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Sunday, June 24, 2018

The Autism at Work Employer Roundtable

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.

Dinah Eng at Fortune:
Social interaction and communication skills can be a challenge for people with autism spectrum disorder, but companies looking to hire untapped talent for tech-related jobs are discovering that those with autism are unusually detail-oriented, highly analytical, and able to focus intensely on tasks, making them valuable employees. Last October, six companies—Ford Motor, DXC Technology, EY, Microsoft, JPMorgan Chase, and SAP—formed the Autism at Work Employer Roundtable to share best hiring and workplace practices and to help other companies see the return on investment in hiring autistic employees.

Saturday, June 23, 2018

CA Due Process: Students Prevail Less Than 20% of the Time

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. 
California OAH ( Office Of Administrative Hearing ) Special Education statistics https://www.californiaspecialedlaw.com/due-process-hearing-decision-statistics/ 
Percent of cases when student prevailed :

Year 2017 : 18 %
Year 2016 : 12 %
Year 2015 : 13 %
Year 2014 : 15 %
Year 2013 : 11 %
Year 2012 : 14 %
Year 2011 : 14 %
Year 2010 : 10 %
Year 2009 : 15 %

Friday, June 22, 2018

"Brain Balance"

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. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
Chris Benderev at NPR:
Although Brain Balance isn't the only purveyor of alternative approaches for developmental disorders in the U.S., the scale of the enterprise sets it apart. The company's approach is still relatively new and not widely known, meaning many experts in the field of childhood development have not vetted its effectiveness.
Brain Balance says its nonmedical and drug-free program helps children who struggle with ADHD, autism spectrum disorders and learning and processing disorders. The company says it addresses a child's challenges with a combination of physical exercises, nutritional guidance and academic training.
An NPR investigation of Brain Balance reveals a company whose promises have resonated with parents averse to medication. But Brain Balance also appears to have overstated the scientific evidence in its messaging to families, who can easily spend over $10,000 in six months, a common length of enrollment.
...
 Yet a dozen experts in autism spectrum disorder, ADHD, dyslexia and childhood psychiatry interviewed by NPR all identified flaws in Brain Balance's approach.
They said the company's idea of imbalanced hemispheres was too simplistic and built upon the popular, discredited myth of the logical left brain and the intuitive right brain.
"It doesn't make sense," says Mark Mahone, a pediatric neuropsychologist at the Kennedy Krieger Institute in Baltimore. "In virtually every activity that one does ... both hemispheres of the brain are very, very active. ... It's not as simple as just being a left- or a right-hemisphere problem. Nothing is that simple."
 As for the three-pronged Brain Balance regimen, experts NPR spoke with said there is no solid evidence suggesting gluten, dairy or sugar consumption affects ADHD, autism or dyslexia. And although physical exercise may have modest impacts on inattention and tutoring can help in school, these interventions can be found elsewhere for much less money. No expert suggested either as a front-line remedy for ADHD or autism.

Thursday, June 21, 2018

The Autism Services Market


Autism services has already been an attractive industry for investors, particularly those looking to make a positive social impact. For such investors, the industry provides a very favorable opportunity for financial gains with the added benefit of empowering a growing segment of the population in need of support.

In the past five years, the market has become increasingly consolidated. As private equity eyes the increase in demand along with a more favorable climate for funding and reimbursement, we can expect to see even more consolidation in the future. As investors build national platforms by acquiring providers, these new national platforms are competing for dominance, and making it more difficult for privately owned companies to compete.

A benefit of this new landscape is that competition can raise the bar of service for any market. However, in healthcare especially, consolidation often stymies competition. By buying up a significant share of the market, larger players are able to effectively increase their bargaining power with insurers and suppliers. This gives them an outsized advantage over their competitors. That kind of market dominance prevents real competition and thus fails to improve quality. This is also why research shows that consolidation in healthcare typically leads to higher prices.

Wednesday, June 20, 2018

Waiting in Kansas

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities

Celia Llopis-Jensen reports at The Kansas News Service:
[B]ehavior analysts in Kansas can’t keep up with demand. A big reason, they say, is the state’s privatized Medicaid program, KanCare. Reimbursements are too slow — and too low.
One well-established mental health center recently decided to add ABA therapy to its services, but for now, at least, won’t be accepting Medicaid for that program.
“The state of Kansas’ hourly reimbursement rate doesn’t even cover the time and costs,” said a spokeswoman for the Family Service and Guidance Center in Topeka. “The KanCare rate pays about 50 percent.”

