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Thursday, June 30, 2016

Judge Blocks Indiana Abortion Law

In The Politics of Autism, I explain:
When a pregnancy is under way, doctors can detect certain kinds of disorders, but neither amniocentesis nor any other prenatal test can currently tell us whether a fetus will become autistic. Suppose that such a test did exist. “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80 percent likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioral approach,” says leading autism scientist Simon Baron-Cohen. But would the “best case use” be the most common? When amniocentesis indicates Down Syndrome, most mothers choose abortion. A study of autism parents in Taiwan found that just over half would abort if a prenatal test indicated that their next child would be autistic. We cannot be sure what the figures would be if such tests were available in the United States, but it seems likely that a large share of autism pregnancies would end in abortion.
At The Huffington Post, Kim Bellware reports on a ruling concerning an Indiana law that would have prevented such abortions.
U.S. District Judge Tanya Walton Pratt on Thursday granted a preliminary injunction sought by Planned Parenthood of Indiana and Kentucky [PPINK] to prevent the regulation from taking effect Friday on the grounds the law was unconstitutional and invaded women’s privacy.

Pratt’s order cited Monday’s major U.S. Supreme Court ruling that struck down restrictions in a Texas abortion law. 
Indiana Gov. Mike Pence (R) in March signed a controversial law that imposed new regulations and restrictions on abortion, including a so-called anti-discrimination clause. Indiana and North Dakota are the only states that have laws banning abortion for issues like genetic abnormality.
 Indiana University joined the PPINK lawsuit over a provision of the law that sought to control how fetal tissue was transferred and disposed of. 
The university, which conducts research on conditions like autism and Alzheimer’s using fetal tissue, argued that a professor transferring out of state with their research would be unable to do so without committing a felony under the law. 

The Supreme Court and Service Animals

In The Politics of Autism,  I discuss court cases under the Individuals with Disabilities Education Act and other statutes.

Lyle Denniston reports at SCOTUSblog:
The Justices will take on a significant new test of the right to sue for parents of a disabled child who needs assistance while attending schools that receive federal funds. The issue in a case from a small Michigan community (Fry v. Napoleon Community Schools) is whether a disabled child’s family must first try to work out with school officials a dispute over the assistance their child needs, before the parents may sue for damages under federal anti-discrimination law. The dispute in the case involves a claim by a disabled girl’s family that the school would not allow her to bring a service dog to help her during her classes. The Justice Department, asked by the Supreme Court for its views, urged the Justices to hear the case.

Wednesday, June 29, 2016

An Argument for Electrical Stimulus Devices

In The Politics of Autism, I write:
For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others. Though a majority of the FDA’s Neurological Devices Panel said that such devises pose “an unreasonable and substantial risk of illness or injury,” the agency had not banned them as of 2014.
At The Wall Street Journal, Harvard professor Paul Peterson argues against the proposed FDA ban on electrical stimulus devices, citing the example of his own 45-year-old son David.
Denying treatment to people with disabilities when it is available to others violates the equal protection clause of the 14th Amendment. In its 1997 ruling in Judge Rotenberg Educational Center Inc. v. Commissioner of the Department of Mental Retardation, the Massachusetts Supreme Judicial Court unanimously affirmed a lower-court finding of contempt against the Commonwealth of Massachusetts for its interference with the use of electronic stimulus devices. The FDA’s proposal ignores that decision.

The FDA claims that alternative treatments are available. It is wrong. After trying many other institutions and therapies, including the drugs Mellaril, Thorazine, Haldol, Ritalin and Noctec, David in 1988 entered the highly regarded Neurobehavioral Unit at the Kennedy Krieger Institute that specializes in the treatment of self-injurious behaviors. Specialists explored a wide variety of treatment protocols, including various drug therapies. After four months, the center’s experts, finding no effective alternative, agreed that placement at the Judge Rotenberg Educational Center was the best available option for David. Our local school district authorized the placement.
The FDA asserts that skin shocks are no longer necessary but it provides no documentation that drugs are effective for people like my son. In the past, drug therapy aggravated David’s self-injurious behavior. The use of psychotropic drugs also poses multiple risks of physical and psychological side effects. By contrast, skin shocks have no demonstrated side effects beyond a temporary redness to the skin that usually disappears within minutes.

Tuesday, June 28, 2016

United Healthcare and ABA

The Politics of Autism includes an extensive discussion of insurance.

A release from United Healthcare:
Applied Behavior Analysis (ABA) is a type of intensive behavioral treatment for autism spectrum disorder. Coverage, when available, is provided through the plan’s mental health benefits. ABA treatment is generally focused on the treatment of core deficits of autism spectrum disorder, such as maladaptive and stereotypic behaviors that are posing danger to self, others or property, and impairment in daily functioning.

