Search This Blog

Sunday, October 16, 2016

A Case for Inclusion

In The Politics of Autism, I write about special education and inclusion.

Vikram Jaiswal is an associate professor of psychology at the University of Virginia.  Tauna Szymanski, an attorney and volunteer chair of the Arlington Inclusion Task Force.  They are the parents of a child with autism. With an introduction by Valerie Strauss at The Washington Post, they describe their 7-year-old autistic daughter's exclusion from regular education, and make a plea for inclusion.
Over 30 years of research has shown that students with disabilities learn more and better when they are given the supports they need in regular classrooms, alongside peers who do not have disabilities.
For example, in a recent series of studies[2], Jennifer Kurth and Ann Mastergeorge compared autistic middle schoolers who had been educated since kindergarten in either regular or self-contained classrooms. This placement in kindergarten was determined by Zip code, not ability: Those in the regular classrooms lived in a district that did not have self-contained classrooms; all children were educated together. Students in the two groups had similar IQ scores (none above 70), but those educated in regular classrooms scored five to nine times higher than those educated in self-contained classrooms on every measure of reading, writing, and math achievement given.
This is a dramatic difference, but the explanation is simple: opportunity and access. The autistic students in the regular classrooms had more opportunities to learn. They spent almost 90 percent of their time engaged in instructional activities; those in the self-contained classrooms did so just 60 percent of the time. Most of the rest of their time was spent taking breaks.
Autistic students in the regular classrooms also had more exposure to grade-level material: The curriculum they used was aligned with the one used by the students without disabilities almost 90 percent of the time. In contrast, the curriculum used in the self-contained classrooms was aligned just 0.1 percent of the time. Over one-third of the instruction involved no curriculum at all.
The research on the benefits of educating disabled children in regular classrooms could not be clearer. No study conducted since the late 1970s has shown an academic advantage for students educated in separate settings, but plenty have shown the reverse. The research on the social benefits of including disabled children is similarly impressive: Studies show that disabled children make more friends and feel more connected to the school community when they are educated alongside nondisabled children. There are benefits for the nondisabled peers too: Studies show they exhibit more positive attitudes about diversity and even experience increased academic engagement themselves.

Saturday, October 15, 2016

Trump v. People with Disabilities, Continued

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.

Gideon Resnick reports at The Daily Beast:
Just in case you thought Donald Trump was insufficiently awful: He repeatedly called a deaf actress “retarded,” three sources tell The Daily Beast.

Trump, who was accused on Wednesday of making sexual comments toMarlee Matlin, an Oscar-winning actress who once competed on Trump’sCelebrity Apprentice, also apparently had a habit of insulting, mimicking, and demeaning as mentally handicapped his star female contestant—all because she was deaf.
Ms. Matlin responds:

Friday, October 14, 2016

Autism Speaks: A Change in Mission Statement

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks.

Michelle Diament reports at Disability Scoop that the its board has modified the group's mission statement.
The new iteration is shorter and strikes a markedly different tone. Gone are terms like “struggle,” “hardship” and “crisis.” Also absent is any mention of seeking a cure for the developmental disorder.
“Our mission statement was updated to reflect the evolving strategic direction of Autism Speaks and current needs in the autism community,” C.J. Volpe, the group’s spokesman, tells Disability Scoop.
...
The approval of a revamped mission statement caps a year in which the nonprofit saw significant leadership turnover, bringing on a new president, saying goodbye to its chief science officer and the death of co-founder Suzanne Wright this summer.
Stephen Mark Shore, a member of the Autism Speaks board, said the revision reflects a broader shift for the nonprofit.
Autism Speaks was established more than a decade ago in part by merging with existing advocacy groups including one known as Cure Autism Now. For years, critics blasted Autism Speaks for lacking representation from people with autism themselves. But last year the group invited Shore and Valerie Paradiz, who are both on the spectrum, to join its board.
“Autism Speaks was founded on the goal of curing autism as one of its objectives,” Shore said. “However, similar to many experiences of parents of children with autism, the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum — rather than something that has to be done to.”

Thursday, October 13, 2016

AdvoServ

In The Politics of AutismI discuss dangers facing autistic people, including the use of restraint and seclusion.