Even the process of getting credentials from KanCare’s three contractors can take months for each therapist. In the meantime, applicants for those jobs sometimes disappear.
“We have about 75 employees in our agency at any one time,” said Katrina Ostmeyer, associate executive director at Integrated Behavioral Technologies. “Ideally, if we’re fully staffed, we should have about 120.”
IBT, which serves large parts of Kansas, currently serves about 60 children. It has about 150 on its waitlist for behavior analysis. Most are enrolled in KanCare, which insures children based on family income and level of need.
It can take a long time for slots to open up because therapy for a single child can take multiple years.

Tuesday, June 19, 2018

ADA and Disability Facts

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


Download FFF: Anniversary of Americans With Disabilities Act: July 26, 2018 [PDF - <1 .0="" a="" mb="">

On July 26, 1990, President George H.W. Bush signed into law the Americans with Disabilities Act, which prohibits discrimination against people with disabilities in employment, transportation, public accommodations, commercial facilities, telecommunications, and state and local government services.
This Facts for Features provides a demographic snapshot of the U.S. population with a disability and examines various services available to them. The statistics come from various Census Bureau censuses and surveys, covering different periods of time...
40.7 million or 12.8%
Total civilian noninstitutionalized population with a disability in the United States.
Source:
2016 American Community Survey
20.1%
The percentage of the civilian noninstitutionalized population in West Virginia in 2016 with a disability — among the highest rates in the nation. Utah, at 9.9 percent, had the lowest rate.
Source:
Source: 2016 American Community Survey

7.5 million
Total civilian noninstitutionalized population ages 18 to 64 employed with a disability.
Source:
2016 American Community Survey
$22,047
Median earnings in the past 12 months (in 2016 inflation adjusted dollars) of the civilian noninstitutionalized population age 16 and over with earnings and a disability.
Source:
2016 American Community Survey
More on Disability

More Stats

See a detailed profile on the population with a disability from the 2016 American Community Survey. Statistics include:###



Monday, June 18, 2018

"Fake News," Autism, and Europe

In The Politics of Autism, I discuss the need for more study of the issue in other countries.

Mickey Keenan and Karola Dillenburger have an article at Societies titled "How ‘Fake News’ Affects Autism Policy."  The abstract:
 Since autism was first recognised, prevalence has increased rapidly. The growing economic as well as social cost to families and society can only be mitigated by effective interventions and supports. It is, therefore, not surprising that there is much heated debate and most governments have developed public policies to address the management of autism. This paper describes how well-known ‘propaganda’ techniques, that have become prevalent in the helping professions have been used to influence autism policies by spreading ‘fake news’ about the scientific discipline of Applied Behaviour Analysis (ABA). Over the past 40–50 years, meaningful evidence has accrued showing that interventions based on ABA can help people with autism reach their potential. In view of this, nearly all of North America has laws to mandate that ABA-based interventions are available through their health care systems. In contrast, across Europe there are no such laws. In fact, the National Institute for Health and Care Excellence (NICE), the body guiding health and social policy in the UK, concluded that it could not find any evidence to support ABA, and therefore could not recommend it. This paper addresses the reasons for these diametrically opposed perspectives.

Friday, June 15, 2018

Higher Education: Student Perceptions


At The Journal of Autism and Developmental Disorders, Grace L. Francis Jodi Duke, Frederick J. Brigham, and Kelsie Demetro have an article titled: "Student Perceptions of College-Readiness, College Services and Supports, and Family Involvement in College: An Exploratory Study." The abstract:
Although increasing numbers of students with disabilities are attending college, they graduate at lower rates compared to students without disabilities. In order to understand how to effectively prepare students with disabilities and provide meaningful support to college students with disabilities, we investigated the experiences of students registered with the disability service office at a public university located in the eastern region of the U.S. to learn about (a) the degree to which they felt prepared to enter college, (b) the disability-related services they received in college, (c) their perspectives of services received, (d) suggestions for improving services, and (e) their perspectives family involvement in college. We report mixed-methods findings from participants and provide implications for policy and practice.
From the article:
Students registered with the DSO at a public university in the eastern region of the U.S. were surveyed about their preparation for college, their experiences and perspectives of services received, and perceptions of family involvement in college. Participants’ sense of preparedness for college ranged from feeling very prepared (25%) to very unprepared (10%). They cited specific transition skills such as timemanagement, note taking, and writing as having positive impact on their academic preparedness for college. However, participants noted that they would have benefited from more explicit instruction in executive functioning, as well as study and literacy skills prior to college. Participants also reported that they would have benefited from specific instruction on the logistics of college life prior to high school graduation, including how to select and register for courses, communicate appropriately with professors, budget money, and navigate the college environment. These needs support previous findings by Cai and Richdale (2016), suggesting that Individualized Education Program (IEP) teams should support high school students in identifying their personal strengths, needs, as well as available resources to access in college.
Cai, R. Y., & Richdale, A. L. (2016). Educational experiences and needs of higher education students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(31), 31–41.CrossRefPubMedGoogle Scholar