Types of services may include diagnostic evaluations/assessments, treatment planning, treatment and/or other procedures, medication management, individual, family and group therapy. Provider-based case management services or crisis intervention typically may be provided by a board-certified behavior analyst under appropriate supervision.

What is Changing?
UnitedHealthcare currently covers ABA for the treatment of autistic spectrum disorder for our fully insured commercial membership where required by law and for self-funded plans that elect to include ABA benefit coverage.
Beginning on or after Jan. 1, 2017, UnitedHealthcare will be extending ABA benefit coverage to new and renewing fully insured small and large group plans in the few remaining states that do not mandate ABA coverage. ABA is subject to clinical management. However, self-funded plans with SBC do not include outpatient clinical management.

UnitedHealthcare recommends that self-funded plans that currently exclude ABA consider removing that exclusion at next renewal.

Consistent with this change, UnitedHealthcare will also retire its commercial medical policy on ABA. Going forward, coverage for ABA will be managed using Optum guidelines where supported by the benefit plan.

Why is UnitedHealthcare Making this Change?
We recognize the growing interest in ABA among many consumers and in the marketplace. In fact, as of May 2016, 46 states plus the Virgin Islands mandate ABA coverage for the treatment of autism.

Unrelated to state insurance mandates a growing number of fully insured and self-funded plans are providing coverage for ABA based on member demand and other market forces. We are also aware of at least one self-funded plan targeted with a lawsuit challenging a blanket exclusion of ABA as a violation of federal mental health parity rules.

How will this Affect a Client’s Self-funded Plan?
On Jan. 1, 2017, coverage for ABA under a self-funded plan will be provided if the plan does not expressly exclude ABA.
Self-funded plans that expressly exclude benefit coverage for ABA but who want to include ABA should modify their plans to remove the express
exclusion.UnitedHealthcare recommends that self-funded plans seek guidance from their benefit consultants about modifying their plans to provide coverage for ABA based on Optum’s guidelines.
Self-funded plans that do not expressly exclude benefit coverage for ABA and wish to continue excluding Applied Behavioral Analysis, must now modify their plans to expressly exclude it.

Thursday, June 23, 2016

Shadow Minister

In The Politics of Autism, I discuss the neurodiversity movement. 
Matthew Weaver reports at The Guardian:
A blogger who writes about living with autism, dyslexia and dyspraxia after spending 20 years on incapacity benefit has persuaded the Labour party to appoint a shadow minister for neurodiversity
Monique Craine wrote an open letter to Jeremy Corbyn urging him to help end the discrimination suffered by an estimated one in five of the population who have some form of neurological condition.

She never expected the suggestion to be taken seriously. But nine months later the shadow chancellor, John McDonnell, has pledged to take up the cause as part of Labour’s ambition to champion grassroots reforms.

Antipsychotic Drugs

In The Politics of Autism, I write about medical and scientific research.

About one in ten youths treated with an antipsychotic are diagnosed with autism spectrum disorder or intellectual disability. Conversely, one in six youths diagnosed with autism spectrum disorder has been prescribed antipsychotics. These findings are reported in the June 2016 issue of the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP). Furthermore, the results suggest that the proportion of adolescents with autism or intellectual disability has increased among youths treated with antipsychotics and that more youths with autism or intellectual disability have received antipsychotics.
Currently, second-generation antipsychotics are the only FDA-approved medications for youth with autism. However, these are approved only for the symptomatic control of irritability and aggression. They do not have an indication for youth with intellectual disability, and they do not seem to affect the core symptoms of autism spectrum disorders, such as social and communication difficulties, or the core symptoms of intellectual disability, such as problems with understanding and responding appropriately to information from the outside world.
Performing a meta-analysis of 39 studies and over 350,000 youth with mental illness, a group of researchers led by Christoph U. Correll, MD, of Hofstra Northwell School of Medicine, examined the frequency and time trends of antipsychotic prescribing in youth with autism spectrum disorders or intellectual disability, mostly drawing on data from large registry-based studies.
“Although the increased prescribing of antipsychotics in youth with autism spectrum disorders or intellectual disability cannot be judged as appropriate or inappropriate based on database studies, side effects of antipsychotics can be quite problematic, especially in children and adolescents,” said Correll. “Therefore, clinicians should perform very careful risk: benefit evaluation before and after starting youth with autism spectrum disorders or intellectual disability on an antipsychotic, always trying to maximize non-pharmacologic interventions as well as pharmacologic or non-pharmacologic treatments for comorbidities, including attention-deficit/hyperactivity disorder, anxiety disorders, obsessive-compulsive disorder, and sleep disorders.”
Based on the study results and the known adverse effects of antipsychotics, the authors concluded that clinicians should consider using psychosocial interventions that are proven to be efficient for behavioral dysregulation such as irritability and aggression, before prescribing antipsychotics to adolescents with autism or intellectual disability. The authors further stressed that when prescribing antipsychotics, it is imperative to regularly monitor both their efficacy and tolerability in patients through body weight, fasting lipids and glucose, extrapyramidal side effects, sedation, and sexual/reproductive adverse effects, and to manage abnormalities appropriately.
Notes for editors
The article is “Antipsychotic Use Trends in Youth With Autism Spectrum Disorder and/or Intellectual Disability: A Meta-Analysis” by Su Young Park, Chiara Cervesi, Britta Galling, Silvia Molteni, Frozan Walyzada, Stephanie H. Ameis, Tobias Gerhard, Mark Olfson, and Christoph U. Correll (doi: 10.1016/j.jaac.2016.03.012). It appears in the Journal of the American Academy of Child and Adolescent Psychiatry, Volume 55, Issue 6 (June 2016), published by Elsevier.

