Archive | Barack Obama RSS feed for this section

President Obama signs Autism CARES Act into law

12 Aug

The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 has been signed by President Obama, making it law. This will extend and expand on the framework for authorizing appropriations for autism research and for coordinating research efforts in the U.S..

Here is the summary for the bill:

Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 or the Autism CARES Act of 2014 – (Sec. 2) Requires the Secretary of Health and Human Services (HHS) to designate an official to oversee national autism spectrum disorder (ASD) research, services, and support activities. Directs the official to implement such activities taking into account the strategic plan developed by the Interagency Autism Coordinating Committee (the Interagency Committee) and ensure that duplication of activities by federal agencies is minimized.

Extends through FY2019: (1) the developmental disabilities surveillance and research program; (2) the autism education, early detection, and intervention program; and (3) the Interagency Committee.

(Sec. 3) Includes support for regional centers of excellence in ASD and other developmental disabilities epidemiology as a purpose of grants or cooperative agreements.

(Sec. 4) Requires information and education activities to be culturally competent. Allows a lead agency coordinating activities at the state level to include respite care for caregivers. Allows the use of research centers or networks for the provision of training in respite care and for research to determine practices for interventions to improve the health of individuals with ASD.

(Sec. 5) Revises responsibilities of the Interagency Committee concerning:
• inclusion of school- and community-based interventions in the Committee summary of advances,
•monitoring of ASD research and federal services and support activities,
• recommendations to the Director of the National Institutes of Health regarding the strategic plan,
• recommendations regarding the process by which public feedback can be better integrated into ASD decisions,
•strategic plan updates and recommendations to minimize duplication, and
•reports to the President and Congress.

Revises Interagency Committee membership requirements to specify additional federal agencies that might be represented and to modify the non-federal membership.

(Sec. 6) Modifies requirements for reports by the Secretary on ASD activities. Adds a requirement for a report to Congress concerning young adults with ASD and the challenges related to the transition from existing school-based services to those available during adulthood.

(Sec. 7) Authorizes appropriations to carry out the developmental disabilities surveillance and research program, the education, early detection, and intervention program, and the Interagency Committee for FY2015-FY2019.


By Matt Carey
note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

Presidential Proclamation — World Autism Awareness Day, 2014

6 Apr

April is Autism Awareness month and April 2nd was World Autism Awareness day. Below is the Presidential Proclamation about this.

Presidential Proclamation — World Autism Awareness Day, 2014

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Each year, people across the globe take time to recognize the millions of people living on the autism spectrum, including 1 out of every 68 American children. Americans with autism contribute to all aspects of society and are an essential thread in the diverse tapestry of our Nation. On World Autism Awareness Day, we offer our support and respect to all those on the autism spectrum.

Because our whole Nation benefits when Americans with autism succeed, we must ensure our health care and education systems work for them. Thanks to the Affordable Care Act, insurers can no longer deny coverage to people because they have autism, and new plans must cover preventive services — including autism and developmental screenings — at no out-of-pocket cost to parents. My Administration remains committed to eliminating discrimination against students with autism and to giving schools the resources to help them hone unique talents, overcome difficult challenges, and prepare for bright futures.

We must also do more to improve our understanding of the autism spectrum, which is why I was proud to sign legislation that continued critical investments in research, early detection, and support services for children and adults with autism. Last year, I launched the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, a program that aims to revolutionize our understanding of the human mind. By unlocking new knowledge of the brain, we can pave the way for myriad medical breakthroughs, including a greater appreciation for the science of autism. What makes America exceptional are the bonds that hold together the most diverse Nation on earth. Today, let us celebrate our differences — but let us also acknowledge our responsibilities to each other and move forward as one.

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, 2014, 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.

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

BARACK OBAMA


By Matt Carey

Presidential Proclamation — World Autism Awareness Day, 2013

4 Apr

I know I am late with the Autism Day announcements, but I thought it valuable to post some of these now. Here is a proclamation by President Obama on World Autism Awareness day:

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Today, public health officials estimate that 1 in every 88 children in America is growing up on the autism spectrum. It is a reality that affects millions of families every day, from the classroom to the job market. And while our country has made progress in supporting Americans with autism spectrum disorders (ASDs), we are only beginning to understand the factors behind the challenges they face. On World Autism Awareness Day, we recommit to helping individuals on the autism spectrum reach their full potential.

To achieve that goal, we need a health care system that works for children and adults with ASDs. The Affordable Care Act prevents insurers from denying coverage to children on the autism spectrum, and it ensures new health plans must cover autism screenings at no cost to parents. Beginning in 2014, the Act will make it illegal for insurance companies to discriminate against men and women with preexisting conditions, including ASDs. And looking ahead, my Administration is investing in medical research that can help unlock tomorrow’s breakthroughs in autism detection, intervention, and education.

