After the Texas Special-Ed Scandal

In The Politics of Autism, I discuss special education.  Some states do a reasonably good job, but Texas has not  been one of them.

Alejandra Matos reports at The Houston Chronicle:

Texas enrolled its largest number of students in special education programs last school year, the same year the state's education department officially got rid of an arbitrary cap it put in place more than a decade ago.

In the 2016-17 school year, 477,281 students received special education services, an increase of about 14,000 students compared to the previous school year. That's about 8.9 percent of Texas students receiving special education resources, according to the latest data from the state's Public Education Information Management System.

The increase in enrollment, while only a fraction of a percent, is noteworthy given a policy the Texas Education Agency quietly enacted in 2004 that directed school districts to limit special education services to no more than 8.5 percent of students.

A 2016 Houston Chronicle investigation found that tens of thousands of students with disabilities were denied access to services because of the de-facto cap. TEA eliminated the policy in November, two months after the Chronicle revealed the existence of what officials described as the 8.5 percent "benchmark."

Kevin and Avonte's Law, 2017

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

The House passed an amended version of Kevin and Avonte's Law, but the Senate did not act on this version before adjourning last year.  

A release from Senator Chuck Grassley:

Senate Judiciary Committee Chairman Chuck Grassley and Senator Amy Klobuchar (D-Minn.) have introduced legislation to help families locate missing loved ones with Alzheimer’s disease, autism and related conditions. Kevin and Avonte’s Law (S. 2070), named in honor of two boys with autism who perished after wandering from safety, would also support training for caregivers to prevent and respond to instances of wandering.

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The bill, which passed the Senate by voice vote in the 114th Congress, is named in honor of two young boys diagnosed with autism who wandered away from supervised settings and drowned. One of the two, nine year-old Kevin Curtis Wills, died in 2008 after jumping into the Raccoon River near his home town of Jefferson, Iowa. The other, high school student Avonte Oquendo of Queens, New York, drowned in NYC’s East River in 2014. Six year-old Hamza Elmi of St. Cloud, Minnesota, who was also diagnosed with autism, drowned in the Mississippi River near his home in 2015.

The bill would reauthorize the expired Missing Alzheimer’s Disease Patient Alert Program, and broaden it to support people with autism and other developmental disabilities. Specifically, the bill would allow Justice Department grants to be used for state and local education and training programs to help prevent wandering and reunite caregivers with missing family members who have a condition linked to wandering.

Under the bill, the grants can be used for the development of training and emergency protocols for school personnel, to supply first responders with additional information and resources, and for locative tracking technology programs to assist the families and caregivers of individuals who may wander from safety because of their condition. Grant funding may also be used to establish or enhance notification and communications systems for the recovery of missing children with autism.

Senators Chuck Schumer (D-N.Y.), Thom Tillis (R-N.C.) and Dick Durbin (D-Ill.) are also cosponsoring this legislation. Senator Richard Burr (R-N.C.) will also cosponsor the bill.

The bill is supported by, among others, the Autism Society of Iowa, Autism Speaks, the National Autism Association, SafeMinds, the National Center for Missing and Exploited Children, ANCOR (American Network of Community Options), National Autism Society of America, the Alzheimer’s Impact Movement, the National Down Syndrome Society, and the Color of Autism Foundation.

More information on Kevin and Avonte’s Law is available HERE. Bill text can be found HERE.

Loophole in CA Vaccine Mandate

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

California has not punished any doctors for writing needless exemptions from the vaccination requirement, writes Soumya Karlamangla at The Los Angeles Times

Public health advocates are still concerned that doctors are writing improper exemptions to get kids out of vaccines. The number of children with medical exemptions tripled last year, and dozens of complaints against physicians have been filed with the Medical Board of California.

But the way California law addresses medical exemptions has created a challenge for officials, experts say. It leaves the decision of whether a child should be allowed to skip vaccines fully up to the doctor.

Some websites aimed at parents worried about vaccines suggest that physicians could write exemptions for children if they have a family history of asthma, diabetes, eczema or ADHD.

“Is it an abuse? Of course it’s an abuse,” said UC Hastings law professor Dorit Reiss. “The law left discretion to the doctors and of course that means doctors can abuse that discretion.”

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In West Virginia, one of the other two states that banned personal belief exemptions, state officials have to sign off on every medical exemption form. The proportion of children in West Virginia with medical exemptions is four times smaller than in California.

Autistic Superhero

In The Politics of Autism, I discuss depictions of ASD in popular culture.  Last week, we noted an autistic character in a video game.