Tuesday, June 21, 2016

Neurodiversity and Silicon Valley:

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

Michael Bernick writes at Fox and Hounds:
On the morning of June 6, over 200 neurodiversity advocates from around the country gathered at the Microsoft campus in Mountain View, for the “Neurodiversity in the High Tech Workforce” conference. The event demonstrated the growing heft of the movement, while also indicating some of the tough questions that lie ahead if the movement is to yield greater results.
Yet, despite the positive, the conference reinforced certain tough questions about employment that the neurodiversity movement will need to address in California and elsewhere if it is to move to the next level. Chief among these are the following four:
Why aren’t more companies, especially tech companies, adopting the active neurodiversity efforts of SAP and Microsoft? Diversity is a frequently-heard phrase throughout the Silicon Valley today, with companies creating or expanding diversity departments. For the most part this diversity is focused on race, ethnicity and gender categories. The diversity push though has yet to embrace neurodiversity.
Does the talk of neurodiversity and workforce culture have any meaning? Reference was made at the conference to developing a workplace culture of greater inclusion for neurodiverse adults—a culture of greater flexibility and patience. But few specifics were given. What is the more flexible workplace culture envisioned? How is to be achieved?
Does a percentage of the neurodiverse population really possess unusual talents that can be better utilized in the job market? Reference also was made at the conference to the special skills possessed by neurodiverse adults—skills of pattern recognition and memory recall among adults on the autism spectrum, skills of hyper-focus among adults with ADHD, spatial thinking skills among adults with dyslexia. But how widespread are these skills? And how are they connected to individual job openings?
What of the majority of the neurodiverse population who may not possess unusual skills, where do they fit into the job market? While neurodiverse adults, like Mark Jessen of SAP, possess unusual tech skills formerly overlooked, it may be that the majority of neurodiverse adults do not possess these skills. Nearly all express a desire to work and a frustration of their current situation. How can they be better fit into the job market? Is there a role for a form of public service employment for the neurodivers.

Monday, June 20, 2016

Toxic Waste and Autism

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:
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. 
At Northwestern  University, Claudia Persico, David Figlio, and Jeffrey Roth have a working paper titled "Inequality Before Birth: The Developmental Consequences of Environmental Toxicants."  The abstract:
Millions of tons of hazardous wastes have been produced in the United States in the last
60 years which have been dispersed into the air, into water, and on and under the ground.
Using new population-level data that follows cohorts of children born in the state of
Florida between 1994 and 2002, this paper examines the short and long-term effects of
prenatal exposure to environmental toxicants on children living within two miles of a
Superfund site, toxic waste sites identified by the Environmental Protection Agency as
being particularly severe. We compare siblings living within two miles from a Superfund
site at birth where at least one sibling was conceived before or during cleanup of the site,
and the other(s) was conceived after the site cleanup was completed using a family fixed
effects model. Children conceived to mothers living within 2 miles of a Superfund site
before it was cleaned are 7.4 percentage points more likely to repeat a grade, have 0.06 of a standard deviation lower test scores, and are 6.6 percentage points more likely to be
suspended from school than their siblings who were conceived after the site was cleaned.
Children conceived to mothers living within one mile of a Superfund site before it was
cleaned are 10 percentage points more likely to be diagnosed with a cognitive disability
than their later born siblings as well. These results tend to be larger and are more
statistically significant than the estimated effects of proximity to a Superfund site on birth outcomes. This study suggests that the cleanup of severe toxic waste sites has significant positive effects on a variety of long-term cognitive and developmental outcomes for children.
From the paper:
Children conceived before cleanup were 10 percentage points more likely to be diagnosed with a cognitive disability than their siblings conceived after the site was cleaned. In addition, there is a small suggestive increase in the likelihood of being diagnosed with autism within one mile of a Superfund site for the siblings who were conceived before or during cleanup, relative to their siblings conceived after cleanup.
The estimates of the likelihood of repeating a grade, having lower test scores, or having a
behavioral incident are also somewhat stronger than the estimates for the two mile radius. However, an important caveat is that the likelihood of having a behavioral incident and autism results are sensitive to the type of specification and distance used to estimate them.