Leveling the playing field for Americans on the autism spectrum also takes commitment in our schools. That is why we are advancing initiatives to help students with ASDs get a good education free from discrimination and undue hardship. And it is why we are making sure that education can lead to meaningful employment by supporting vocational rehabilitation programs and opening higher education to more people on the autism spectrum.

All Americans should have the chance to live full, independent lives and follow their talents wherever they lead. This month, we recognize Americans with ASDs who are walking through doors of opportunity, and we recommit to opening them wider in the years ahead.

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, 2013, 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.

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

BARACK OBAMA


By Matt Carey

NCD Response to the State of the Union Address

18 Feb

The U.S. National Council on Disability (NCD) has issued a response to the State of the Union address presented by President Obama recently. I am presenting it in its entirety below:

In the annual State of the Union address, President Barack Obama addressed several policy areas of importance to the 56 million Americans with disabilities and their families. As the independent federal agency which advises the President and Congress on disability policy, the National Council on Disability (NCD) applauds the significant agenda proposed by the President and recommends the following actions to guarantee full participation and integration in all aspects of society for Americans with disabilities.

The President called for an increase in the minimum wage to $9.00 an hour by stating “in the wealthiest nation on Earth, no one who works full-time should have to live in poverty.”

NCD agrees. In 2010, statistics released by the U.S. Census Bureau revealed that nearly 28 percent of Americans with disabilities aged 18 to 64 live in poverty.

Today, hundreds of thousands of Americans with disabilities earn less than minimum wage under a little-known relic of employment policy that assumed people with disabilities were not capable of meaningful, competitive employment.

As the President said, “America is not a place where chance of birth or circumstance should decide our destiny. And that is why we need to build new ladders of opportunity into the middle class for all who are willing to climb them.”

Twenty three years after the passage of the Americans with Disabilities Act, the time has come for minimum wage to be available to everyone who works, including Americans with disabilities. Over a quarter of a million Americans with disabilities work under the Fair Labor Standards Act 14 (c) program resigning people with disabilities to earning less than minimum wages and the poverty, isolation and segregation that often results.

In our August 2012 Report on Subminimum Wage and Supported Employment, NCD recommended a gradual phase out of the 14 (c) program. The ladders our nation builds to opportunity must be accessible to every American – including those with disabilities. As America works toward increasing minimum wage, implementation of a comprehensive set of supports and targeted investments in integrated employment services to make it possible for people with disabilities to rise to the same heights as other Americans must also be assured.

In addition, the President announced a non-partisan commission to improve voting in America by emphasizing “our most fundamental right as citizens: the right to vote. When any Americans … are denied that right … we are betraying our ideals.” A Fact Sheet on the Voting Commission issued by the White House lists voters with disabilities and “physical barriers” among the issues to be corrected.

NCD appreciates inclusion of the difficulties faced by voters with disabilities as part of the Commission’s work. A Government Accountability Office (GAO) report found as recently as 2008, only 27 percent of polling places were barrier-free. In fact, the Federal Election Commission confirmed that, in violation of state and federal laws, more than 20,000 polling places across the nation are inaccessible, depriving Americans with disabilities of their fundamental right to vote. People with disabilities and senior citizens are particularly disenfranchised by long lines at polling places and by constraints on and, in some places, the discontinuation of early voting.

To address this disparity, NCD has been collecting the experiences of voters with disabilities in the November 2012 General Election from across the nation in coordination with the National Disability Rights Network and EIN SOF Communications. NCD will issue a report on our findings later this year.

NCD urges the Voting Commission to consider the findings of our upcoming report and to include voters with disabilities on their Commission.

The President also stressed the importance of key reforms to realize cost savings in the Medicare program, including the shift from a fee for service payment system to a managed care model designed to pay for performance. NCD understands the importance of shifting to payment models that both manage costs and increase quality for our health care financing infrastructure. However, it is crucial that people with disabilities and seniors retain the ability to have their needs met.

Over the last two years, NCD has conducted a detailed exploration of managed care within Medicaid, issuing comprehensive recommendations on due process safeguards, program design, performance measures and other facets of responsible managed care frameworks that consider the needs of Americans with disabilities without causing adverse consequences on the quality of care we receive. As the Administration considers various measures to enhance health care quality while controlling costs, NCD stands ready to apply this expertise to Medicare reforms.

As President Obama affirmed, “the responsibility of improving this union remains the task of us all.” NCD looks to continuing its role in developing and promoting robust disability policies in close collaboration with the Administration, Congress and the public.

— Jeff Rosen, Chairperson
On behalf of the National Council on Disability


By Matt Carey

President Obama Tells The Arc, Disability Community “I’ve Got Your Back”

20 Feb

Barack Obama, President of the United States, made a surprise visit to a White House Community Leaders Briefing for The Arc.

