Jill Biden, Autism, and the Military

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.

Abbie Shull at The News Tribune (Tacoma, WA) reports that Dr. Jill Biden visited Joint Base Lewis-McChord on March 9., touting a relaunch of a military family outreach program she started during the Obama administration.

Biden toured the Children's Museum on JBLM with Gov. Jay Inslee and I Corps commander, Lt. Gen. Randy George. The museum is a joint effort between the base and Children's Museum of Tacoma and is set to formally open April 24.

The director of learning experiences at the museum, Alyssa Tongue, showed Biden the new water feature and a sensory exhibit and "calm room" designed for children on the autism spectrum.

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Biden's visit is part of an ongoing effort to relaunch Joining Forces, a program she started with former first lady Michelle Obama during the Obama administration. Biden said Joining Forces focused on employment, education and wellness programs for military families, and she hopes to continue those efforts while listening to the evolving needs of the families.

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Biden also met with representatives from the JBLM Center for Autism Resources and Education Services (CARES) program which supports families who have children or dependents on the spectrum. JBLM CARES is the only program of its kind in the Department of Defense, which has made the base home to the largest population of military dependents with autism.

62nd Airlift Wing Lt. Col. Rebecca Christi is a developmental behavioral pediatric fellow at Madigan Army Medical Center and the mother of two children with autism. Christi told Biden how JBLM's resources have made it easier for her children to receive specialized education that was unavailable at her previous duty stations.

Christi said she was glad Biden seems ready to focus on the needs of families with special needs children.

"We need to focus on sustaining the model that JBLM has provided," Christi said. "Getting appropriate classroom placement for my son has been essential."

President-Elect Biden

In The Politics of Autism, I discuss the issue's role in campaigns.

Ja’han Jones at HuffPost:

On Saturday night and through Sunday morning, President-elect Joe Biden was praised by members and advocates of the disabled community who celebrated the reference to “disability” in his victory speech.

“We must make the promise of the country real for everybody — no matter their race, their ethnicity, their faith, their identity or their disability,” the president-elect said Saturday night in Wilmington, Delaware.

To some, Biden’s reference marked a stark contrast to President Donald Trump, a vocal opponent of health science whose list of ableist behaviors includes mocking a disabled reporter in 2016 and instituting policies that made it difficult for disabled immigrants to receive vital health benefits.

On social media, disabled activists and allies to the movement instantly took note of Biden’s call for them to be afforded equal opportunity, and many used the hashtag #CripTheVote in reference to the years-long campaign to realize the disabled community as a critical voting bloc.

Biden was not the first, however.

 

Was curious if other presidents had mentioned disability in victory speeches and Obama said in 2008 "It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled."

— Eric Michael Garcia (@EricMGarcia) November 9, 2020

Trump v. the Disability Community

In The Politics of Autism, I discuss the issue's role in presidential politics.   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.

Liz Plank reports at Vox:

According to organizers of the Women’s March on Washington, people with disabilities will be participating in droves, with a number expected to shatter any previous records of past rallies for people with disabilities.

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“This is going to be massive,” Ted Jackson, the logistics team accessibility lead at the Women’s March, told Vox on Thursday. “Estimates are that [there] are at least 45,000 people with disabilities showing up, which should be the largest assembly of people with disabilities in US history.” He said this would exceed some of the most significant demonstrations on record, like the one organized by disability advocates after the Senate passed the Americans With Disabilities Act (ADA), which garnered around 8,500 protestors.

 Valerie Strauss reports at The Washington Post:

During the Obama administration, there was a page on the White House website that had information about federal policy regarding people with disabilities. Its URL was https://www.whitehouse.gov/issues/disabilities. Not under the Trump administration. The Trump-run White House website — which went live moments after Friday’s inauguration of President Trump — says: “You are not authorized to access this page.”

The Obama White House website page labeled “Contact the Disability Issues Outreach Team | The White House” isn’t there any longer either. Click on it and it now says: “The requested page/disability-issues-contact could not be found.” And the Obama White House website’s fact sheet about expanding opportunities for people with disabilities is gone too. (You can see the former disabilities page here.)

Archiving website pages from past administrations is common practice, and restructuring websites from administration to administration is, too. What is interesting here is that the website team didn’t find the time to make sure there were replacements for the disabilities information they were taking down before Inauguration Day.

Special Needs Trust Fairness Act

In The Politics of Autism, I discuss special needs trusts.

A release from Tucker Arensberg:

On December 14, 2016, President Obama signed the Special Needs Trust Fairness Act into law amended federal law to enable disabled individuals to establish their own first-party payback Special Needs Trusts under 42 U.S.C. § 1396p(d)(4)(A).