Saturday, June 18, 2016

Trump v Disability

Jonathan Young writes at The Hill:
Trump is notorious for noxious statements about Latinos (“criminals,” “rapists”), women (“ugly,” “pigs”), Muslims (“terrorists”), and others. Trump sows divisions between “us” and “them.” Trump divides people based on their bodies. Only “hot” women have value in Trump’s world. He presumes that all people with shared racial or ethnic backgrounds or religious beliefs can be defined as groups rather than their individual merits: the textbook definition of racism one might say. 
This categorical thinking threatens disability rights even though Trump rarely speaks of disability. Trump speaks about a discredited claim that vaccines cause autism. He derides the “disability racket” in Time to Get Tough. “On and on, scam after scam it goes,” says the founder of Trump University about income support for people with disabilities. Trump apparently would simply prefer that disabled people weren’t around to take his money.

Friday, June 17, 2016

Texas, Medicaid, ABA, and Licensure

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

The Texas Tribune has a report from Kate Harrington of Kaiser Health News:
In 2014, CMS advised states that they must cover medically necessary care for Medicaid-eligible children with autism up to age 21. Advocates say that includes therapies a doctor deems necessary for a child, including behavioral analysis, which uses positive reinforcement to encourage behavioral modification and can run from $60 to $150 an hour.
Some states – California, Virginia and Maine, for example – needed very little prodding to put policies in place. Others, including Ohio and Florida, did so only after being hit with court suits.
Shylo Bundy sought Medicaid for her daughter, and got a reversal of a denial.
After her success, Bundy began a pro bono effort to help a handful of other families get Medicaid coverage, too.
In 2015, she and others were having regular meetings with legislators and Texas Health and Human Services officials. Bundy said she thought state officials were gearing up to add behavioral therapy to standard Medicaid coverage for children with autism, which generally includes occupational, speech and physical therapy.
But that stopped after the Legislature last year did not pass a bill to license behavioral therapists. Legislators opposed licensure for several professions, saying it was overregulation. Shortly afterward, the state stopped covering autism behavioral therapy.

“The state had said what would make them feel better about Medicaid covering ABA was if [therapists] were licensed,” Bundy says. “It’s not required under Medicaid law, and many other states provide ABA without licensure. But we were working on getting a licensure bill passed. When it didn’t pass, the state cut all those people off [from ABA].”

Bundy says that the state had approved only 10 children for the therapy – including her daughter — and all but two were left without the therapy. State officials have not made clear why coverage continues for those two.

Thursday, June 16, 2016

Help for Military Families

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

A news release from Rep. Tom Rooney (R-FL):
The U.S. House of Representatives passed an amendment to the FY 2017 Defense Appropriations Act sponsored by Representatives Tom Rooney (FL-17), John B. Larson (CT-01) and Chris Smith (NJ-04) that will provide increased assistance to military families who have a child with Autism Spectrum Disorder (ASD).

“Having a child with Autism Spectrum Disorder (ASD) shouldn’t make it harder for you to serve in the military,” Rooney said. “This amendment is a commonsense adjustment in policy that never should have been changed in the first place. We need to ensure that our service members and veterans have the tools to raise their families and give back to them a small fraction of what they have sacrificed for this country.”

In December 2015, the Defense Health Agency (DHA) announced cuts to reimbursement rates for applied behavior analysis (ABA) services – a widely recognized treatment program for children with ASD that is already covered by a majority of private insurers in most regions of the country. Since becoming effective in April, these cuts have resulted in many areas with military facilities facing shortages of ABA therapy providers.

Further, the enactment of these cuts came in the middle of the DHA’s Comprehensive Autism Care Demonstration; a demonstration program on ABA services set to run through December 2018. Consequently, these ill-timed cuts would skew the strong analytical analysis of ABA services the Demonstration was expected to yield.
The bipartisan Rooney-Larson-Smith Amendment would restore ABA reimbursement rates, a provision already authorized by a similar amendment offered by the group to the FY 2017 NDAA (H.R. 4909), which was adopted by voice vote on the House floor. Once the cuts have been rolled back, rates will not be allowed to increase or decrease until the conclusion of the Autism Care Demonstration in 2018.
From Rep. Larson :
“With everything our servicemembers and their families give to our country, we should not hesitate to provide the care they need in return,” said Larson. “Every military family makes sacrifices, but they should never be asked to sacrifice the health and wellbeing of their children. I was extremely proud to work with Reps. Rooney and Smith on this effort. They have been great champions for our military families.”

Larson has won several bipartisan victories to make ABA a permanent benefit in TRICARE. Last month, Larson’s amendment passed as part of the National Defense Authorization Act (NDAA). Today’s victory ensures the measure is funded so military families receive the help they need.

