp, spokeswoman for Education 4 All, a Sacramento-based advocacy group that requested the temporary restraining order as part of its lawsuit seeking to overturn the law, called the delay “unfortunate” but somewhat understandable. “It’s a complicated topic,” she said. She described Sabraw’s manner during the oral arguments as “very thorough and very thoughtful” and said, “It was a fair hearing.”

The Politics of Insurance Mandates: Comparing North Carolina and California

The Politics of Autism includes an extensive discussion of insurance.

At Harvard Law & Policy Review, Ariana Cernius has an article titled "No Imbecile at All": How California Won the Autism Insurance Reform Battle, and Why Its Model Should be Replicated in Other States."  The abstract:

Autism is the fastest growing developmental disability in the United States today, with the Center for Disease Control and Prevention (CDC) reporting the incidence of autism at one in sixty-eight children. The cause and cure of autism remain unknown. Because autism affects each person at a different level of severity, a large number of symptom presentations are possible, making treatment difficult and costly. Despite the existence of effective, evidence-based early intervention treatments such as Applied Behavioral Analysis (ABA) therapy, which has lasting, long-term benefits and has been shown to improve functioning while reducing lifetime costs, the growing prevalence of autism has been declared a public health crisis by many states because those with autism who do not receive enough or any treatment are more dependent on society and have been recently estimated to cost $236 billion in care from childhood through adulthood. Due to receding state budgets, many states are not able to adequately address the autism population’s early intervention treatment needs through state-funded programs. Further, since health insurance did not cover treatment for autism until the Autism Insurance Reform Mandates that are the subject of this Note, families could not get treatment for their children with autism unless they were able to pay out-of-pocket. To provide a secure means of accessing treatment for people with autism, as of October 2015, forty-three states and Washington, D.C., have enacted autism insurance reform mandates requiring health insurance coverage of treatment for autism. While widespread existence of these mandates is surely progress and an acknowledgement of the problem, there is great legislative inconsistency among the mandates, which has created an imbalanced state of affairs for people with autism in the United States in that there are now some states that are better for autism families to live in than others. If the mandates are to accomplish their job of reducing the cost of the autism population to society in the long term, it matters equally as much that the appropriate evidence-based treatments are covered, and that the length of coverage is measured not by arbitrary criteria like age but by the continued efficacy of treatment, even if this means continued coverage through adulthood. Thus, there is still much work ahead to instill in society the notion that investing in the present to maximize the potential of the autism population will pay off in the long term for everyone in the country. This Note traces the issues that lead to the ongoing national autism insurance reform and offers insight as to how different modes of advocacy contributed to improving the lives of autism families in California, deemed one of the best states to live in for autism families. The goal of this Note is to compare how those strategies did or did not work in North Carolina, the most recent state to adopt a mandate, and to extend these lessons in social, political, and legal change to the remaining states that lack coverage or whose coverage could be improved in the states that currently provide coverage.

Happy to note that the article cites this blog.

Trump Pays a Price for Mocking a Disabled Person

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally -- including his shameful mockery of a disabled journalist. A previous post showed an ad highlighting this incident.  It has hurt his candidacy. Irin Carmon reports at NBC:

When asked in a recent Bloomberg poll what bothered them most about Donald Trump — of a slew of controversies — likely voters picked one action above all others:

When the candidate mocked a reporter with a disability last November.

Democrats have made sure the public has seen and heard about Trump's extended riff over and over again. It has been played in ads created by the Clinton campaign, including a highly-circulated one involving children silently watching, and by groups working on Clinton's behalf.

Bill Clinton even said in his convention speech that his wife "never made fun of people with disabilities. She tried to empower them based on their ability."

And Clinton surrogate Tom Harkin, a prominent voice on disability policy, said recently, "Democrats believe in working together and bringing people with disabilities in to develop policy. Donald Trump? He makes fun of people with disabilities. That's a throwback to a half a century ago."