Prior to the passage of the Special Needs Fairness Act, federal law required disabled adults who were capable of handling their own affairs (and thus without legal guardians) to rely upon their parents, their grandparents or the courts to establish a first-party funded non-pooled payback Special Needs Trusts for their benefit.

This requirement was at odds with the fact such Trusts were effectively being funded by such disabled individuals with assets legally belonging to them (i.e. not third-party funds). This requirement was also inconsistent with the law governing the creation of Pooled Special Needs Trust under 1396p(d)(4)(C), which has always allowed disabled individuals to create their own first-party funded Pooled Special Needs Trust with non-profits. It is believed that this inconsistency was due a drafting oversight in the law since its enactment over 20 years ago.

A first-party funded Special Needs Trust is an invaluable planning tool that enables disabled individuals who receive assets outright, including through a gift, inheritance, personal injury settlement or child support, etc. to protect such assets for their future use while remaining eligible for essential means-tested government benefits like Supplemental Security Income and Medicaid (also known as Medical Assistance).

The Special Needs Fairness Act has removed a major obstacle and inequitable hurdle for the establishment of Special Needs Trust by competent, disabled adults and will greatly simply their planning. Such individuals previously needed to seek court involvement and incur unnecessary delays and legal and court costs to establish first-party funded Special Needs Trusts. With the passage of this Act, such individuals are now able to set up their first-party funded Special Needs Trusts special needs trust without having to petition the court sand incur unnecessary legal costs, loss of privacy.

The Special Needs Fairness Act will amend Section 1396p(d)(4)(A) of the Social Security Act to exclude first-party funded Special Needs Trust as a transfer for less than fair consideration and countable asset as follows:

“A trust containing the assets of an individual under age 65 who is disabled (as defined in section 1382c(a)(3) of this title) and which is established for the benefit of such individual by the individual, a parent, grandparent, legal guardian of the individual, or a court if the State will receive all amounts remaining in the trust upon the death of such individual up to an amount equal to the total medical assistance paid on behalf of the individual under a State plan under this subchapter.”

This amendment will apply to trusts established on or after the date of the enactment of the Special Needs Fairness Act, and thus while greatly beneficial to the prospective establishment of such Special Needs Trust won’t necessarily remove obstacles faced by individuals who had previously established Trusts in contravention of then-existing laws.

This change is also similar to the recently enacted Achieving Better Life Experience (ABLE) Act and the ABLE accounts it allows certain disabled individuals to creatd. While ABLE accounts are another useful planning tool they do have many restrictions that inapplicable to Special Needs Trusts. Use this link to view prior blog posts.

Presidential Proclamation on World Autism Awareness Day 2016

In The Politics of Autism, I discuss efforts to raise the issue's profile. A White House release on World Autism Awareness Day:

Every person deserves the chance to reach for their highest hopes and fulfill their greatest potential. On World Autism Awareness Day, we reaffirm our dedication to ensuring that belief is a reality for all those who live on the autism spectrum ‑‑ including 1 in 68 children. And we uphold our obligation to help make sure every man, woman, and child, regardless of ability or background, is accepted for who they are and able to lead a life free from discrimination and filled with opportunity.

From home to school and in businesses and communities around the world, people living with autism spectrum disorder contribute in immeasurable ways to our society. They remind us each day that every person is born with unique talents and should be treated with respect, play an active role in planning for their futures, and feel empowered to fully participate in and contribute to their communities. When those with autism have access to equal opportunities, we all do better, and that begins with making sure our country lives up to its commitment to ensure all things are possible for all people.

Individuals with autism are just as deserving of the peace of mind that comes with having quality, affordable health insurance as anyone else. The Affordable Care Act helps ensure no person is prevented from obtaining health coverage simply because they live with a preexisting condition like autism, and it requires most plans to cover recommended preventive services ‑‑ including critical screenings that test for autism in children. My Administration is dedicated to ensuring educational opportunities for autistic students are worthy of their extraordinary potential and to providing Americans with autism the chance to earn good jobs and hone their skills and talents. We are working to break down barriers to competitive, integrated employment for people with disabilities, including people with autism. We are also promoting inclusivity for kids with autism in high-quality, early childhood education programs. In 2014, I signed the Autism CARES Act, which supports autism‑related research and helps us to better understand the particular challenges faced by students and young adults living on the autism spectrum. And this month marks 3 years since my Administration launched the BRAIN Initiative ‑‑ a collaborative effort by Federal agencies, philanthropies, universities, foundations, and others in the medical and scientific communities that aims to accelerate our work to solve some of the most intricate mysteries of human brain function and reveal new insights into conditions like autism. In my most recent budget proposal, I was proud to support increased funding for this important initiative.