Wednesday, June 15, 2016

Bad Behavior and a Brewer

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- including casual prejudice against disabled people.
Blair Anthony Robertson reports at the Sacramento Bee on "Special Ed's Brewery" in Galt, CA, whose owners have apologized for the name.
“My husband is getting death threats on his phone,” co-owner Cheryl Mason said. “The situation is not funny at all.”
Mason said she and her husband, Edward, have reported the threats to police. The name and related themes tied to the business – including the slogan “Take the short bus to special beer” and “’tard tested, ’tard approved” – touched off a firestorm of complaints, vitriol and calls for a boycott on Facebook and Twitter. The business also promoted a proposed beer, Back of the Bus Brown Ale, that appears to refer to Jim Crow-era segregation.
Tricia Bowden, a Galt resident who had called for a boycott of the business, said she was still hoping to meet with Edward Mason before moving forward. He had agreed to meet with her at 11 a.m. Tuesday but called it off, she said. Bowden’s 22-year-old daughter, Kristina, has autism.
“I’m really embarrassed. I raised my children in Galt. The special education community here is fabulous. My daughter had a wonderful high school experience. This doesn’t represent us, and hopefully it doesn’t represent Ed,” Bowden said.
When told of the death threats, Bowden added, “That’s very unfortunate and sad that people would stoop to that – adding hate to ignorance.”

Tuesday, June 14, 2016

Trump, Clinton, Disability, Public Health

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.

PolitiFact examines the ad showing Trump mocking a disabled journalist.
Trump tweeted about the ad on Sunday: "Clinton made a false ad about me where I was imitating a reporter GROVELING after he changed his story. I would NEVER mock disabled. Shame!" The Trump campaign did not respond to PolitiFact’s request for comment.
In an ad from Priorities USA Action, parents of a disabled child said Trump "mocked" a disabled reporter at a campaign rally. Trump did mimic the man’s oddly angled right hand while flailing his arms and shouting in a strange voice. Disabled people and advocates said the candidate clearly was mocking him.

Trump’s excuses for his comments are at odds with the evidence. Trump said he didn’t remember the man so he couldn’t know he was handicapped. But Kovaleski said he and Trump knew each other well because the reporter regularly covered the New York businessman for years. Archived reports support that.

Trump also talked about the reporter with familiarity as a "nice reporter" and a "poor guy" who "you gotta see."

Trump’s denials that he did not mock -- or even know -- the disabled reporter don’t add up. We rate the ad’s claim True.
David Nather reports at Stat:
Clinton “really knows what’s going on and is a policy wonk on medical research as well as health care,” said Mary Woolley, president of Research!America, a coalition of groups that promote medical research. Trump, however, has such an “in the moment” approach to medical research — almost never raising the issue unless someone asks him about it — that it will be impossible to know what he’d do until people ask him more questions, she said.
Paul Offit, the chief of the division of infectious diseases at Children’s Hospital of Philadelphia, puts the choice in more stark terms.
“I think it is fair to say that Donald Trump is a black box. He says one thing one day and the opposite the next,” Offit said. “So he certainly scares me far more than Hillary Clinton, who has generally supported public health.”
[Clinton] has laid out plans to boost Alzheimer’s research, increase treatment and support for people with autism, advance the fight against HIV and AIDS, andreduce opioid addiction and substance abuse.
Trump has also bought into theories that aren’t grounded in medical science. He has talked and tweeted, many times, about the now-disproven link between vaccines and autism. “If I were President I would push for proper vaccinations but would not allow one time massive shots that a small child cannot take — AUTISM,” he tweeted in March 2014.
And, of course, there was Trump’s vitamin network, a network marketing company that sold supplements on the basis of bad science.

Monday, June 13, 2016

The Harm of the Vaccine-Autism Myth

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

By not vaccinating their children, parents aren't only turning their backs on scientific evidence disproving a vaccine-autism link, nor are they only choosing to endanger their children. Instead, they're also sending the message that they would rather risk having their child become ill or die from nearly-eradicated diseases than risk having their child become autistic — all based on one fraudulent study. Is autism really a fate worse than illnesses that can cause encephalitis, seizures, meningitis, deafness, miscarriage, and death? Because by not vaccinating their children, parents are saying that autism-spectrum disorder is worse than risking their children's lives.

Sunday, June 12, 2016

Comparing Autism and Diabetes

An editorial in The San Antonio Express-News
The analogy to autism treatment is diabetes.
Just imagine a child is diagnosed with diabetes. Imagine she has to wait two years for lifesaving and life-changing insulin. It would be an infuriating and ludicrous proposition for parents.
That analogy comes from Dr. Melissa D. Svoboda, director of the autism program at The Children’s Hospital of San Antonio.
Her point is this: While not a cure, there is an effective, but expensive, treatment for autism known as Applied Behavioral Analysis, or ABA. It is the “gold standard” and can make all the difference in a person’s life if provided early enough.