Here is the press release on the event from The Arc:

Washington, DC – Today, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (I/DD). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”

This surprise appearance by the President of the United States was the highlight of the day for many attendees, along with the opportunity to interact with high level government officials about how they can support people with I/DD to live in the community. Over the course of the day, leaders of chapters of The Arc were briefed on topics ranging from Medicaid to education to community living and employment for people with I/DD. Many of the speakers, including President Obama, referenced the impact advocates made during budget negotiations to protect Medicaid, and encouraged The Arc and others to continue these efforts.

Another unannounced speaker was White House Chief of Staff Jack Lew, who reiterated the President’s opposition to turning Medicaid into a block grant. He also took questions from the audience, including Barbara Coppens, a member of the national board of directors of The Arc and a self-advocate who took the opportunity to speak about the importance of self-advocacy by people with disabilities.

“I tell other self-advocates – you’ve got to get out there and advocate for yourself because you can’t rely on other people to make change for you,” said Coppens to Chief of Staff Jack Lew.

The day was organized by Kareem Dale, Special Assistant to the President for Disability Policy, who kicked off the agenda by welcoming guests and speaking about employment issues. The Arc heard from Cecilia Muñoz, Director of the White House Domestic Policy Council, who spoke of their commitment to providing services and supports to all in need. Other speakers included Carol Galante, Acting Assistant Secretary – Federal Housing Administration Commissioner, Department of Housing and Urban Development; Cindy Mann, Deputy Administrator, Centers for Medicare and Medicaid Services; Robert Gordon, Executive Associate Director, Office of Management and Budget; and Tom Perez, Assistant Attorney General for Civil Rights, Department of Justice.

Assistant Attorney General Perez discussed the recent Department of Justice settlement with the Commonwealth of Virginia regarding people with I/DD who live in any of its five institutions who could live in the community. He spoke about the bipartisan work going on across the country to implement the Olmstead decision, which states that under the Americans with Disabilities Act (ADA), unnecessarily institutionalizing a person with a disability who, with proper support, is capable of and who wants to live in the community can amount to discrimination.

After a tour of the East Wing of the White House, advocates from The Arc took part in policy breakout sessions that allowed for more detailed discussions on certain issue areas, like community living, family caregiving, education, and Medicaid. The purpose of these briefings was to allow White House and administration officials to engage in a dialogue with leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives. Given the Department of Education’s announcement yesterday to allow ten states waivers from some of the No Child Left Behind law requirements, the education session with Alexa Posny, Assistant Secretary, Office of Special Education and Rehabilitation Services, was incredibly timely, as were meetings with representatives from the Department of Health and Human Services, Department of Justice, Administration on Aging, and the White House Domestic Policy Council.

“This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government allowed leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House. Our network seized on this opportunity, and we left the White House feeling a sense of accomplishment and inspiration for continued advocacy that we will take back to our communities to help grow our movement,” said Peter V. Berns, CEO of The Arc.

Combating Autism Reauthorization Act signed by President Obama

3 Oct

The commitment to autism research by the people of the United States will continue at a high level. The Combating Autism Act has been reauthorized following the passage of the Combating Autism Reauthorization Act by the legislature and President Obama’s signing it into law.

From the White House Blog, this post by Micahel Strautmanis:

Every single day, I am proud and awed to be working for our President. But, some days simply take the cake. Just a few short months ago, I had a couple of those days. On April 1st, President Obama issued the first ever Presidential Proclamation to mark World Autism Awareness Day. Later that month, I had another special moment when Valerie Jarrett and Health and Human Services Secretary Kathleen Sebelius announced that the President and his administration fully supported reauthorization of the Combating Autism Act (CAA). As a father of a child on the autism spectrum, these were extraordinarily meaningful moments to me.

Today, President Obama signed into law the reauthorization of the CAA. I was once again reminded of the honor that it is to be working for a President who gets it — he knows that persons on the autism spectrum are at the heart of this issue.

I find the reauthorization and the entire process quite interesting. There wasn’t the testimony involved in the first Combating Autism Act. While there was certainly a push to get the reauthorization passed, there was a lack support from many organizations, from parent-led groups pushing vaccine causation to self-advocate groups. There doesn’t appear to be much, if any, discussion on vaccines. The CAA in 2006 even had some senators mention vaccines in the congressional record while discussing the passing of the act.