About ABA

In The Politics of Autism, I write:

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding.  Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want.  ABA “works” in the sense that it helps some autistic people become more like their typically developing peers.  Most parents regard such an outcome as desirable, but not all people on the spectrum agree.  

Elizabeth Devita-Raeburn writes at The Atlantic:

Whether ABA is helpful or harmful has become a highly contentious topic—such a flashpoint that few people who aren't already advocates are willing to speak about it publicly. Many who were asked to be interviewed for this article declined, saying they anticipate negative feedback no matter which side they are on. One woman who blogs with her daughter who has autism says she had to shut down comments on a post that was critical of their experience with an intensive ABA program because the volume of comments—many from ABA therapists defending the therapy—was so high. Shannon Des Roches Rosa, co-founder of the influential advocacy group Thinking Person’s Guide to Autism, says that when she posts about ABA on the group’s Facebook page, she must set aside days to moderate comments.

...
Given the diversity of treatments, it’s hard to get a handle on the evidence base of ABA. There is no one study that proves it works. It’s difficult to enroll children with autism in a study to test a new therapy, and especially to enroll them in control groups. Most parents are eager to begin treating their children with the therapy that is the standard of care.
There is a large body of research on ABA, but few studies meet the gold standard of the randomized trial. In fact, the first randomized trial of any version of ABA after Lovaas’ 1987 paper wasn’t published until 2010. It found that toddlers who received ESDM therapy for 20 hours a week over a two-year period made significant gains over those who got the usual care available in the community.

That year, a report from the U.S. Department of Education’s What Works Clearinghouse, a source of scientific evidence for education practices, found that of 58 studies on Lovaas’ ABA model, only one met its standards, and another met them only with reservations.

Aging Caregivers

In The Politics of Autism, I write:

One California regional center serves 5,000 adult clients who live with their parents. “And every one of those clients will age,” says the center's executive director. “People who grew up in our system are now middle-aged, and their parents are older.” Adds Frances Gracechild, the executive director of Sacramento's Resources for Independent Living, “We have this phenomenon of aging parents with increasing need for support themselves, and they're still taking care of their grown developmentally disabled children. It's quite a burden to meet when you're facing your 70s.”

At Stateline, Jen Fifield writes of Beth Munro, 68, who cares for a severely disabled daughter.

About 860,000 people over 60 nationwide are in Beth’s place, caring for someone with intellectual or developmental disabilities in their home. And many are waiting, sometimes for years, for state-provided Medicaid help for their disabled child, sister or brother, such as placement in a group home, day services, or transportation or employment programs. If they can’t afford to pay for these services on their own, under the federal-state Medicaid system, their relative could end up in an institution.

As the number of older caregivers grows, and their need for help becomes more dire, a few states have passed laws to give older caregivers a chance to help decide where, and how, the person they care for will live. Tennessee passed a law in 2015 to ensure that anyone with an intellectual disability and a caregiver over 80 got the services they needed, and this year the state expanded the law to those with caretakers over 75. And in 2014, Connecticut passed a similar law that is helping about 120 people with a caregiver over 70.

But the waiting lists for needed services in these states and many others are still thousands of names long. In recent years, states such as Maryland, Virginia and Pennsylvania have put money into their budgets to try to chip away at the lists, and they get federal matching dollars to help pay for it. Some states are prioritizing people with urgent needs, while others are prioritizing students as they age out of school.

Vax Requirements Prevent Measles

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.  

At EdSource, Jane Meredith Adams reports that Mississippi has not had a case of measles since 1992, West Virginia since 2009. Now California joins them as the third state with strict vaccination school entrance rules. 

“It’s a good club to be in,” said Rahul Gupta, state health officer in West Virginia, who was effusive in welcoming California – home to more than eight times the number of children under the age of 18 as Mississippi and West Virginia combined – as a public health leader in school vaccinations, a role that the two Southern states have played for decades. “What we are seeing in West Virginia is a significant decline in vaccine-preventable diseases,” he said. “We expect the same in California.”

