Education Department Changes Course on Equity in IDEA

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

From the Office of Special Education and Rehabilitative Services:

Pursuant to the plain language of the December 19, 2016 Equity in IDEA regulation on significant disproportionality, and in conjunction with the March 7, 2019 decision in COPAA v. Devos, the Department expects States to calculate significant disproportionality for the 2018–2019 school year using the 2016 rule’s standard methodology, or to recalculate using the 2016 rule’s standard methodology if a different methodology has already been used for this school year.

Christina Samuels at Education Week:

The implementation whipsaw is expected to cause problems for states that had relied on the delay of the policy, which relates to disproportional representation of minorities in special education. And these new rules could affect how millions of dollars in federal special education funds are spent at the district level.

The National Association of State Directors of Special Education said that it was "deeply disappointed" in the Education Department's "abrupt" actions, which were announced in a short notice dated May 20 on the department's website. The announcement offers no timetable or additional resources for states.

"A new requirement of this magnitude deserves communication directly from the Department of Education with those responsible for implementation. Moreover, conflicting and untimely direction from the Department is not helpful, nor does it create an effective or efficient means to serve the nation's students with disabilities," said John Eisenberg, the executive director of the special education administrators group, in a statement.

Undercover Moms v. Autism Quacks

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

Brandy Zadrozny at NBC:

When they aren’t working or taking care of their autistic children, Melissa Eaton and Amanda Seigler are moles.

Eaton, 39, a single mother from Salisbury, North Carolina, and Seigler, 38, a mom to six in Lake Worth, Florida, have spent much of their free time in the last three years infiltrating more than a dozen private Facebook groups for parents of autistic kids. In some of these groups, members describe using dubious, dangerous methods to try to “heal” their children’s autism — a condition with no medically known cause or cure.

The parents in many of these groups, which have ranged from tens to tens of thousands of members, believe that autism is caused by a hodgepodge of phenomena, including viruses, bacteria, fungal infections, parasites, heavy metal poisoning from vaccines, general inflammation, allergies, gluten and even the moon.

The so-called treatments are equally confused. Some parents credit turpentine or their children’s own urine as the secret miracle drug for reversing autism. One of the most sought-after chemicals is chlorine dioxide — a compound that the Food and Drug Administration warns amounts to industrial bleach, and doctors say can cause permanent harm. Parents still give it to their children orally, through enemas, and in baths. Proponents of chlorine dioxide profit off these parents’ fears and hopes by selling books about the supposed “cure,” marketing the chemicals and posting how-to videos.

...
 Horrified by the treatment of these children, Eaton and Seigler research the parents online to determine their identity and location, then send screenshots of the Facebook posts to the local Child Protective Services division, though they rarely hear back on whether action was taken. The pair say they’ve reported over 100 parents since 2016. They also report the posts to Facebook and have submitted their findings to the Food and Drug Administration, the Department of Justice and child abuse organizations.

880

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.

From CDC: "From January 1 to May 17, 2019, 880 individual cases of measles have been confirmed in 24 states. This is an increase of 41 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."

Lena Sun and Ben Guarino at The Washington Post:

In a suburban shopping center an hour north of New York City, hundreds of mostly ultra-Orthodox Jews gathered in a sex-partitioned ballroom to hear leaders of the national anti-vaccine movement.

Sustained applause greeted Del Bigtree, a former television producer-turned-activist who often wears a yellow star of David, similar to those required of Jews in Nazi Germany, to show solidarity with parents ordered to keep unvaccinated children at home.

Bigtree described the purported dangers of childhood vaccines in phrases that also conjured the Nazis.

“They have turned our children into the largest human experiment in history — all of history,” he said.

The turnout last week in this suburb hard hit by measles helps explain why New York has become Ground Zero in one of this country’s largest and longest-lasting measles outbreak in nearly 30 years. Even in a religious community grappling with more than 700 cases in Rockland County and New York City since last fall — among them, children on oxygen in intensive care units — anxious and confused parents said they came because they are afraid of vaccines and seeking guidance about what to do.

.,.
Ethan, a 36-year-old father of six from Queens who declined to give his last name, said he attended the event out of “a genuine concern” for his family, driven by his wife’s research into vaccines. She had read “a lot of literature” and watched Bigtree’s film, which accuses the government of covering up a purported link between the measles vaccine and autism — a tie repeatedly disproved by studies around the world involving hundreds of thousands of children.

Little Progress on Curbing Vax 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.