Americans with autism play an important role in our national story, and in their daily lives they embody the belief at the heart of our founding: that in America, with hard work and equal access, all people can realize their aspirations. Today, and every day, let us reach for a future in which no person living on the autism spectrum is limited by anything but the size of their dreams ‑‑ one in which all people have the opportunity to live a life filled with a sense of identity, purpose, and self-determination.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim April 2, 2016, as World Autism Awareness Day. I encourage all Americans to learn more about autism and what they can do to support individuals on the autism spectrum and their families, and to help shape a world in which all people, including those with autism, are accepted for who they are.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of April, in the year of our Lord two thousand sixteen, and of the Independence of the United States of America the two hundred and fortieth.

BARACK OBAMA

Update on Reactions to Clinton's Autism Plan

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign. Previous posts noted some reactions to the plan, and here is an update.

At Spectrum, Jessica Wright has reactions:

• Julia Bascom: As an autistic self-advocate, there’s a lot to like about Clinton’s autism plan. The focus on substantive policy issues is great to see. You can tell the campaign did a deep dive here. The plan focuses primarily on the concrete needs of autistic people and our families, which is a refreshing change of pace from much of the national conversation about autism, which is still focused on ideas about cure and tragedy. Clinton isn’t scared of autism: She recognizes autistic people and our families as constituents with very real needs and priorities, and she’s got a plan to start meeting those needs...

Amy S. F. Lutz at The Jewish Week:

Some parents of severely autistic kids have opposed the plan because it fails to include any mention of autism prevention. And its language certainly reflects the position of autistic self-advocates that autism isn’t a disease that needs to be cured but a different skillset that just needs more societal support. Still, there are components that will doubtlessly help those with more profound impairments, including increased insurance coverage of therapies, support for caregivers and accessibility of communication devices. And Clinton’s call for the “first-ever adult autism prevalence and needs study” reveals an interest in data that I can’t help but hope will drive policy in the future.

Alyson Klein at Education Week:

On Clinton's wish list: enacting the "Keeping All Students Safe Act," which was championed in previous Congresses by Rep. George Miller, D-Calif., and Sen. Tom Harkin, D-Iowa, both now retired. The bill would limit seclusion and restraint as means of controlling students in special education, particularly if there is a risk of injury, and would prevent these practices from being included in students' Individualized Education Programs, or IEPs.

So far, the bill hasn't gotten much traction in the GOP-controlled Congress, but similar measures have gained in popularity in state legislatures.

That doesn't mean everyone is a fan of such policies. Back in 2012, AASA, the School Superintendents' Association, came out against the measure. AASA is still concerned about any legislation that would prohibit local districts from considering the use of seclusion and restraint, after other interventions (like Positive Behavioral Intervention and Supports) have failed.

And Rep. John Kline, R-Minn., the chairman of the House education committee, expressed concerns back in 2012 that the bill could hinder state efforts to deal with the issue. (Kline will soon be out of office, but other lawmakers may take a similar view.) What's more, the newly enacted Every Student Succeeds Act includes language cracking down on discipline practices that remove kids from the classroom, including seclusion and restraint.

Jennifer Martinez Belt at The Arkansas Democrat-Gazette:

So I was delighted by Hillary's plan--but I can't say I was surprised. As a native Arkansan, I saw her advocating for the children of this state from the moment she arrived in Little Rock.

As first lady, Hillary fought for more awareness and funding for autism research. In the Senate, she introduced the bipartisan Expanding the Promise for Individuals with Autism Act. Throughout her career, she's proven to be a champion for families by digging into the finer points of issues like autism to identify and prevent the specific fears that really keep parents up at night.

For the families of the 3.5 million Americans with autism spectrum disorder, these issues are deeply personal to us. Hillary has always understood that.

And my hope is that if more people show her kind of leadership, kids like Thomas will finally be able to grow up to become anything they can imagine.