Thursday, June 14, 2018

ABLE Age Adjustment Act

The Politics of Autism includes a discussion of the ABLE Act.

On May 22, over 25 organizations came together to strategize how to pass the ABLE Age Adjustment Act in the 115th Congress. The bill (H.R. 1874 /S.817) extends the upper age limit for eligibility for ABLE accounts from 26 to 46 years old. This would allow for a much larger pool of people to increase their assets while protecting eligibility for federal income supports and health care. Recently, the National Association of State Treasurers (NAST) released data showing that in order for ABLE to continue, the number of funded ABLE accounts needs to increase from 17,000 to 390,000 by the year 2021. We understand how important ABLE is to many people around the country, and how urgent and crucial it would be if the age limit was extended. The Autism Society will work with this coalition to help pass this bill in this Congress and urges advocates to encourage their Members of Congress to support the bill.

Wednesday, June 13, 2018

617,000

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

The ranks of students receiving services for autism continue to grow.

Children 3 to 21 years old served under Individuals with Disabilities Education Act (IDEA), Part B,



2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16
Number Served (Thousands)
All disabilities 6,481 6,436 6,401 6,429 6,464 6,555 6,677
Autism 378 417 455 498 538 576 617
Percentage distribution of children served
All disabilities 100 100 100 100 100 100 100
Autism 5.8 6.5 7.1 7.8 8.3 8.8 9.2
Percentage distribution of children served
All disabilities 13.1 13 12.9 12.9 12.9 13 13.2
Autism 0.8 0.8 0.9 1 1.1 1.1 1.2

Tuesday, June 12, 2018

Stereotypes

In The Politics of Autism, I discuss challenges facing autistic adults and children.  One is stereotyping of autistic people.

At Autism, Caroline Treweek, Chantelle Wood, Jilly Martin and Megan Freeth have an article titled  Autistic People’s Perspectives on Stereotypes: An Interpretative Phenomenological Analysis." The abstract:
Autism stereotypes can often portray autistic people in a negative way. However, few studies have looked at how autistic people think they are perceived by others, and none have specifically asked autistic people what they think the autistic stereotypes are. Semi-structured interviews with 12 autistic adults (aged between 20 and 63 years) were conducted. Using interpretative phenomenological analysis, three main themes emerged from the data. These were as follows: (1) the primary stereotype is that autistic people are ‘weird’; (2) autistic stereotypes have negative effects and consequences; and (3) autistic people are heterogeneous. This study makes an important and novel contribution to understanding the experience of being autistic by exploring how autistic people feel they are perceived by others and identifying some of the ways in which negative stereotypes are believed to have negative consequences for autistic people.

Sunday, June 10, 2018

The Good Doctor and Representations of Autism

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

 Annie Howard writes about at The Hollywood Reporter about David Shore, showrunner of The Good Doctor:
The idea of representation was a central focus of this year's Drama Showrunner Roundtable for the 2018 Emmys season, with creators of The Chi, Power, The Looming Tower and The Handmaid's Tale centering their discussions on how they tell stories of race, ethnicity, religion and gender. David Shore, creator of The Good Doctor — a hospital drama in which the central character has autism —explained his perspective on writing for Freddie Highmore's autistic character.

Shore said having a main character with autism is "not something we see very much." He posed to the Roundtable, "How do I make him fully dimentionalized while being true to people with this condition or on this spectrum? While at the same time, he's representing that condition."
"It's important that I don't turn him into the magic person with autism," Shore told The Hollywood Reporter. "It's important that I be true to his weaknesses and his strengths. It continues to be a challenge."