Heather Vogell reports at ProPublica:
Once again, government actions against a controversial for-profit company’s chain of group homes for the disabled may have come too late to protect a child. ProPublica has learned that Maryland had begun pulling about 30 children out of homes owned and managed by AdvoServ in August, but hadn’t yet relocated a teenage girl when she died a month later after being manually restrained by staff.
Maryland’s Department of Human Resources had also stopped placing children in AdvoServ homes, following inspections that identified deficiencies in quality control, record-keeping, and conditions in residential and common areas. Last year, ProPublica chronicled AdvoServ’s long record of problematic treatment, its use of mechanical restraints, and its efforts to weaken regulation as it took in more people with developmental or intellectual disabilities and behavior challenges.
...
The girl was not the first teenager to die at an AdvoServ home. In 1997, a 14-year-old autistic boy with epilepsy was found dead in his bed with low levels of anti-seizure medicine in his blood. In 2013, a 14-year-old autistic girl died at the company’s Florida home after a night in which she was restrained — at times fastened to a bed and chair — while she vomited repeatedly.
“The safety of our children is DHR’s top priority and we are taking this case very seriously,” Maryland spokeswoman Katherine Morris said in an emailed statement, referring to the 15-year-old girl’s death. The company said in a brief statement last month that it was “heartbroken over the loss of a young woman in our care.”

Wednesday, October 12, 2016

More on the Endrew F. Case

In The Politics of Autism, I write about IEPs:
At these meetings, the district has several advantages, starting with Board of Education of the Hendrick Hudson Central School District v. Rowley (1982), the first IDEA case to reach the Supreme Court. Amy Rowley was a hearing-impaired girl whose parents wanted her to have a qualified sign-language interpreter in all of her academic classes. The Court said that the district was already supplying her with sufficient supports, and that the law did not require this additional step. Even though the legislation’s sponsors said that its goal was educational equality, the majority found that there was no substantive language in the statute itself regarding the level of education that children with disabilities must get,
Previous posts have discussed an important new caseEndrew F. v. Douglas County School District RE-1 (No. 15-827).
Despite being separated only by the Hudson River, a disabled child who lives in New York City could have a dramatically different life than one who grows up just a few miles to the west in a neighboring New Jersey suburb.
In New York, a student with autism could receive special education services that are just above “trivial.” Yet in New Jersey, courts hold schools to a higher standard.
This disparity is at the heart of the argument Colorado attorney Jack Robinson will make before the U.S. Supreme Court in what’s seen as a potentially pivotal case. Robinson maintains that for 34 years, federal circuit courts have been “in disarray” over the level of special education services a school is required to provide its students under the federal Individuals With Disabilities Education Act.
...
Two circuit courts have ruled that IEPs must provide students a “meaningful educational benefit,” according to the appeal to the Supreme Court; five others have rejected this higher standard, holding that IDEA requires a “just-above-trivial educational benefit.” Three additional circuits appear to agree with the lower standard, and the Ninth Circuit is split, with different panels aligning with opposing standards. The circuit court in Washington, D.C., has not described the level of benefit IDEA requires.

Tuesday, October 11, 2016

Clinton Anti-Trump Ad Centers on Autism

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.

John Wagner reports at The Washington Post:
With Donald Trump bleeding support from high-profile Republicans, Hillary Clinton’s campaign launched a series of television ads Monday seeking to persuade rank-and-file GOP voters to side with the Democratic nominee in November.
The four ads, airing in battlegrounds states, seek to highlight different concerns about Trump, with testimonials from Republican voters as to why they believe he is unqualified to be president.
The ads feature a former Reagan administration official, a Republican mother of a child with autism, a Republican Army veteran and a former local Republican party official.

Addressing the Texas Special Education Scandal

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

Laura Isensee reports at Houston Public Media:
Last week, federal authorities ordered Texas to end its arbitrary benchmark for special education, unless state officials can show no child has been denied services.
Some state lawmakers want to take further steps to eliminate the target, which has drastically limited the number of special ed students in public schools.
“I plan on having a piece of legislation that pretty much says that the TEA (Texas Education Agency) and the school districts are not allowed by law to have any kind of set caps or limits on special education,” said state Rep. Gene Wu, D-Houston. “It’s just, ‘You may not do it.’”
Federal law requires public schools to provide specialized education to all eligible students with any type of disability, and the U.S. Department of Education has put Texas officials on notice for its 12-year-old target.
But some lawmakers want to make sure it doesn’t happen again. Many didn’t know children with disabilities could be denied services until a Houston Chronicle investigation. That’s how Wu found out.
“I was enraged — I almost threw something at my monitor,” he said.
The Houston Chronicle posted the letter from the Office of Special Education and Rehabilitation Services giving the Texas Education Agency 30 days to address the problem.