Autism, Disability, and Gun Control

In The Politics of Autism, I write:

There is no evidence linking autism to planned violence, but in recent years, mass shootings by young men have led commentators in the mainstream media and on the Internet to suggest such a connection. After the 2007 Virginia Tech massacre, for instance, news reports said that the shooter was on the spectrum. The speculation made little sense to anyone who understood autism. Whereas autistic people have language delays and deficits, the killer had learned English as a second language — and learned it well enough to major in the subject in college. Later on, it turned out that he had an entirely different problem, a social anxiety disorder. Adam Lanza, who committed the Sandy Hook massacre in 2012, may have had an Asperger’s diagnosis, but his father emphasized that his behavior stemmed from the psychiatric illnesses that he also had. Nevertheless, the media speculated about Lanza’s place on the spectrum, which worried autism parents. One mother of an autistic child wrote: “This is the first time I'm truly afraid for him. Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.”

From the Autistic Self-Advocacy Network:

In light of the recent announcement that the Obama Administration intends to utilize the Social Security Administration’s (SSA) Representative Payee database to feed the names of people with psychiatric disabilities requesting assistance in managing their financial affairs into the National Instant Criminal Background Check system to prevent firearms purchases, the Autistic Self Advocacy Network has grave concerns as to the precedent this sets regarding the rights of people with disabilities.

In the aftermath of the tragic shootings in San Bernardino, Newton and elsewhere, many have sought to scapegoat people with psychiatric disabilities for mass shootings, contrary to a wealth of evidence in the scientific literature demonstrating no link between mental health and violence. People with psychiatric disabilities are already far more likely to be the victims of violence than people without disabilities, and deserve better than to be stigmatized by inaccurate and harmful rhetoric.

The representative payee system is designed for the sole purpose of allowing individuals to select a trusted person to assist them in managing their finances. The precedent of deeming an individual incompetent to assert any other right as a result of representative payee status is deeply concerning and might lead to further restrictions on key rights, such as voting or parenting, in the future. The proposed measure might also make it less likely that those who require financial assistance will be willing to utilize the SSA’s representative payee system.

Such a proposal tells Autistic Americans, seniors with dementia, youth with Down Syndrome leaving school and people with countless other psychiatric and neurological disabilities of all kinds that struggling to manage their finances means they are to be deemed incompetent in other areas of life as well. This is unacceptable.

We urge the Obama Administration and the Social Security Administration to reconsider this course of action and remove this measure from further consideration.

From the American Association of People with Disabilities:

The recent proposal announced by the Obama Administration to reduce gun violence contains certain provisions falsely assuming that people with psychiatric disabilities have a propensity for violence. As cited in AAPD’s publication Grounded in Faith, the MacArthur Study of Mental Disorder and Violence – the most rigorous scientific study conducted to date by the country’s leading experts in mental health and violence – found that a person with a psychiatric disability is no more likely to be violent than a person without one. In fact, people with psychiatric disabilities are far more likely to be the victims of violence than people without disabilities. The disability community deserves better than to be stigmatized by inaccurate and harmful rhetoric.

Specifically, AAPD opposes the Obama Administration’s plan to utilize the Social Security Administration’s (SSA) Representative Payee database as a way to identify ‘dangerous’ individuals who should be prevented from purchasing firearms.

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“AAPD supports the President in taking commonsense steps to make our communities safer, but utilizing the representative payee database as a way to identify people who are likely to commit gun violence is a useless and harmful proposal” said Michael Murray, AAPD’s Chief Operating Officer. “It unfairly stigmatizes millions of Americans with disabilities who make tremendous contributions to our society and pose no threat of violence. The likely effect of such efforts will be to discourage many from acknowledging and seeking support for a psychiatric disability, while having absolutely no impact on gun violence. The proposed measure might also make it less likely that those who need financial assistance will be willing to utilize the SSA’s representative payee system. This is unacceptable.”

Autism and Presidential Politics

In The Politics of Autism, I discuss the issue's role in campaigns.

The Chicago Tribune editorializes:

Which candidate for president made the following statement about childhood inoculations? "We've seen just a skyrocketing autism rate. Some people are suspicious that it's connected to the vaccines."

Or this one? "It's indisputable that (autism) is on the rise amongst children, the question is what's causing it. And we go back and forth and there's strong evidence that indicates that it's got to do with a preservative in vaccines."

If you answered Donald Trump, nice try, but wrong. The first one was made by Barack Obama when he ran in 2008. The second came from his opponent, John McCain.

While running for president in 2011, Rep. Michele Bachmann, R-Minn., raised similar doubts about the HPV vaccine, recalling a woman who approached her after a debate. "She told me her daughter suffered mental retardation as a result of that vaccine," Bachmann said.

Maybe it's time for political parties to require a science course for anyone who wants their nomination. Misinformation about vaccines has become a stubborn, recurring feature of presidential campaigns.