Saturday, June 9, 2018

Marijuana Veto in Colorado

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. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage
These approaches sometimes include marijuana.

At High Times, Adam Drury reports on Colorado Governor John Hickenlooper (D) vetoing legislation that would have allowed the use of medical marijuana for autism.
Of the 30 states (and D.C.) that have legalized medical cannabis, only 5 consider autism spectrum disorder a qualifying condition. Colorado was poised to become the sixth. But bi-partisan support for the measure was not enough to convince Gov. Hickenlooper to sign the bill.
HB 1263 passed the Colorado Senate with a 32-3 majority. The House voted 54-7 in favor of the bill. But that, and MAMMA’s vocal presence in the capitol Tuesday didn’t sway Hickenlooper.

He says other autism advocates and support groups failed to turn out for (or against) the bill. “Their neutrality speaks volumes,” Hickenlooper said in his office.
The governor also said he hadn’t received any support for the autism measure from certified pediatricians. “I’m sure they’re out there, but I haven’t found a pediatrician yet who thinks it’s a good idea to sign this bill,” Hickenlooper said.
From Hickenlooper's office:
House Bill 18-1263
“While we are very sympathetic with families advocating medical marijuana (MMJ) as a safer and more effective treatment for their children, we cannot ignore such overwhelming concerns from the medical community,” said Governor Hickenlooper in the veto letter. He went on to say, “In vetoing this bill, we do so on sole concern that medical efficacy on MMJ to treat ASD has yet to be fully studied by medical professionals and scientific experts entrusted to this role at the Colorado Department of Public Health and Environment (CDPHE).”
Additionally, an executive order will be issued directing CDPHE, in coordination with the Board of Health, to evaluate the safety and efficacy of medical marijuana for the treatment of autism spectrum disorders in children.
View the entire executive order here.

Gov. John Hickenlooper today signed a letter of support for the “Strengthening the Tenth Amendment Through Entrusting States Act” proposed by Senators Cory Gardner and Elizabeth Warren. This legislation would allow states to adequately regulate their marijuana industries without intervention from the federal government.

"The federal government needs to provide states adequate space to self govern,” said Governor John Hickenlooper. “The issue can no longer be avoided. Ultimately, collaboration with the states will prove critical as the federal government begins to engage on cannabis issues."

You can view the entire letter here.

Friday, June 8, 2018

Buckeye Update

In The Politics of Autism, I discuss interactions between police and autistic people.   Police officers need training to respond appropriately.  When they do not, things get out of hand A case from Buckeye, Arizona is an example.

Suing the Buckeye, Arizona, police officer who beat up their autistic 14-year-old while he was playing with a piece of string in a public park, the boy’s parents say department brass justified it by saying the boy’s repetitive behavior indicated that he was “under the influence of an inhalant.”
Kevin and Danielle Leibel brought their federal complaint Wednesday against Buckeye, its police department and Officer David Grossman on behalf of their son, Connor, in Phoenix, seeking punitive damages on nine counts, including battery, excessive force, negligence, failure to train and illegal arrest. They also sued Police Chief Larry Hall and Lt. Charles Arlak.
Buckeye, pop. 65,000, is a western suburb of Phoenix.
The Leibels claim Grossman had no training in autism and admitted it when Connor’s caretaker asked him after she interrupted the assault. The family says Connor was “forcibly restrained, slammed against a tree, and pinned to the ground by” Grossman.

Thursday, June 7, 2018

A Bad Candidate

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- including casual prejudice against disabled people.

From the R Word Campaign:
A candidate for Oklahoma's state senate chose to use the "r" word to be funny during a Facebook Live video. Leslie NesSmith there is never an appropriate time to use the "r" word.... People with intellectual disabilities have been discriminated against, bullied and even killed just because of their disability. We do not find this funny, humorous or ever appropriate for any human to say, especially someone who wants to stand up for and speak up for those with disabilities at the state senate. I strongly suggest you find and visit with one of the local Self-Advocacy chapters in Oklahoma. I believe you will better understand why this is not just a word, but has historicly been to devalue another human. You can reach the Oklahoma People First here: http://www.okpeoplefirst.org/contact.php 

 

Wednesday, June 6, 2018

Portables


Aleksandra Appleton at The Fresno Bee:
Portables make up half of all classrooms at Fresno Unified elementary schools, and one-third of classrooms district-wide, according to the facilities master plan.