Sunday, October 9, 2016

Autism Law Summit

At the Autism Law Summit, Judith Ursitti just gave a terrific presentation on housing.  Here are some of the links that she mentioned:
Michele Trivedi, who did landmark work on the Indiana insurance mandate,just did an equally terrific presentation on insurance appeals.  She emphasized the importance of the Mental Health Parity and Addiction Equity Act.


MIND Institute

I have had a wonderful time discussing The Politics of Autism at the Autism Law Summit. Thanks to Lorri Unumb and Mike Wasmer.

At The Atlantic, Joceyln Wiener reports on The MIND Institute:
Nearly two decades after the men first imagined it, the MIND Institute counts among its ranks 55 of the world’s premier scientists working on autism and other neurological conditions. Most researchers are based in two neighboring buildings on campus; the rest are scattered in departments across the university. MIND has research grants and contracts that total about $25 million annually, the majority of them from the National Institutes of Health (NIH). The state of California kicks in about $2.7 million a year.
 Over the years, the institute’s researchers have made major discoveries in the fields of neuroscience, immunology, behavioral and language interventions, environmental toxicology and targeted treatments. “MIND and the investigators that are present there have been central to most of the significant developments within autism research within the last decade or so,” says Mathew Pletcher, interim chief science officer for the advocacy organization Autism Speaks.Their early goal for the institute—finding a ‘cure’ for their children’s autism—has become increasingly controversial.
What sets MIND apart, he and others say, has been its focus on collaboration: between experts from different disciplines, with other universities, and between researchers, clinicians and families. This type of integration was part of the institute’s founding vision.
Families have driven research fundraising for a host of childhood conditions. This is hardly surprising; nothing motivates parents like seeing their children suffer. In the 1990s, as autism diagnoses were accelerating but research funding remained sparse, parent-led research efforts emerged en force.

The small cadre of parents who formed MIND were especially well positioned. By the time their young sons were diagnosed with severe autism, many were community leaders in Sacramento, California’s state capital. They used their connections, influence, skill, and passion to amass funding and political support for the new institute. Their vision influenced everything from the organization’s research agenda to the color of its walls.
In the early years, these parents sat on grant evaluation panels, helping to decide which pilot research proposals would be funded. They pushed for the creation of the International Meeting for Autism Research, which today brings together more than 2,000 researchers, advocates and family members from around the world. But their early goal for the institute—finding a ‘cure’ for their children’s autism—has become increasingly controversial.

Saturday, October 8, 2016

DA's Antivax Stand Causes Problems

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

Guillermo Contreras reports at The San Antonio Express-News
As District Attorney Nico LaHood tightens his embrace of anti-vaccination activism, his critics don’t just include medical professionals.

Lawyers who helped elect him — and who have spent months shaking their heads at multiple controversies involving him — say LaHood’s strenuous advocacy for the debunked notion that childhood vaccines “can and do” cause autism, as he put it, could put the integrity of his office at risk.
...

His stance against vaccinations could affect child-custody and child-abuse cases, where Texas Child Protective Services caseworkers are represented by LaHood’s staff, they pointed out. In many cases, LaHood’s prosecutors have argued that failing to vaccinate kids is medical neglect, said defense attorney Joseph Hoelscher, who has sparred with LaHood on social media.

“So the next time I deal with that in court, what is the prosecutor going to say?” Hoelscher asked. “There’s a lot of cases where parents have arguments with CPS about their child’s medical care, and having a DA take a fringe position like this undermines the credibility of the department’s medical decision-making.”

Friday, October 7, 2016

ABLE Act Controversy

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

The ABLE Act limits accounts to people with disability onset before age 26.  Michelle Diament reports at Disability Scoop:
Just last month, the U.S. Senate Committee on Finance approved two bills giving more flexibility to those who are already eligible for ABLE accounts. The ABLE to Work Act would allow people with disabilities who are employed to save additional money each year in their accounts while the ABLE Financial Planning Act would let money saved for an individual with a disability in a 529 college savings plan be rolled over into an ABLE account.
However, a third bill — raising the eligibility age to 46 — was left out of any discussions before the Senate committee. And that has many advocates feeling shortchanged.
“The limitation on eligibility based on age of onset of disability did not exist in the original legislation and was added at the end of the ABLE Act’s eight year legislative history with the understanding that Congress would act to restore the broader eligibility criteria,” reads letters signed by 82 disability advocacy groups that were sent this week to key lawmakers in the Senate and U.S. House of Representatives.
The last-minute addition of the age criteria led many people who had championed the ABLE Act for years to be left out, said Chris Rodriguez, senior public policy advisor at the National Disability Institute and co-chair of the Consortium for Citizens with Disabilities Task Force on Financial Security, which initiated the correspondence to lawmakers.
...
Groups that have pledged to oppose some ABLE bills include The Arc, the Autism Society, the Autistic Self Advocacy Network, the National Down Syndrome Congress, United Cerebral Palsy and others largely representing individuals who would easily meet the existing cutoff at age 26.