“We haven’t had a measles case in a schoolchild in decades,” said Thomas Dobbs, state epidemiologist in Mississippi, which has the highest school vaccination rate in the nation for measles, mumps and rubella with 99.7 percent of students receiving the immunization.
...
West Virginia instituted its vaccination requirements in 1987, has been strengthening them ever since and has never had a religious or personal belief exemption. Mississippi set its vaccination requirements in 1972, never had a personal belief exemption and ended its religious exemption in 1979, when the state Supreme Court ruled against such exemptions.

But in the ensuing decades, the fraudulent paper on the possible link between vaccinations and autism by Andrew Wakefield, a British doctor who was stripped of his medical license by a government review board, has sowed fear in parents and wreaked havoc on vaccination rates in Europe and, to a lesser extent, in the U.S. Both Gupta and Dobbs noted that it is far easier never to have had exemptions to vaccination requirements, or to have removed them decades ago, than to remove them in 2015 as California did.

The Education Department & Disciplinary Removals

In The Politics of Autism, I discuss the educational and civil rights of people with autism and other disabilities. 

The US Department of Education, Office of Special Education and Rehabilitative Services (OSERS) has a guidance letter on disciplinary removals:

Children with disabilities are at a greater risk of disciplinary removals that significantly interrupt their learning, often unnecessarily. These risks are increased for children of color with disabilities. In many cases, we have reason to believe these removals are due to minor instances of misbehavior that are unrelated to issues of child or school safety, and can and should be addressed through supports and guidance.

When behavioral supports are not provided and, as a result, a child with a disability is repeatedly removed from his or her current placement through suspensions for behavior that impedes his or her learning or that of others, a number of options are available to assist parents in challenging the appropriateness of their child’s IEP. First, as noted earlier, parents have the right to request an IEP Team meeting at any time, and public agencies generally must grant a reasonable parental request for an IEP Team meeting. Parents may be particularly interested in making such a request following changes in the child’s behavior that result in disciplinary removals. Further, parents, individuals, and organizations may also pursue child-specific or systemic remedies through the State complaint procedures outlined below.

When conditions persist and a denial of FAPE is suspected, a parent or a public agency may file a due process complaint to request a due process hearing on any matter relating to the identification, evaluation, or educational placement of a child with a disability, or the provision of FAPE to the child. 34 CFR §300.507(a). If the dispute cannot be resolved through the resolution process, the parent or public agency must have an opportunity for an impartial due process hearing. 34 CFR §§300.511(a), 300.512, 300.513 and 300.515.

A second important method for resolving disputes available under IDEA is the mediation process described in 34 CFR §300.506. The mediation process, which must be voluntary, offers a less formal opportunity for parents and public agencies to resolve disputes about any matter, including disciplinary removals, under 34 CFR part 300, including matters arising prior to the filing of a due process complaint. 34 CFR §300.506(a).

Lastly, States are also required to establish and implement their own State complaint procedures, separate from their due process procedures, for resolving any complaint that meets the requirements of 34 CFR §300.153. 34 CFR §300.151(a)(1). Any organization or individual, including one from another State, may file a signed written State complaint alleging that a public agency has violated a requirement of either Part B of the Act or the Part B regulations. Additional information regarding dispute resolution is available at: 

•  Questions and Answers on IDEA Part B Dispute Resolution Procedures, revised July 2013 (OSEP Memo 13-08) (http://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/acccombinedosersdisputereso lutionqafinalmemo-7-23-13.pdf); and

• Dear Colleague Letter on a public agency’s Use of Due Process Procedures After a Parent Has Filed a State Complaint, April 2015 (https://www2.ed.gov/policy/speced/guid/idea/memosdcltrs/dcl04152015disputeresoluti on2q2015.pdf)

A Bill to Help with Waiting Lists

In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.