Michael Ollove at Stateline:

Despite the worst measles outbreak in decades, few state legislatures this year have reconsidered the exemptions that families use to avoid inoculating their children.
As many legislative sessions wind down, only Washington state, which has had one of the highest numbers of measles cases, has sent a measure to the governor’s desk.
...
Every state allows schoolchildren to skip inoculations for medical reasons, such as a compromised immune system or an allergy to a vaccine’s components. And all but three states — California, Mississippi and West Virginia — also give passes to families who claim personal or religious objections to vaccinations.

In many states, that number has been growing. For example, the Houston Chronicle reported this week that nonmedical exemptions granted in Texas rose 14% in 2018-2019, continuing a 15-year upward trajectory.

To be sure, the current outbreak began after most state legislative sessions were underway. But proposals to scale back exemptions that did emerge faced vehement opposition from “anti-vaxxer” groups, which scuttled them in several states.

Dr. Sean O’Leary, a Colorado pediatrician who serves on the infectious diseases committee of the American Academy of Pediatrics, blamed such groups for the failure of a bill in his state.

“The anti-vax groups are loud and pretty organized and have worked for years,” he said.

They were organized in Oregon, at Aubrey Wieber reports at The Salem Reporter  that legislation to end non-medical exemptions died in the state senate.

[P]olitical spending reports filed with the state Elections Division show that the political action committee of one of the groups most active against HB 3063, Oregonians for Medical Freedom, has received nearly $160,000 in political donations since. A good chunk of that money — $87,443 — came from Portland venture capitalist Jonathan Handley and his wife Lisa. They haven't contributed since 2017.

The Handleys' son was diagnosed with autism and Jonathan Handley wrote a book about a connection between autism and vaccines. Over the years there have been many reports and theories on a connection between vaccines and autism, but the scientific community has repeatedly debunked them.

...

Oregonians for Medical Freedom is based in Hillsboro and was registered as a nonprofit last February by the law private firm of Andrew Downs, who also serves as legal counsel for the Senate Republican office.

...
The term "medical freedom" is inherently political. It originated in libertarian circles and is a term used by famed libertarian Ron Paul. Similarly minded groups in several states use the term medical freedom or something similar.

...
Sen. Sarah Gelser, D-Corvallis, said she is worried the success of the opponents could become a playbook for other issues. The opposition pulled people from all walks of life. Some, Gelser said, were pleasant and respectful... Others, she said, made physically and sexually violent threats, wearing the yellow stars of David and making analogies to gas chambers, communism and Jim Crow laws. "I got this heinous email about being raped and being raped harder," Gelser said. "In the past 24 hours, I have been called a turd sandwich, a whore, the C-word, I have been invited to lick, suck and bite various body parts, some of which I've never heard of."

...

 One of those who became a regular at the Capitol was Raisa Piatkoff of the Russian Old Believer community in Woodburn. Her community is against the bill for religious reasons.

Prevalence and Outcomes in Adults

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

At Autism Research, John Elder Robison has an article titled "Autism Prevalence and Outcomes in Older Adults."

The lay summary:

Public policy toward autistic people is driven by data. Most autism data to date have been derived from and about children, because autism tends to be identified and supported in the public school system. This has created a public perception of autism as a childhood problem. In fact, autism is a lifelong difference or disability, and recent studies suggest serious overlooked concerns for autistic adults. This commentary discusses how we have evaluated adult autism so far, limitations of our knowledge, and how we might evaluate adult needs going forward. The commentary makes a case for specific new adult prevalence and outcome studies to inform public policy.

From the article:

When discussing autism in public policy our first question might be how many adults are actually at risk? The fact is, we do not know the size of our adult autistic population, and we do not know if the outcome data we have is broadly applicable, or only applies to the subset profiled by the studies. The arguments that it does not apply are just as strong as those that it does.
...
Amazingly, there is only one large‐scale study measuring adult prevalence. In 2011, Terry Brugha of the University of Leicester evaluated autism prevalence in a British community [Brugha et al., 2011]. That project was based on a survey of 7461 adults and looked at rates of autism and social attainment. Perhaps the most significant finding was that the rate of autism was not age‐dependent, but the rate of existing diagnosis was. Brugha et al. [2011] found a fairly constant prevalence independent of year of birth. The older the study participant, the less likely they were to have been previously diagnosed with autism.

The finding that most older adults were not originally diagnosed with autism is consistent with anecdotal accounts of older autistic people ...If those and the Brugha et al. [2011] data are a guide, there are many older autistic adults who are unaware they would be on the autism spectrum if evaluated today. Brugha et al. [2011] found very high rates of autism among older adults previously diagnosed with learning disabilities, and they found a large number of autistic people living in group or institutional settings. Neither of those findings are surprising.

According to Brugha et al. [2011], with our current best estimates of prevalence, roughly one in 50 men, or one in 75 people of all ages are on the autism spectrum.