They are a fixture of special education at the district according to Greyson’s father, Michael Kelly.

“It’s always the portable that’s farthest away from everything else,” he said.
Chrissy Kelly said the physical distance this creates between her son, who has autism, and general education students reinforces the false notion that kids with special needs should be kept separate.

“Having special needs is already an isolating condition, and having autism makes socializing difficult for these students,” she said to the board in January 2017. “These children do not need physical segregation added to their struggle."
The six portables at Starr are home to the Autism Special Day Classes, a motor room for students with sensory needs and a music room. They have been used this way since the 2010-11 school year, according to Fresno Unified spokeswoman Jessica Baird.

Tuesday, June 5, 2018

Students with Autism: Nine Percent of Special Ed Enrollment


From The National Center for Education Statistics, The Condition of Education 2018
Enacted in 1975, the Individuals with Disabilities Education Act (IDEA), formerly known as the Education for All Handicapped Children Act, mandates the provision of a free and appropriate public school education for eligible students ages 3–21. Eligible students are those identified by a team of professionals as having a disability that adversely affects academic performance and as being in need of special education and related services. Data collection activities to monitor compliance with IDEA began in 1976.
From school year 2000–01 through 2004–05, the number of students ages 3–21 who received special education services increased from 6.3 million, or 13 percent of total public school enrollment, to 6.7 million, or 14 percent of total public school enrollment.1 Both the number and percentage of students served under IDEA declined from 2004–05 through 2011–12. Between 2011–12 and 2015–16, the number of students served increased from 6.4 million to 6.7 million, while the percentage served remained at 13 percent of total public school enrollment.
 Figure 1. Percentage distribution of students ages 3–21 served under the Individuals with Disabilities Education Act (IDEA), Part B, by disability type: School year 2015–16

Monday, June 4, 2018

The Unintended Consequences of DSM in Australia


Australia's National Disability Insurance Agency may cut off support for autistic people with "level 2" severity u nder DSM-5 ("requires substantial support").  Rick Morton at The Australian quotes Andrew Whitehouse, chief research officer of that country's Co-operative Research Center:
“That first inclusion really only described people who were clearly affected but it prompted a huge amount of research that found the behaviours used to diagnose ­autism can be there even when there is no intellectual disability or language impairment,” Whitehouse says.
“So when the DSM-IV came around in 1994, that was really the tipping point because that ­included all these other conditions such as Asperger’s syndrome, ­autistic disorder and pervasive ­development disorder — not otherwise specified, which is a frighteningly broad term.”
The thinking changed again in 2013 when the fifth edition came out and experts decided there was “no validity in differentiating the conditions”, so they were collapsed back under one umbrella.
As if to underscore the unpredictability of it all, the three levels of autism were added to the ­umbrella to provide some room for movement, but Whitehouse says they ought to be nothing more than a “shorthand descriptor” for clinicians. “They were never designed to be used, and nor should they be used, to apportion support for people with autism."

Sunday, June 3, 2018

Is the Spectrum Too Broad?

In any policy area, the act of gathering data brings out cases. Counting may legitimize discussion of uncomfortable topics. It enables people with a condition to come forward as a group instead of solitary individuals. Official record-keeping opens a channel for reporting: once an organization announces that it is keeping count, people send it information. Such reactive effects are especially strong when benefits attach to membership in a category.
John Elder Robison at Psychology Today:
When psychologists complain that today’s autism spectrum is too broad, one point is seldom mentioned: If not autistic, how would they describe a person who qualifies for an autism diagnosis under DSM5, but would not qualify under DSM III? I am an example, and I can tell you from experience that the diagnostic labels I received prior to being diagnosed autistic were far less useful.
While psychologists might benefit from a smaller more defined spectrum, people like me most assuredly did not benefit from that arrangement. Understanding I am autistic gave me a framework for changing my life. Understanding that I had trouble engaging other people told me nothing beyond what I could see for myself. Other labels I received before my autism diagnosis were useless or even harmful.
Some may argue that lumping bright people and intellectually disabled people into one autism spectrum marginalizes the intellectually disabled people. While I do think bright autistic people shape popular public opinion in ways that are not always realistic, I do not think our presence in the autism community deprives cognitively disabled people of services.