A Friday release from Illinois State Senator Tom Cullerton:

State Senator Tom Cullerton’s initiative to help nearly 20,000 Illinois families on waiting lists for developmental disability services was signed into law today.

House Bill 6086, sponsored by Cullerton in the Senate, will require the state to take certain factors into consideration when determining which individuals will receive services, such as the amount of time spent already on a waiting list.

“Any time we can pass legislation to help our developmentally disabled population, it makes us a stronger and better state,” said Cullerton, a Villa Park Democrat.

House Bill 6086 is an initiative of Autism Speaks. The organization approached Cullerton for assistance because of the difficulty that families face when they spend a significant amount of time on the state’s Prioritization of Urgency of Need for Services (PUNS) waiting list to receive services for developmentally disabled family members.

“I would like to thank Senator Tom Cullerton and Gov. Rauner for being supportive of House Bill 6086,” said Mike Baker, volunteer state advocacy chairman for Autism Speaks. “I hope that it will be the first of many steps to expand and improve services for people with autism and all developmental disabilities in Illinois.”

PUNS is a statewide database with information about individuals with developmental disabilities who seek state services. The database does not function as a first-come, first-served service; enrollments are categorized by need, and families with immediate needs are served first.

House Bill 6086 passed the Senate and House with bipartisan support.

Stephanie Kifowit sponsored the bill in the Illinois House. 

How Vaccine-Autism Misperceptions Spread

At The International Journal of Communication, Jill A. Edy and Erin Risley-Baird have an article titled "Misperceptions as Political Conflict: Using Schattschneider’s Conflict Theory to Understand Rumor Dynamics." They examined online commentary about vaccines and autism. The abstract:

Publicly confronting political misperceptions enacts political conflict, generating communicative forms of public resistance as well as psychological resistance. Applying Schattschneider’s classic model of interest group political conflict to communication by those who publicly resisted messages debunking the misperception that vaccinations can cause autism offers insight into how misperceptions evolve and survive in public discourse. It also extends the model, establishing its relevance for contemporary forms of political conflict. Faced with debunking, believers socialize conflict, inviting audiences  o join the struggle on their side, and alter the debate’s terms such that discussion escapes  ontrol by authorities. The resulting political debate is a moving target with changing  tandards of evidence. Consequently, confronting political misperceptions may generate activism that encourages misperceptions to evolve and spread.

From the article:

The conflict over whether vaccines are linked to autism began as a scientific debate  mong medical professionals, but as misperception believers got involved, those professionals lost control of the fight. In seeking access to the conflict, the believer  ommunity redefined its logic. No longer could the debate be limited to the scientific merit of Wakefield’s study. Instead, personal experience competed with scientifically generated knowledge as the ultimate truth standard. Charges of spreading false or wrong  nformation were met with charges of denying personal freedom to question authority and speak out. The scientific community had lost control over the standards by which information was judged.

...

Understanding political misperceptions as cases of political conflict in which communication processes matter helps explain why misperceptions are so difficult to eradicate. Prior misperception research demonstrates debunking messages can produce substantial psychological resistance, but this analysis reveals the remarkable social dynamism of the rumoring process when confronted with authoritative debunking in the postmodern era. Communicative resistance to debunking messages is not a matter of stubbornly reiterating a misperception. It involves creative, persuasive discourse that modifies the misperception and shifts the relevant audience of potential believers. Viewed in this light, the search for a single message or type of message that would effectively debunk a misperception seems fruitless. Effective debunking, like rumoring itself, is likely a process that adapts to the changing social conditions in which discourse about the belief occurs. The problem is not simply the motivated reasoning of misperception believers. The discourse itself represents a moving target with no fixed standards of evidence or truth that might support factual debunking. When debunking messages are introduced into the discourse, the social dynamic of the conflict evolves to raise new questions and evoke different standards of evaluation (what Schattschneider would call altering the lines of cleavage) and to invite new participants (what he would call socializing).