Ivan Rodriguez reports at KGUN-TV in Tucson:

More here:


 

Report on Employment

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

A release from the Kessler Foundation:

The major economic indicators continue to reflect increasing inclusion of Americans with disabilities in the workforce, according to today’s National Trends in Disability Employment – Monthly Update (nTIDE), issued by Kessler Foundation and the University of New Hampshire’s Institute on Disability (UNH-IOD). Results from a new national survey show that many employers have implemented practices and processes for recruiting, hiring, training, and retaining people with disabilities. The 2017 Kessler Foundation National Employment and Disability Survey: Supervisor Perspectives underscores where success is being achieved and reveals opportunities for maximizing inclusion in the workplace.

In the Bureau of Labor Statistics (BLS) Jobs Report released Friday, November 3 , the employment-to-population ratio for working-age people with disabilities increased from 27.9 percent in October 2016 to 30.5 percent in October 2017 (up 9.3 percent; 2.6 percentage points). For working-age people without disabilities, the employment-to-population ratio also increased from 73.1 percent in October 2016 to 73.7 percent in October 2017 (up 0.8 percent; 0.6 percentage points). The employment-to-population ratio, a key indicator, reflects the percentage of people who are working relative to the total population (the number of people working divided by the number of people in the total population multiplied by 100).
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The labor force participation rate for working-age people with disabilities increased from 31.3 percent in October 2016 to 33.3 percent in October 2017 (up 6.4 percent; 2 percentage points). For working-age people without disabilities, the labor force participation rate also increased from 76.5 percent in October 2016 to 76.6 percent in October 2017 (up 0.1 percent; 0.1 percentage points). The labor force participation rate is the percentage of the population that is working or actively looking for work.

The report does not include separate data on employment of autistic people.

Earlier this year,  A BLS release led with a lower employment figure, but it included senior citizens.

Thor and Exceptional Minds

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

A release from Exceptional Minds:

The special bond between autism and comic book heroes was once again evident at Wednesday’s cast and crew screening of Marvel’s latest movie "Thor: Ragnarok," which was attended by eight visual effects artists from Exceptional Minds Studio.

The artists – all young adults on the autism spectrum – are both Marvel fans and working professionals who provide visual cleanup for feature films. Exceptional Minds artists have done visual effects for Marvel movies "Spider-Man: Homecoming," "Guardians of the Galaxy Vol. 2," "Doctor Strange," "X-Men: Apocalypse," "Captain America: Civil War," "Ant-Man," and "Avengers: Age of Ultron."

"Thor: Ragnarok" is the eighth Marvel movie for the artists at Exceptional Minds Studio, the only visual effects and animation studio staffed entirely by professionals on the autism spectrum.

During Wednesday’s screening at the Academy of Motion Picture Arts and Sciences, Los Angeles, Marvel Studios Executive Vice President of Physical Production Victoria Alonso applauded the work done by Exceptional Minds and encouraged others to learn from the studio’s example. “What a wealth of untapped potential exists in this extraordinary group of young adults,” she said.

Since opening its doors almost four years ago, the small studio has done tracker marker removal, split screen, green screen keying, and rotoscoping for compositing as well as end title credit work and animation for more than 50 major motion pictures and/or television series.

"Thor: Ragnarok" opens in theaters today, November 3, as the third film in the Thor franchise featuring the god of thunder, and promises to be Marvel’s highest scoring movie yet.

Tax Plan Would Hurt Disability Families

The Politics of Autism includes a discussion of tax issues including the ABLE Act.

Many families of people with disabilities face daunting medical bills.  Some use the medical expense deduction.  The Trump-supported tax cut bill would take it away.

Lydia Ramsey reports at Business Insider:

The Republican tax plan repeals an itemized deduction that applies to healthcare expenses. That's key for families with high medical costs, like those dealing with chronic conditions that require medical devices and other expensive equipment. Right now, those expenses can be deducted from their taxes, but under the Republican tax plan, they wouldn't be able to.

Under current law, individuals who spend over 10% of their income on medical expenses are allowed to deduct part of those costs from their taxes. The proposed new bill would remove that deduction. According to the Internal Revenue Service, for 2016 taxes, individuals were able to deduct in an itemized way "only the amount of your unreimbursed allowable medical and dental expenses that is more than 10 percent of your adjusted gross income."

The IRS broadly defines medical expenses as the "costs of diagnosis, cure, mitigation, treatment, or prevention of disease, and the costs for treatments affecting any part or function of the body," including insurance premiums, devices, and long-term care.

Disability Advocates Distrust DeVos

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. Recently, DeVos has taken some regulatory activities that concern advocates for special education.