The sad truth is, people with severe cognitive disability have always been hidden from sight, and their treatment has often been poor. Conditions for intellectually disabled people are better overall than they were a generation ago.

Diagnostic labels tend to follow the money. If there is more funding for intellectual disability more people will be diagnosed with ID. The need for services for intellectually disabled people is obvious. The recognition that bright quirky disabled people need help too does not take away from that.

Saturday, June 2, 2018

An App for Screening

In The Politics of Autism, I discuss evaluation and diagnosis of young children.  Screening is an important part of the process.

A release from Duke University:
A Duke study of an iPhone app to screen young children for signs of autism has found that the app is easy to use, welcomed by caregivers and good at producing reliable scientific data.

The study, described June 1 in an open access journal npj Digital Medicine, points the way to broader, easier access to screening for autism and other neurodevelopmental disorders.

The app first administers caregiver consent forms and survey questions and then uses the phone’s ‘selfie’ camera to collect videos of young children’s reactions while they watch movies designed to elicit autism risk behaviors, such as patterns of emotion and attention, on the device’s screen.

The videos of the child’s reactions are sent to the study’s servers, where automatic behavioral coding software tracks the movement of video landmarks on the child’s face and quantifies the child’s emotions and attention. For example, in response to a short movie of bubbles floating across the screen, the video coding algorithm looks for movements of the face that would indicate joy.

In this study, children whose parents rated their child as having a high number of autism symptoms showed less frequent expressions of joy in response to the bubbles.

Autism screening in young children is presently done in clinical settings, rather than the child’s natural environment, and highly trained people are needed to both administer the test and analyze the results. “That’s not scalable,” said New York University’s Helen Egger, M.D., one of the co-leaders of the study.

This study, from informed consent to data collection and preliminary analysis, was conducted with an app available for free from Apple Store and based on Apple’s ResearchKit open source development platform. (Video - https://www.apple.com/researchkit/)

In one year, there were more than 10,000 downloads of the app, and 1,756 families with children aged one to six years participated in the study. Parents completed 5,618 surveys and uploaded 4,441 videos. Usable data were collected on 88 percent of the uploaded videos, demonstrating for the first time the feasibility of this type of tool for observing and coding behavior in natural environments.

“This demonstrates the feasibility of this approach,” said Geraldine Dawson, Ph.D., Director of the Duke Center for Autism and Brain Development and co-leader of the study. “Many caregivers were willing to participate, the data were high quality and the video analysis algorithms produced results consistent with the scoring we produce in our autism program here at Duke.”

An app-based approach can reach into underserved areas better and make it much easier to track an individual child’s changes over time, said Guillermo Sapiro, Edmund T. Pratt, Jr. School Professor of Electrical and Computer Engineering at Duke and a co-leader of the study.

“This technology has the potential to transform how we screen and monitor children’s development,” Sapiro said.

The reported project was a 12-month study. The entire test took about 20 minutes to complete, with only a few minutes involving the child.

The app also included a widely used questionnaire that screens for autism. Based on the questionnaire, participating families received some feedback from the app about what the child’s apparent risk for autism might be. If parents reported a high level of autism symptoms on the questionnaire, they were encouraged to seek further consultation with their health care providers.

...
CITATION: “Automatic Emotion and Attention Analysis of Young Children at Home: A ResearchKit Autism Feasibility Study,” Helen L. Egger, Geraldine Dawson, Jordan Hashemi, Kimberly L. H. Carpenter, Steven Espinosa, Kathleen Campbell, Samuel Brotkin, Jana Shaich-Borg, Qiang Qiu, Mariano Tepper, Jeffrey P. Baker, Ricky Bloomfield and Guillermo Sapiro. npj Digital Medicine, June 1, 2018. DOI: 10.1038/s41746-018-0024-6
https://rdcu.be/Rv0x

Friday, June 1, 2018

Civil Rights and Disability Groups Sue the Department of Education

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

A release from the Council of Parent Attorneys and Advocates:
COPAA’s national network of 2100+ members works to protect the legal and civil rights of students with disabilities and their families. Our members are at work wherever the voices of families and students need to be heard and COPAA supports them with resources, training, and information to assist in obtaining the equal opportunity for education those children deserve and are entitled to under federal law. However, in its 20 year history, COPAA itself, has never before filed litigation on behalf of its members. We have had to take that extraordinary step for the first time because a federal agency has unlawfully abdicated its responsibility to enforce the civil rights of students.