But Medicaid in Texas doesn’t cover ABA, private insurance reimbursements are often lacking, and there is a dramatic shortage of experts in the field to make diagnoses.
These are the major roadblocks to the early diagnosis and treatment of autism highlighted in a recent report from the Kronkosky Charitable Foundation.
The analogy to diabetes could spark some discussion in the autism community.  Many object to the "disease frame."

Protecting People with Disabilities

In The Politics of Autism, I write:
People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.
A release from Michigan House Democrats:
As co-chairmen of the legislative Disabilities Awareness Caucus, state Rep. Frank Liberati and state Sen. Rick Jones have introduced bipartisan legislation that would increase penalties for assaulting an individual with a developmental disability.

“As a board member and longtime volunteer of the Michigan Special Olympics, I find it horrific that someone would knowingly assault a person with special needs,” said Jones (R-Grand Ledge). “People with disabilities can often have difficulty caring for themselves and protecting themselves. We must crack down hard on the kind of criminal who would assault a person with a disability.”

House Bills 5728 and 5729 and Senate Bills 1017 and 1018 aim to prevent harm to individuals with disabilities by creating a harsher punishment for those who know of a person’s disability and are guilty of assault or assault and battery on that person.

Under the bills, a first offense for someone convicted of assaulting an individual with a developmental disability and knowing that individual has a disability would be guilty of a misdemeanor and face up to one year in jail, a fine of up to $1,000, or both. Subsequent offenses would result in felony charges punishable by up to five years in prison, a fine of up to $5,000, or both.

“Not only does this legislation increase penalties for assault of a person with a disability, it gets to the bigger issue of needing to create a culture of respect and dignity,” said Liberati (D-Allen Park). “It is time to show this community has a voice and through this legislation they will be heard.”

The Disabilities Awareness Caucus is a bipartisan, bicameral effort that focuses its attention on policy issues facing those with a disability.

Saturday, June 11, 2016

FTC Cracks Down on "Brain Training"

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval.
A May 18 release from the Federal Trade Commission: (h/t Disability Scoop)
The developers and marketers of the LearningRx “brain training” programs have agreed to stop making a range of false and unsubstantiated claims and pay $200,000 under a settlement with the Federal Trade Commission.
According to the FTC’s complaint, LearningRx Franchise Corp. and its CEO, Dr. Ken Gibson, deceptively claimed that their programs were clinically proven to permanently improve serious health conditions like ADHD, autism, dementia, Alzheimer’s disease, strokes, and concussions and that the training substantially improved school grades and college admission test scores, career earnings, and job and athletic performance. They also allegedly claimed that LearningRx brain training is 10 times more cost-effective than tutoring.
“Companies that say they can significantly improve serious health conditions or how your brain functions in everyday situations need to back up those claims with sound science,” said Jessica Rich, Director of the FTC’s Bureau of Consumer Protection. “In this case, the defendants couldn’t show their training provides the health or other real-world benefits they claimed.”
According to the FTC, the defendants promoted LearningRx through and affiliated websites, as well as through a blog, Facebook and Twitter posts, print and radio ads, and direct mail pieces. They also allegedly used Google search ads to target consumers searching for terms such as “cure for ADD,” “autism cure,” “Asperger cure,” and “severe traumatic brain injury cure.” The defendants, based in Colorado Springs, Colorado, offered LearningRx training through more than 80 LearningRx centers that it franchised in 25 states.
The proposed order settling the FTC’s charges prohibits the defendants from claiming that their programs improve performance at work or in athletics, or improve the cognitive function of individuals with age-related or other health conditions, unless the claims are not misleading and substantiated by human clinical testing.
The order further prohibits the defendants from making unsubstantiated claims about the performance, benefits, or efficacy of their programs, including claims about improvement in school grades or scores on standardized academic tests, performance on everyday tasks, increased income, or superiority to academic tutoring. Finally, the order prohibits the defendants from misrepresenting the existence or results of any tests or studies, and from providing others with the means to make the prohibited claims. The order imposes a $4,000,000 judgment against the company, which will be suspended upon the payment of $200,000 as disgorgement of ill-gotten gains.
The Commission vote authorizing the staff to file the complaint and proposed stipulated final judgment and order was 3-0. The complaint and order were filed in the U.S. District Court for the District of Colorado.
NOTE: The Commission files a complaint when it has “reason to believe” that the law has been or is being violated and it appears to the Commission that a proceeding is in the public interest. Stipulated final orders have the force of law when approved and signed by the District Court judge.
The FTC is a member of the National Prevention Council, which provides coordination and leadership at the federal level regarding prevention, wellness, and health promotion practices. This case advances the National Prevention Council’s goal of increasing the number of Americans who are healthy at every stage of life. These cases are part of the FTC’s ongoing effects to protect consumers from misleading health advertising.
The Federal Trade Commission works to promote competition, and protect and educate consumers. You can learn more about consumer topics and file a consumer complaint online or by calling 1-877-FTC-HELP (382-4357). Like the FTC on Facebook(link is external), follow us on Twitter(link is external), read our blogs and subscribe to press releases for the latest FTC news and resources.