The latest furor is of the department's own making, said Curtis Decker, the executive director of the National Disability Rights Network. He said his organization has a longstanding relationship with many of the people in the Education Department whose positions touch the lives of students with disabilities.

"They didn't have enough sense to call us and say, 'We're about to do this thing, don't worry, [the guidance] is pretty old, don't freak out,'" Decker said.

And, he said, the Trump administration has stirred up concerns among advocates that protections for people with disabilities are fair game for cuts or elimination that go well beyond special education. Proposed changes to Medicaid or to housing vouchers also affect people with disabilities, he said.

Funding concerns are also a factor. The approximately $13 billion for special education in the current federal budget is one of the biggest pots of money distributed by the Education Department.

There's no proposal on the table to cut special education funding. But, Decker noted, "If they're looking for savings, we're a fat little bird sitting there waiting to be cooked. We're all incredibly on edge."

Proposed Rule Could Hurt Mean Less Treatment for Autistic People

The Politics of Autism includes an extensive discussion of insurance issues, including the impact of the Affordable Care Act.

 Paige Winfield Cunningham at The Washington Post:

Let’s just say that if we were waiting for the other shoe to drop, it may just have done so. A humongous, 365-page rule proposed late last week by the Centers for Medicare and Medicaid Services is the agency’s biggest attempt to put a conservative stamp on the Affordable Care Act by rewriting its rules in a way that gives insurers and states as much leeway as possible from the law’s mandates.

The proposed rule, which suggests an array of changes to how the individual and small-business marketplaces are run, most notably gives states wide latitude in carrying out the ACA’s “essential health benefits” — 10 categories of care that individual market insurers must cover to ensure consumers can access a full range of benefits.
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Here’s how EHBs work: States must select a “benchmark” plan to set the standard for how generously insurers must cover essential benefits, which include categories such as maternity care and mental-health services. The benchmark plan is typically chosen from among employer-sponsored plans in order to ensure individual plans are comparably generous.

Marketplace insurers must provide the same value of services within each of the 10 categories as the benchmark plan. So if the benchmark plans covers treatment for autism or speech-language therapy, for example, insurers must cover that too, or substitute a service with equivalent value. You get the idea.

If CMS goes ahead with its proposed changes, states won’t have to choose from a limited, fixed menu of benchmark plans. Instead, they can select a la carte. For example, Ohio could choose the maternity care standards from one benchmark plan and the mental-health services from another. Wisconsin could choose the benchmark plan from North Dakota or New Jersey or Virginia.

Nicholas Bagley has more at The Incidental Economist. 

Milestone Tracker App

In The Politics of Autism, I discuss evaluation and diagnosis of young children.

A release from the Centers for Disease Control and Prevention:

Is your child’s development on track for his or her age? Now you can find out with CDC’s new free Milestone Tracker app. The app makes it easy for parents to track, support, and celebrate their young child’s development.

“Skills like taking a first step, saying those first words, and waving ‘bye-bye’ are developmental milestones all parents anticipate and celebrate,” said CDC Director Brenda Fitzgerald, M.D. “This CDC Milestone Tracker app gives parents tips to help their child learn and grow, a way to track developmental milestones, recognize delays, and the ability to share this information with their healthcare provider.”
The new app offers

• Milestone checklists for children ages 2 months through 5 years, illustrated with photos and videos.
• Tips and activities to help children learn and grow.
• Information on when to act early and talk with a doctor about a developmental concern.
• A personalized milestone summary that can be easily shared with the doctor and other care providers.
• Reminders for appointments and developmental screening.

The Milestone Tracker app, available in iOS and Android, was developed by CDC’s “Learn the Signs. Act Early.” program to help parents, early care and education providers, and healthcare providers track developmental milestones in young children.

Through this app and its many other parent-friendly tools, the program aims to improve the early identification of children with developmental delays and disabilities, including autism, so children and families can get the support and services they need as early as possible.

In addition to the app, CDC offers free children’s books, milestone checklists, and other resources that can be downloaded or ordered online. Most materials are available in English and Spanish, and some are available in other languages. For more information on the Milestones Tracker app, visit www.cdc.gov/MilestoneTracker. For more on CDC’s “Learn the Signs. Act Early.” program and other free tools for parents, visit www.cdc.gov/ActEarly.