Dr. Marc Siegel writes at Slate that Ben Carson and Rand Paul mildly disagreed with Trump:

Unfortunately, Carson went on to promote another fear-driven myth about vaccines. He added that “we are probably giving way too many in too short a period of time.” There is not a shred of scientific evidence to back this up. Rand Paul, an ophthalmologist and another candidate on the stage, echoed his fellow doctor’s concerns about bunching vaccines.

Both of these physicians have had great accomplishments in the medical world, Carson as a pioneer neurosurgeon and Paul as a successful eye surgeon. As a fellow physician it was unsettling to me to see them speculating wildly outside their areas of expertise, especially in the wake of Trump’s dangerous comments. They should have known better.

Scientists continually reassess whether a contagious disease is enough of a threat to prompt a national vaccination campaign. Vaccines and the way they are scheduled and bunched are rigorously tested for safety and efficacy. In fact, immunizations are some of the most-tested medical interventions in use today.

There is also simply no evidence that too many vaccines over-stimulate the immune system, a common fear among parents. In fact, young children encounter thousands of far more powerful immune-stimulating microbes in between vaccinations than during them.

Modest Increase for IDEA

Christina Samuels reports at Education Week:

Special education would see modest increases across the board in the budget proposal released Monday by the White House, but the money would still not approach the "full funding" that has been supported by a bipartisan group of lawmakers and by U.S. Rep. John Kline, a Republican from Minnesota and the chairman of the House education committee.

Funding for the Individuals with Disabilities Education Act in the U.S. Department of Education is split into several categories. The largest by far is IDEA Part B, which provides federal funding for students ages 3 to 21. The proposed increase for that program for fiscal 2016 is $175 million, taking the program from about $11.6 billion to approximately $11.7 billion.

Another portion of IDEA funding is Part C, which pays for early-intervention services for infants and toddlers up to age 2. I've written before about how Part C has not gotten the same level of funding attention as other early-childhood initiatives, but it does get a small bump in the proposal, from $439 million to $504 million.

Obama Signs ABLE Act

A release from Representative Ander Crenshaw:

Congressman Ander Crenshaw, author of the Achieving a Better Life Experience Act (ABLE Act), announced today (12/19) that President Barack Obama has signed his legislation into law. The action caps more than eight years of teamwork to create tax-free savings accounts for millions living with disabilities. These Americans and their families will now have the same financial planning tool available to others as they reach for every possible piece of the American dream.

Crenshaw, House-side author of the ABLE Act, who first introduced seed legislation to create ABLE accounts in 2006, issued the following statement:

“The ABLE Act is now law of the land, and a brighter future opens to millions of individuals living with disabilities. I am privileged to have been in a position to guide this reform from an idea into a law and never doubted we would reach our goal. Credit goes to fantastic teamwork from House and Senate Members on both sides of the political aisle and determination from hundreds of advocacy groups across the nation. Their focus and drive to educate Capitol Hill on the need for this law made a key difference.

“Positive achievements can be made by working together to improve the quality of life for those in need. The ABLE Act proves that. ABLE accounts open the door to financial peace of mind for so many. These Americans will no longer stand on the sidelines asking why can’t I use IRS-sanctioned tools to put money away for my future like others. They will be in the game and playing to win.”

BACKGROUND: Officially titled The Stephen Beck, Jr. Achieving a Better Life Experience Act of 2014, in honor of its long-time champion who passed away unexpectedly on December 8, the measure marks the first major legislative reform to impact the disabled since the 1990 passage of the Americans with Disabilities Act. Beck, of Burke, VA, had advocated for the reform early on. His young daughter Natalie was born with Down syndrome,

The law amends Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for qualified expenses. Benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources would be supplemented, but not supplanted by the legislation. The bill passed the House on December 3 by a vote of 404-17 and was included Tax Extenders legislation which passed the Senate by a vote of 76 – 16. President Barack Obama signed the measure into law on Friday, December 19.

Editor’s Note: Go to www.crenshaw.house.gov for more information about the history of the ABLE Act.

Aspergery and Apologies

At least one Obama administration official has referred to Israeli Prime Minister Netanyahu as "Aspergery."

The Jewish Daily Forward reports:

“The term “Aspergery” was used in a manner that is insulting to the millions of people around the world with Asperger Syndrome,” said Jay Ruderman, president of the Ruderman Family Foundation, in a press release responding to the article. “It is never OK to insult someone by referring to them by using disability in a negative manner.”

Jennifer Laszlo Mizrahi, who heads RespectAbility, an organization devoted to helping people with disabilities, wrote to White House chief of staff Denis McDonough also complaining about the use of Aspergers as a slur.