Today COPAA,The National Federation of the Blind (NFB) and National Association for the Advancement of Colored People (NAACP) filed suit against the U.S. Department of Education, Secretary Betsy DeVos and Candice Jackson, Acting Assistant Secretary for Civil Rights, to challenge the Department’s changes to its complaint handling process to strip students with disabilities and students of color of their rights.

In March, 2018, the federal Department of Education amended the Office for Civil Rights (OCR) Case Processing Manual unilaterally and without public notice and comment. The changes include new provisions to mandatorily dismiss certain complaints and the elimination of complainants’ right to appeal OCR decisions. It is the legal responsibility and stated mission of OCR to ensure equal access to education and to promote educational excellence through vigorous enforcement of civil rights in our nation’s schools. As part of that mission, OCR is supposed to investigate complaints made under Title II of the Americans with Disabilities Act, Titles VI and IX of the Civil Rights Act of 1964 and Section 504 of the Rehabilitation Act of 1973 concerning individual or systemic claims of discrimination. By opting out of that mission and abdicating its responsibility, OCR is pushing the responsibility for civil rights enforcement onto the shoulders of students and their families and advocates – onto COPAA’s members – who do not have the resources of the federal government at their disposal.

Students with disabilities have the right to learn free from discrimination in our nation’s public schools. The right of a parent to go to the OCR to raise claims of illegal discrimination is an important tool for halting discrimination in its tracks. Utilizing complaints from parents or others, OCR has served as a civil rights enforcement agency, protecting the rights of some of the nation's most vulnerable students without having to go to court. However, by changing its Case Processing Manual, DOE has summarily eliminated substantive rights of the very people it purports to serve. And they did this without public notice, without seeking or considering public input, without rationale, and in violation of their own regulations.
COPAA, NFB, and NAACP’s lawsuit argues that, at the very least, before adopting rules that limit the rights of citizens, a federal agency must provide for public notice and seek comment from affected individuals and organizations. DOE provided no legal or factual basis to exclude repeat filers without considering the validity of their complaints. Individuals may file more than one complaint when they have been subject to more than one instance of discrimination or when they have been subject to discrimination by different schools. DOE’s decision to block multiple complaints punishes the victims, not the perpetrators, of discrimination.
Whether a person is aware of one violation and files a single complaint or hundreds of violations – it should not matter. The question is are the complaints meritorious or valid? And then if so – what is ED going to do to make sure its funding is not used to support the discrimination?
Several COPAA members have informed COPAA that they have already been subjected to dismissal of their complaints and denials of their appeals pursuant to the 2018 OCR Manual. Others have filed complaints with OCR in the past and are preparing to file, or expect to file, additional complaints in the near future.

We have many members across the country that use the OCR complaint process to protect the right of students with disabilities to be free from discrimination. Parents, advocates and attorneys file complaints on discriminatory and inequitable access to education. The substance of such complaints may involve inaccessibility of physical locations; inability to access programs and services based solely on disability status; unlawful denial of participation in advanced level courses, extracurricular activities or use of a service animal; and denial of equitable access to communication, websites, course materials and more.
While we understand that ED may want to prevent abuse of the system – they should do so with proper notice and comment; and they should do so in a manner that does not take away citizens’ rights. What they have done in this instance is akin to using a sledgehammer to open a nut. Instead of examining the substance of complaints and taking lawful and productive action, they have smashed the system to smithereens, rendering it useless.
The head of a federal Executive Department may adopt rules for the conduct and government of her agency. However, adoption of such rules must comply with the requirements of the federal Administrative Procedure Act, 5 U.S.C., Chapter 5 (§551, et seq.) (APA). Following notice and comment requirements, the proposing agency must consider, prior to adoption of the rule, all written data, views, or arguments submitted by interested persons regarding the proposed rule.

Plaintiffs argue that not only were the notice and comment requirements not followed, the rule changes to the 2018 OCR Manual are arbitrary, capricious, and not in accordance with law. The complaint asks the court to declare parts of the Case Processing Manual invalid and prohibit the Department from implementing them.
COPAA is represented in this litigation by Eve Hill and Brooke Lierman of Brown Goldstein & Levy of Baltimore.

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