Overwatch, Symmetra, and Autism

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

Yesterday, I was not able to attend the Autism Law Summit because of a longstanding promise to take my son to Stan Lee's L.A. Comic Con.  We attended a panel on Overwatch, and one of the voice performers mentioned that her character is autistic.   Earlier this year, an autistic fan wrote to director Jeff Kaplan. Andrew McMillen writes at Wired:

Dear Mr. Kaplan,” Samuel began, “My main question is about Symmetra. She’s my favorite character, hands down. I just wanted to clarify: Is Symmetra autistic? As an autistic person myself, I’d love to know.”

He addressed the letter to Blizzard Entertainment’s offices in Irvine, California, expecting not to hear back. A month later, a letter arrived.

“Dear Samuel,” wrote Kaplan, “I’m glad you asked about Symmetra. Symmetra is autistic. She is one of our most beloved heroes and we think she does a great job of representing just how awesome someone with autism can be.”

Word quickly spread on the Internet, but hints were already around.

In May 2016, just before the game’s release, Blizzard hinted at Symmetra’s autism when it published an online comic named A Better World. In the 10-page strip, Symmetra was shown to be uncomfortable in crowds, and went out of her way to adjust a crooked picture frame during an important business meeting. Symmetra’s inner monologue referenced her being “different,” and hinted that others had asked her “where [she] fit on the spectrum.”

Symmetra‘s voice actor learned about this element of her character at the same time as those who read the comic. “I loved that it was so lightly touched-on,” says Anjali Bhimani, an Indian-American actor who is best known for on-screen roles in Modern Family, Silicon Valley, and Criminal Minds. “It is not the defining characteristic, or even a defining characteristic of the many that she has...Had they told me that earlier on, I think somewhere in the back of my mind, I would have given that more weight than necessarily would have been appropriate.” By taking such a subtle approach to the character’s autism, Blizzard gracefully avoided Symmetra becoming yet another TV special-style example of spectrum disorder. Similarly, the list of autistic characters that have appeared in video games is short—just 10 characters since 2001, including Symmetra.

TV Report on Adult Autism

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 WNDU-TV in South Bend, IN, Maureen McFadden reports:

We’re spending a huge amount of money on how to make sure that people like us don’t exist,” explains Julia Bascom. 

Julia is the executive director at the Autistic Self Advocacy Network and thinks our work with autism is misguided. 

“Autistic life can be a good life. It’s a life worth living. But, we spend a shockingly disproportionate amount of money on cure and prevention, as opposed to on services and support,” she states.

DeVos Ponders Rollback of Minority Special Education Rule

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

Michael Stratford at Politico:

Education Secretary Betsy DeVos has been weighing whether to delay and possibly scrap an Obama-era rule aimed at ensuring minority students aren’t placed in special education classes more often than necessary, Caitlin Emma reports. An unpublished draft of a Federal Register notice obtained by POLITICO shows that the Education Department has considered seeking input on whether that rule should be delayed by two years — and whether it should eventually be modified, replaced, removed or left unchanged. An Education Department official said the draft is an early version of the notice and has been significantly revised, but did not challenge its veracity. Caitlin has the story.

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Democrats on Wednesday night pounced on the news that DeVos has considered delaying the rule. “Why is it that key civil rights protections for students always seem to be on the chopping block for @BetsyDeVosED?,” Sen. Tim Kaine (D-Va.) asked on Twitter. Sen. Bob Casey (D-Pa.) said in a tweet that it “seems Betsy DeVos is on a mission to decimate basic protections for students at all levels.”House Minority Leader Nancy Pelosi said: “Instead of continuing this Admin’s civil rights attacks, @BetsyDeVosED *should* be expanding opportunities for all. Clearly, she is failing.”

Amanda Terkel at HuffPost:

A HuffPost/YouGov poll conducted Oct. 9-10 found that, indeed, DeVos is Trump’s most unpopular Cabinet official, alongside Jeff Sessions, the much more visible attorney general. DeVos and Sessions both have a 42 percent unfavorability rating in that poll. When asked which Cabinet members are doing a “bad job,” 32 percent of respondents picked Sessions and 32 percent picked DeVos. Thirty-seven percent of respondents said DeVos is doing a worse job than her predecessors, with just 20 percent saying she’s doing better and 12 percent saying she’s doing about the same.

A recent Morning Consult/Politico poll had similar results: DeVos was Trump’s most unpopular Cabinet secretary, with a net favorability rating of -12 percent, followed by Sessions, who was at -4 percent.

And in June, New York Times columnist Gail Collins conducted a reader poll for worst Trump Cabinet member. DeVos won.

DeVos is now a household name for many Democrats ― so much so that she has essentially become a new boogeyman for 2018. Democratic candidates nationwide are mentioning her in their fundraising emails.