“I was really stunned that the insults from the White House used a derogatory term connected to Autism Spectrum Disorder as a way to insult PM Netanyahu,” she wrote. “As the parent of a child on the Autism Spectrum and a disability advocate, I would hope that our president, as well as you as chief of staff, will make it clear that such bullying has no place in our nation.”

The White House responded quickly and on Thursday administration officials reached out to Ruderman, telling him it was an “unfortunate misuse of language” and promising that the issue has been raised at higher levels.

“I’m glad we put this issue on the radar,” Ruderman told the Forward. “It is a perfect teaching moment to come out against using disabilities in a derogatory way.”

The Times of Israel reports:

“Certainly, that’s not the administration’s view, and we think such comments are inappropriate and counterproductive,” said National Security Council spokesman Alistair Baskey, according to the Washington political journal The Hill. “Prime Minister Netanyahu and the president have forged an effective partnership, and consult closely and frequently, including earlier this month when the president hosted the prime minister in the Oval Office.”

Secretary of State John Kerry said Thursday that the statements were “disgraceful, unacceptable, and damaging.” On Friday, Kerry telephoned Netanyahu to apologize in person on behalf of the administration.

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Asperger's As Slur

Pop culture figures sometimes use autistic as a slur. "Political autism" has sometimes cropped up as a term of abuse, mostly in Britain, though sometimes in the United States.  A few weeks ago, Wesleyan professor Peter Rutland wrote in the prestigious publication Foreign Policy:  "Nationalism is a form of political autism, reacting in an excessive and unpredictable fashion to outside stimuli. Only patient diplomacy, mutual understanding, and the study of history can steer East Asia to a peaceful future."

At The Daily Beast, Emily Shire writes about one variant:

Jeffrey Goldberg’s column in The Atlantic detailing the Obama administration increasingly frosty relationship with Israeli prime minister Benjamin Netanyahu sent geopolitical tongues wagging. Details of administration officials’ list of private insults to describe Netanyahu include chickenshit, myopic, obtuse, blustering. But one description was abhorrent on a level far above politics: “Aspergery.”

Despite the fact that it is incredibly offensive to people on the autism spectrum and the disability community to use the word “Aspergery,” no one on the right or left has criticized the Obama administration for reportedly using the term. While pundits scramble to analyze international implications, no one seems especially perturbed that the highest executive office allegedly throws around a “disability diagnosis as a pejorative,” as Ari Ne’eman, president of the Autistic Self Advocacy Network, puts it.

Obama Signs Autism CARES Act

Michelle Diament reports at Disability Scoop:

With little fanfare, President Barack Obama signed a reauthorization of the nation’s primary autism legislation that includes more than a billion dollars in federal funding for the developmental disorder.

Signed on Friday, the law calls for $260 million annually through 2019 for autism research, prevalence tracking, screening, professional training and other initiatives.

The measure known as the Autism Collaboration, Accountability, Research, Education and Support Act, or Autism CARES, serves as a renewal of what’s previously been called the Combating Autism Act. That law, which was first enacted in 2006, was set to expire September 30.

"Please, can you help me go to college?" -- An Update

A previous post mentioned Billy Pagoni, who asked President Obama for help in his quest to go to college.  Fox provides an update:

The video garnered attention from people all over the world, as well as feedback from a White House spokesperson, who provided Edith with a list of colleges that offered educational programs for autistic students. However, after meeting with these colleges, Edith found their programs to be more geared towards those with high functioning autism, such as Asperger’s syndrome – and since Billy had a more severe form of the disorder, he couldn’t quite fit in.

As a result, Edith was forced to find alternative solutions to meet Billy’s educational needs.

Fortunately, Billy was able to get a glimpse of the college experience when his family moved back to Connecticut and enrolled him in a special program at Quinnipiac University in Hamden. There, he was able to finish his senior year of high school while living on campus and learning how to function on his own.

But after graduating in May of 2013, Billy still wanted to continue his educational career. That’s when Edith stumbled upon G.R.O.W.E.R.S. Inc., a company aimed at helping people with developmental disabilities perform useful skills and tasks in a normal work environment.

Edith said this program has been extremely beneficial for Billy, as they try to assess his options for future education and employment.

“We’re kind of in a transitional stage,” Edith said. “He really wants to continue with that post-secondary academic experience, but we have to carve it out for them, because there really are no programs out there.”

At G.R.O.W.E.R.S. – which stands for Growing Real Opportunities with Educational Relationships & Stability – Billy and other adults work together to grow flowers and plants in a greenhouse, while attending to additional responsibilities surrounding the horticulture business. The program is meant to cultivate the specific needs of each participant, depending on what they want to achieve in the future.