Friday, June 10, 2016

Autism Employers

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

Alexia Elejalde-Ruiz reports at The Chicago Tribune:
Ford this month kicked off a pilot program funded by the Autism Alliance of Michigan to give individuals with autism on-the-job training in product development, with the chance to be considered for a job.

Deerfield-based Walgreens, which became a leader on the issue thanks to a senior vice president with an autistic son, counts about 12 percent of its distribution center employees as having a self-disclosed disability, many on the autism spectrum.

Microsoft last year launched a small pilot program to hire at least 10 people with autism for full-time positions such as software engineer and data analyst. German software company SAP has made it a goal to have 1 percent of its workforce composed of people on the autism spectrum.

Northwestern University recently hired its first employee from Project SEARCH, a program that puts young adults with autism through three 10-week internships at the university. The employee will be performing clerical and support roles in its office of alumni relations and development.

Other organizations make autism central to their business model.

AutonomyWorks in Downers Grove employs 20 associates, all of whom have autism, to perform back-office digital advertising tasks for corporate clients, said David Friedman, founder and CEO.

Distrusting Science

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

In his CalTech commencement address today, surgeon Atul Gawande speaks of mistrust of science. The New Yorker carries the text:
People are prone to resist scientific claims when they clash with intuitive beliefs. They don’t see measles or mumps around anymore. They do see children with autism. And they see a mom who says, “My child was perfectly fine until he got a vaccine and became autistic.”
Now, you can tell them that correlation is not causation. You can say that children get a vaccine every two to three months for the first couple years of their life, so the onset of any illness is bound to follow vaccination for many kids. You can say that the science shows no connection. But once an idea has got embedded and become widespread, it becomes very difficult to dig it out of people’s brains—especially when they do not trust scientific authorities. And we are experiencing a significant decline in trust in scientific authorities.

The sociologist Gordon Gauchat studied U.S. survey data from 1974 to 2010 and found some deeply alarming trends. Despite increasing education levels, the public’s trust in the scientific community has been decreasing. This is particularly true among conservatives, even educated conservatives. In 1974, conservatives with college degrees had the highest level of trust in science and the scientific community. Today, they have the lowest.

Thursday, June 9, 2016

Reactions to the Anti-Trump Ad

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.  More reactions:

Greg Sargent at The Washington Post:
The ad is running in seven swing states — Ohio, Virginia, Florida, Colorado, Nevada, New Hampshire, and Iowa — and it’s backed by a $4 million buy for its first week, as part of a broader $20 million buy between now and the conventions.
Note that this ad doesn’t merely show footage of Trump mocking the reporter. It shows a family with a disabled daughter discussing how hurt and shocked they were to see him abusing someone with a similar disability.
The spot is another sign that Democrats think they can render Trump unacceptably toxic before a general election audience by relentlessly spotlighting his profound cruelty — as displayed by Trump himself. This strain runs through much of the evolving Democratic critique of Trump and, more broadly, of Trumpism. In one early tell, the Clinton campaign released a web video recapping footage of Trump calling for mass deportations and a ban on Muslims, and linking those to his vow to revive torture and take out terrorists’ families. More recently, Elizabeth Warren’s big speech pillorying Trump focused hard on his suggestion that he relished making a profit off a housing crash, but crucially, she argued that his own quotes revealed his cruel, cavalier attitude towards the millions of people who would be badly hurt by it.
Sarah McCammon at NPR:
Whether or not these ads persuade voters to cast ballots for the Democratic nominee, they can have another effect. Some political science research suggests that well-timed and well-crafted negative ads may be effective in reducing turnout among would-be supporters of the candidate who is attacked.
"Everything we do is designed to do both. Obviously it's a negative ad, so this is more about defining Trump than turnout amongst Democrats," Priorities spokesman [Justin] Barasky said. "You can't do one without the other."
He said they are "under no illusion that Republicans are going to cross over and vote for Hillary Clinton" in large numbers. But the superPAC believes that some Republican voters, as well as a substantial number of independents, are "troubled by the things that Donald Trump has said and done throughout the course of his campaign and his career" and could be persuaded, at minimum, to abstain from casting a ballot for him. 
Eric Levitz at New York:
The fact that Priorities USA has decided to focus its early anti-Trump messaging on his misogyny and apparent mockery of the disabled signals the Democrats' desire to play for a landslide: For the party's base, Trump's racist statements and discriminatory policies are likely more salient than his imitation of Kovaleski's arm. But white suburban women who lean Republican may find his sexism and cruelty toward the physically infirm more discomfiting. Or so Trump's Republican rivals seem to have thought.
Steve Benen at MSNBC:
Democrats no doubt understand that they need to avoid a garbled, overly complicated message. They don’t necessarily need a bite-sized label like “Little Marco” or “Lying Ted,” but if Dems try to pitch voters on the idea that Trump is an unprepared, dishonest, racist ignoramus with ugly controversies in his personal and professional life, who’ll endanger the country with misguided ideas about the economy and foreign policy, it might not resonate. Effective messaging needs to be more focused.
And so the Priorities USA ad suggests Democrats will go in a more straightforward direction, effectively making the case that Trump is a bad person who says and does monstrous things.