...
Adult outcomes range from institutionalization to invisibly blending into the community, yielding a colossal range of implications for supports and services. If we are to have an informed autism policy, we need accurate data characterizing autistic adults. What studies like Croen et al. [2015] show is that the diagnosed (and therefore identifiable) older adult autistic population has an alarming set of problems, but Brugha and other findings suggest they are only a small percentage of the actual adult population. We do not know anything of the health of the rest. To accurately survey the medical issues of all autistic adults, we must identify a broad enough swath to describe the population. That probably means conducting a larger scale study like Brugha et al. [2011] in the U.S.

• Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J., … Meltzer, H. ( 2011).Epidemiology of autism spectrum disorders in adults in the community of England. JAMA Psychiatry, 68( 5), 459– 465. https://doi-org.ccl.idm.oclc.org/10.1001/archgenpsychiatry. Google ScholarFull Text
• Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. ( 2015). The health status of adults on the autism spectrum. Autism, 19( 7), 814– 823. https://doi-org.ccl.idm.oclc.org/10.1177/1362361315577517.CrossrefPubMedWeb of Science®Google ScholarFull Text 

Antivax Acquiescence = Complicity

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.

Editorial in The Houston Chronicle:

Let’s not reserve our outrage for the likes of Jonathan Stickland, the buffoonish far-right Texas House member from Bedford who attacked a prominent infectious disease expert on Twitter recently and equated Dr. Peter Hotez’s life-saving vaccine research to “sorcery.”

Let’s save some ire for folks who know better and say nothing.

Gov. Greg Abbott and legislative leaders in Austin surely know that Texas has seen a 2,000 percent increase in vaccine exemptions since 2003, the year we began allowing parents to decline required immunizations for non-medical reasons. Texas saw a 14 percent increase last year alone.

... 

We hope Abbott and the others saw the story Friday by the Chronicle’s Todd Ackerman on a study showing Harris County is one of the nation’s most vulnerable counties to an outbreak of the highly contagious, potentially fatal virus that was largely eradicated two decades ago.

Why? International travel mixed with the dangerous prevalence of parents opting out of once-mandatory shots for their children, according to the journal Lancet Infectious Diseases.

Yet, Abbott and others say little to counter the myths invented in debunked scientific research, half-truths and conspiracy theories of the growing anti-vaccine movement.

In 2015, spokeswoman Amelia Chasse said in a Chronicle story that the governor recognized the public health benefits of vaccines and encouraged all parents to have their children vaccinated, as he and the first lady did with their daughter.

But Abbott “supports current Texas law that he believes strikes the right balance of requiring vaccinations while still allowing parents to opt out under certain circumstances,” Chasse added.

Due Process: Grim Odds in Maryland

In The Politics of Autism, I write about litigation under the Individuals with Disabilities Education Act. School districts prevail in most due-process hearings.  Here are some reasons:

School districts have built-in expert witnesses in the form of teachers and staff.  They also have full access to all relevant information about a proposed placement, and often deny parents access to those programs in advance of hearings. When parents’ experts can observe children in class, districts can limit their observations.   More important, parents have to foot the bill for their experts because of a 2006 Supreme Court decision that IDEA does not authorize reimbursement of witness fees. “While authorizing the award of reasonable attorney's fees, the Act contains detailed provisions that are designed to ensure that such awards are indeed reasonable,” Justice Alito wrote for the majority. “The absence of any comparable provisions relating to expert fees strongly suggests that recovery of expert fees is not authorized.” It goes without saying that this decision disadvantages all parents, and especially those with modest incomes. 

Talia Richman at The Baltimore Sun:

It’s rare for the parents of students with disabilities to prevail in legal battles against Maryland school districts. In the past five years, they’ve lost more than 85 percent of the time, state education department documents show, even after investing tens of thousands of dollars and countless hours in pursuit of a better education for their children.

 ...
Other states avoid such asymmetrical rates. [NOT CALIFORNIA, THOUGH. -- ed.]A study examining due process hearings in Texas found districts prevailed in roughly 72 percent of cases from 2011 to 2015. A similar assessment in Massachusetts found school districts won in a little more than half of the due process hearings over eight years.   

... 

Some researchers believe districts prevail much more often because they have far greater legal and financial resources than a family does. Another explanation special education experts offer is the districts will attempt to resolve cases that are less likely to be won and go to a hearing only if they are supremely confident in their chances. Others believe judges give deference to the judgment of district officials.

“It’s always been a David and Goliath issue,” said special education attorney Selene Almazan.

Project HEAL produced a report analyzing each of the 105 due process hearings from fiscal year 2014 to the second quarter of fiscal year 2019, most of which were initiated by the parents.

Judges sided with school districts in all but 14 cases. No parents won if they represented themselves.


...