Bad Sign

Many posts have discussed insulting language aiming at ASD people and others with disabilities. Buzzfeed reports:

The bipartisan co-chairs of the House Disabilities Caucus condemned a sign reading “Thank You Tea-Tards” spotted at an Organizing For Action event on Capitol Hill Tuesday. The event was designed to pressure Republican leaders in Congress to abandon the conservative wing of their party, reopen the government, and raise the debt ceiling.

Rhode Island Democratic Rep. Jim Langevin said he understood emotions are running high as the clock ticks down to the deadline for default Thursday, but said the sign was out of line.

“It is a frustrating time in Washington right now, but I find it really unfortunate that this offensive slur was used to characterize anyone,” he said. “As co-chair of the Bipartisan Disabilities Caucus, I am a firm supporter of the campaign to end the ‘R word.’ It is derogatory and counter to the acceptance and inclusion in society of people with developmental disabilities.”

Langevin’s Republican co-chair, Nebraska Rep. Lee Terry, called on President Obama to condemn the sign.

“As someone who has worked with and fought for those individuals with special needs, Congressman Terry believes this type of language is despicable and has no place in our nation’s discourse,” said Larry Farnsworth, Terry’s spokesperson. “President Obama needs to call out his supporters at the DNC and OFA for condoning this insensitive and hurtful message during their protest.”

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Update: The man holding the sign at the protest, David Roper, tells BuzzFeed he was not affiliated with OFA, nor did OFA know he was going to show the sign he held when he showed up at the group’s protest.

TRICARE, the Pentagon, and Bureaucratic Inertia

At Time, Air Force spouse Jeremy Hilton writes:

In 2010, military families filed a class action lawsuit against the Department of Defense (DoD) and TRICARE (the military’s healthcare insurance program) for their failure to provide medically-appropriate behavioral health treatment for military children impacted by autism.

In July, a federal judge found in favor of those military families. But the DoD, who is represented by the Department of Justice, is expected to continue appealing the case, possibly all the way to the Supreme Court.
...
In January, Obama signed the 2013 defense authorization bill, which contained an amendment creating a one-year pilot program for the treatment of military children with autism, to be implemented in 90 days.

We are at 133 days and counting as of May 16 with no expectation for a program anytime soon.

In a recent conversation with a retired four-star general (speaking about processes in the Pentagon), he stated that “the bureaucrats in the Pentagon have a Ph.D. in log rolling…when they don’t want to do something, it doesn’t get done.”
...
I doubt that politicians realizes how hypocritical their comments sound to middle-class military families who have “children with autism or Down’s syndrome, and other serious disabilities,” who are fighting the Pentagon to give their kids a chance.

Given what Mrs. Obama and Dr. Jill Biden have done through their Joining Forces campaign, military families like mine are really trying hard to give the President the benefit of the doubt, and trying to remain hopeful.

In the end, this is President Obama’s Administration.

The President, Brain Research, and World Autism Awareness Day

At the White House blog, presidential adviser Valerie Jarrett writes of brain research:

Today marks World Autism Awareness Day, and it was filled with events, meetings, and information campaigns here at the White House, across the Obama Administration, and across the country. 

It was fitting that President Obama unveiled a bold new research initiative designed to revolutionize our understanding of the human brain. The BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative will be essential to advancing what we know about the complexities of autism. Originally referenced during the State of the Union, this ambitious new project was launched with approximately $100 million in the President’s Fiscal Year 2014 Budget, and ultimately aims to help researchers find new ways to treat, cure, and even prevent brain disorders, such as Alzheimer’s disease, epilepsy, and autism. 

As President Obama said today: “We’re still unable to cure diseases like Alzheimer’s or autism, or fully reverse the effects of a stroke. And the most powerful computer in the world isn’t nearly as intuitive as the one we’re born with. So there is this enormous mystery waiting to be unlocked, and the BRAIN Initiative will change that by giving scientists the tools they need to get a dynamic picture of the brain in action and better understand how we think and how we learn and how we remember. And that knowledge could be -- will be -- transformative.”

As with Tom Cole's comment, self-advocates might take exception to the characterization of autism as a "disease."

Obama Signs Bill with TRICARE Provision

Previous posts have discussed a measure enabling retired TRICARE enrolees to get coverage of ABA.  Autism Speaks reports:

President Obama has signed bipartisan legislation creating a one-year pilot program expanding ABA care to all military families through TRICARE, the Pentagon's healthcare program, a critical first step in improving services for military families raising children with autism.