Thursday, October 6, 2016

Senators Push for TRICARE Funding

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 release from Senator Thom Tillis:
Bipartisan Group Of Senators Call For Sustained Funding For Autism Therapy For Military ChildrenOct 04 2016

Senators Thom Tillis (R-NC), Kirsten Gillibrand (D-NY), Bob Casey (D-PA), Roger Wicker (R-MS), Amy Klobuchar (D-MN), and Chris Murphy (D-CT) sent a letter to the Chairmen and Ranking Members of the Senate and House Appropriations Committee urging funding to be included in the final version of the FY 2017 Department of Defense Appropriations Act to reverse cuts to reimbursement rates for Applied Behavioral Analysis (ABA) treatment for military children with Autism Spectrum Disorder (ASD) to ensure they can continue to receive care under TRICARE.
TRICARE is a managed health care program for active duty, reserve component and retired members of the uniformed services, their families, and survivors. TRICARE began a demonstration project last year to provide a single, uniform benefit to the estimated 26,000 TRICARE beneficiaries with ASD. However, in April, TRICARE adjusted the reimbursement rates to providers of ABA therapy threatening a severe reduction in access to crucial ABA services for dependents with ASD. The Senators called on the committees to ensure the final appropriations for the Department of Defense include a reversal in the TRICARE cuts to mirror this reversal in the House and Senate National Defense Authorization Act bills.
“ABA therapy is an intensive one-on-one therapy usually conducted at the home of the recipient. One of the objectives of the demonstration program was to provide a single, uniform benefit to the estimated 26,000 TRICARE beneficiaries with ASD, and approximately 40% of eligible beneficiaries receive ABA services under this program,” the Senators wrote. “We request that you include $32 million in the final appropriations bill that provides funding for the Department of Defense for FY 2017. These funds will ensure that military children with ASD in need of therapy can obtain the services they and their families deserve.”

Tuesday, October 4, 2016

Not Who We Are: An Autistic Person v. Trump

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally.

At the Not Who We Are PAC, Alicia Bonus writes:
I am a 28 year old writer living in Pennsylvania. Early on in life, I was diagnosed with Aspergers Syndrome (Autism) around the age of five. At age 10, I was also diagnosed with Ulcerlative Colitis (Crohns Disease). During the past decade, I have missed opportunities, due to this disease. I had to hold off practicing driving to get my license, I didn’t go to prom, and I couldn’t work during the summer. Fortunately, because of Medicare I was able to get treatment, complete my college degree, and live a full life.

As a person with Aspergers Syndrome, I was extremely offended when Donald Trump called a well-known and hard working reporter a liar, let alone mocked him in public in front of thousands and possibly millions of people. I have a disability and know what it’s like when people bring you down. I want a leader that can see what we can do to make a difference in the world. I want a leader who can take us seriously at what we do. I want a leader that believes in us all, no matter how different we may be. I don’t want Donald Trump.

------------------------------------
As a member of the Autism community, I invite all members to stand together against the racial, religious and other intolerance that Donald Trump’s policies and rhetoric promotes. It is putting our Latino, Muslim-American, those with disabilities, and other community members directly at risk.
There is no place for this kind of discrimination in America.
As a community, we affirm the values that make us who we are: diversity, openness and compassion.
Join me in saying: Donald Trump is not who America is, and he is not who Autism is.
Why is this important?

This is important as a member of the Autism community...As a person with Aspergers Syndrome, I was extremely offended when Donald called a well-known and hard working reporter a liar, let alone mocked him in public in front of thousands and possibly millions of people. Having Aspergers, I too have a disability and know what it's like when people bring you down. Little do many people across the U.S. know that many people with disabilities and autism are being hired everyday, due to their constant routines and hard work. Most importantly, they are known to be good at what they do and are honest about it, because they want to show what they can do and are proud of it. As a person with autism and disabilities, I want people to notice me by what I can do and not what I can't do. I want a leader that can see what we can do to make a difference in the world. I want a leader who can take us seriously at what we do. I want a leader that believes in us all, no matter how different we may be. I don't want Donald Trump.