Wednesday, June 8, 2016

Vouchers and Choice

The Council for Parent Attorneys and Advocates has a report titled  School Vouchers and Students with Disabilities: Impact in the Name of Choice.  Key findings:
  • Parents often choose a voucher regardless of the availability of civil rights protections due to the urgency of their child needing to change schools. 
  • Parents like knowing they can explore their options when vouchers are available, even if they end up keeping their child in the neighborhood public school. 
  • Little data exists with regard to families choosing vouchers that limit or terminate IDEA rights once those families leave the traditional public school. 
  • Voucher funding is rarely sufficient and generally does not cover the full cost of the child’s education, meaning that only parents with adequate finances have a choice. 
  • Some schools accept children with a disability (and the voucher funds) and then expel them for behavior or other reasons forcing the children back into a poor or inappropriate school situation. 
  • Special‐education specific voucher programs typically fail to include all students with disabilities and it is rare for programs to accept students who are twice exceptional.
  • Too little data exists to compare the academic outcomes of students with disabilities [and other students] participating in voucher programs to public school students.
From the report:
Some states that offer special education vouchers distinguish the voucher amounts depending on the disability of the student. Ohio’s Jon Peterson Special Needs Scholarship Program provides students with disabilities with a range of maximum scholarships based on the student’s disability.Ohio also has an Autism Scholarship Program, providing public funding for students with autism to attend their non‐district school. All students with disabilities are otherwise eligible for the Jon Peterson Scholarship, with the amount depending on their disability category.Voucher amounts are determined through a complex funding formula that considers the average cost to educate a “typical student in a typical classroom” plus the estimated additional costs of providing special education and related services based on the child’s disability. This past year, Louisiana implemented a “School Choice Program for Certain Students with Exceptionalities.”This program provides vouchers for students with the following disabilities: autism, developmental delay, mental disability, other health impairment, specific learning disability, traumatic brain injury

“Actually, some districts won’t identify students as having autism or as being IDEA eligible so that parents can’t access {the scholarship} since much of the money comes out of the district’s budget.”

Tuesday, June 7, 2016

Civil Rights Data

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

A release from the US Department of Education:
The U.S. Department of Education's Office for Civil Rights (OCR) today unveiled new data from the 2013-2014 school year showing gaps that still remain too wide in key areas affecting educational equity and opportunity for students, including incidents of discipline, restraint and seclusion, access to courses and programs that lead to college and career readiness, teacher equity, rates of retention, and access to early learning.
U.S. Secretary of Education John B. King Jr. said that, despite significant work from districts across the country, the persistent disparities shown in the new Civil Rights Data Collection—which collected data from all public schools and school districts nationwide for the 2013-14 school year—highlight the need for a continued focus on educational equity, especially in the implementation of the new Every Student Succeeds Act.
Students with disabilities are more than twice as likely as students without disabilities to be suspended in K-12 settings. They also represent two-thirds of students who are secluded from their classmates or restrained to prevent them from moving—even though they are only 12 percent of the overall student population.
Other findings from the report:

  •  Students with disabilities served by IDEA are 12% of students in schools that offer Algebra II and 6% of students enrolled in Algebra II; they are 11% of students in schools that offer calculus and 1% of students enrolled in calculus; and they are 11% of students in schools that offer physics and 6% of students enrolled in physics
    • To close the participation gap in physics, more than 104,000 additional students with disabilities served by IDEA would need to participate in physics classes nationwide
  • Similarly, students with disabilities served by IDEA are 12% of all students in schools offering GATE programs, but represent fewer than 3% of GATE students nationwide.
  • Students with disabilities served by IDEA and English learners are 12% and 5% of high school student enrollment , but 21% and 11% of high school students held back or retained.
  • High school students with disabilities served by IDEA are 1.3 times as likely to be chronically absent as high school students without disabilities.
  • Elementary school students with disabilities served by IDEA are 1.5 times as likely to be chronically absent as elementary school students without disabilities. 

Monday, June 6, 2016

Ad Takes on Trump Over Disability

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.