"Autism Speaks thanks President Obama for taking this sensible step for military families, along with our Congressional champions Rep. John Larson of Connecticut and Sen. Kirsten Gillibrand of New York," said Peter Bell, Autism Speaks executive vice president for programs and services. "At the same time, we restate our intention to make these medical services permanent. Military families who sacrifice so much deserve access to the benefits they have earned."

The TRICARE provision was included as an amendment to the National Defense Authorization Act voted out of Congress in December. Both the House and Senate had approved a permanent expansion of ABA benefits providing for prescribed levels of care, but the measure was whittled down to a one-year pilot program when the bill was finalized in conference committee.

The Department of Defense (DoD) currently restricts ABA coverage to active duty members through the supplementary ECHO program which limits annual benefits to $36,000, covering just 6 to 11 hours of therapy a week, well below the recommended level of care. Because of specific policy shortfalls, ABA care terminates upon retirement, including services for children of wounded warriors retired due to injuries sustained in combat.

Service members have said they have re-enlisted for additional tours of duty simply to maintain coverage for their children with autism.

The one-year pilot program, which is for all TRICARE eligible beneficiaries with autism, is to start within 90 days. Within 270 days, DoD will then be required to report to Congress on costs, a comparison of the pilot program with ECHO and any recommended legislative remedies. The legislation offers no guidance on coverage limits or parameters of the program.

"Autism Speaks will closely monitor the DoD’s implementation of the pilot program on a variety of fronts, including its coverage of ABA Technicians and BCaBA’s," said Karen Driscoll, Autism Speaks’ associate director for federal government affairs and military relations, and a Marine Corps spouse.

"Development of effective policy is essential," she said. "It is critical that TRICARE work with stakeholders, including military families and subject matter experts, to ensure the final policies regarding coverage and delivery of ABA care are consistent with best practices."

Autism Speaks Priorities

Autism Speaks lists several priorities for President Obama's second term:

 

Autism Speaks and the Debate

From Autism Speaks:

Autism Speaks is preparing for Tuesday's Presidential debate at Hofstra University by organizing advocates to appear at Good Morning America, the Today show and a pre-debate event, and encouraging advocates outside the New York area to make the "1 in 88 Can't Wait" message seen and heard.

Advocates will be outside the Good Morning America and Today show broadcasts holding "1 in 88 Can't Wait" signs. If you do not live in the New York area, here is what you can do to help: 

1.) Take a picture of you, your family or your child holding a poster that says something like, "My 1 in 88 can't wait!", "I'm 1 in 88 with autism & can't wait!", "Put autism in the debates", "We love our 1 in 88 and can't wait for you to put autism in the debates."

Decorate the poster, be creative, have fun. Share your picture with us on your Facebook Page to show your friends what you are doing!

2) Tweet the picture to ABC's Good Morning America for its Monday broadcast and NBC's Today show Tuesday. We will have community members holding signs outside of GMA on Monday (Oct. 15) & outside Today on Tuesday (Oct. 16). CBS This Morning doesn't have an outdoor venue, but we can still send them pictures! Participate from home by sending both the candidates & news shows your pictures.

First, here are suggested Tweets:

"Hey @BarackObama @MittRomney @GMA Our 1 in 88 can't wait. Put #autism in the #debates! #AutismVotes2012"
"Hey @BarackObama @MittRomney @todayshow Our 1 in 88 can't wait. Put #autism in the #debates! #AutismVotes2012"
"Hey @BarackObama @MittRomney @cbsthismorning Our 1 in 88 can't wait. Put #autism in the #debates! #AutismVotes2012"

Then, attach your Twitpic and tweet!

NOTE: If you don't have a Twitter account, create one easily at www.twitter.com

3) Post on the candidates' Facebook pages. Continue to visit the Obama Campaign Facebook page here and the Romney Campaign Facebook page here throughout the weekend. You cannot post directly to their pages, so please post this wherever you can on their Facebook page, even under a seemingly unrelated topic. The goal is for each campaign to see thousands of posts from the autism community:

(President Obama/Governor Romney) - Our 1 in 88 can't wait for leadership and a plan surrounding all the issues the autism community faces today. Please discuss autism in the debate at Hofstra Univeristy & let us know what you will do to help people living with autism today.

Between 3 pm and 11 pm on Tuesday, the day of the debate, Hofstra will operate a Public Area at its Hempstead, Long Island campus where advocates can make their voices heard. Autism Speaks is registered and will be there to speak and build an audience.