And this is something that intrigues me. I’ve always worried that the CAA was passed, at least in part, based on the perception that perhaps vaccines had a role in autism prevalence. Perhaps some legislative guilt at play. I worried that in 2011, with so much more known about the fact that MMR and thimerosal did not cause an autism epidemic, that congress might let autism research drop to a lower priority. The CAA had to stand on what was accomplished and what the prospects looked like for future research. In many ways, that’s a tough sell. Research doesn’t happen overnight. Even in 5 years. But, congress and the president are supporting the effort into the future. In these economic times, and in an election year, this was not a trivial accomplishment.

The Interagency Autism Coordinating Committee (IACC) will continue into the future. Congress is authorized to appropriate funds into the future.

Obama’s State of the Union Address 2011

26 Jan

Last night Barack Obama gave the annual “State of the Union” address to the American people. I have to admit, I missed it, so I waited for a transcript to come out. I searched for “autism”. I searched for “disability”. I found nothing. I searched for “education”. There was much on education, but nothing about special education. OK, there wasn’t anything on autism, disability or special education in 2010’s speech either. I don’t think it was in 2009 either.

Aside from my own interests, why would I look to these speeches for mention of autism or disability or special education? It’s because I remember the promises made on the campaign trail. I remember the disability plan that the Obama/Biden campaign had then.

I remember the promise to fully fund the federal government’s commitment to special education:

Fully Funding the Individuals with Disabilities Education Act: Barack Obama has been a strong and consistent advocate for fully funding the Individuals with Disabilities Education Act (IDEA). Congress promised to shoulder 40 percent of each state’s “excess cost” of educating children with disabilities, but it has never lived up to this obligation. Currently, the federal government provides less than half of the promised funding (17 percent). Children are being shortchanged, and their parents are forced to fight with cash-strapped school districts to get the free and appropriate education the IDEA promises their children. Fully funding IDEA will provide students with disabilities the public education they have a right to, and school districts will be able to provide services without cutting into their general education budgets. In addition to fully funding IDEA, Barack Obama and Joe Biden will ensure effective implementation and enforcement of the Act.

IDEA is still not fully funded. The economic stimulus funds did give a one-year boost to IDEA funding (not 100% funded, but a lot more than usual). No long term commitment to keep higher levels has come through.

I remember autism being prominent in the plan:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama and Joe Biden believe we need to research treatments and search for the causes of ASD. Obama has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Barack Obama and Joe Biden believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. They will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program – a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

More money has gone into research, especially a big one-year boost from the economic stimulus funds.

The Obama/Biden campaign had an autism specific agenda document, which included an individual to oversee federal autism efforts:

Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts: Barack Obama and Joe Biden will ensure all federal ASD activities occur in an efficient manner that prioritizes both research and supports for families affected by ASD. They will appoint a Federal ASD Coordinator to oversee federal ASD research and federal efforts to improve awareness of ASD and improve the training of medical professionals to identify and treat ASD. By establishing one top-level point person to coordinate ASD efforts in the White House, they will ensure that ASD receives the recognition and priority it deserves in the federal government. The Federal ASD Coordinator will also be tasked with eliminating bureaucratic obstacles that may be delaying implementation of important ASD measures and ensuring that all federal ASD dollars are being spent in a manner that prioritizes results. The Coordinator will work with state task forces on ASD to ensure effective communication and collaboration among federal, state, and local agencies.

I remember these things. I bet a lot of readers here do too. We remember. We vote.

Festivus isn’t over…

3 Jan

…until someone pins me.

Yes, in my listing of seasonal Holidays I neglected Festivus. (Festivus is a holiday invented by the family of one of the writers of the show Seinfeld and made known through that show). Festivus doesn’t end until the someone pins the host in the “feats of strength”. For the moment I’ll abscond with Kev’s rightful position as host of LeftBrainRightBrain and claim that since I have not been pinned, Festivus is still ongoing, I will use this opportunity to express another Festivus tradition: the airing of grievances.

The U.S. federal government was a major disappointment last year. There are many reasons, but today I will focus on the failure (once again) to fulfill their commitment to the Individuals with Disability Education Act (IDEA).

Barack Obama set out this promise during his campaign:

Fully Funding the Individuals with Disabilities Education Act: Barack Obama has been a strong and consistent advocate for fully funding the Individuals with Disabilities Education Act (IDEA). Congress promised to shoulder 40 percent of each state’s “excess cost” of educating children with disabilities, but it has never lived up to this obligation. Currently, the federal government provides less than half of the promised funding (17 percent). Children are being shortchanged, and their parents are forced to fight with cash-strapped school districts to get the free and appropriate education the IDEA promises their children. Fully funding IDEA will provide students with disabilities the public education they have a right to, and school districts will be able to provide services without cutting into their general education budgets. In addition to fully funding IDEA Barack Obama and Joe Biden will ensure effective implementation and enforcement of the Act.

Mr. Obama provided a big boost to IDEA funding, for one year. This was in the form of funding from the economic stimulus plan. Unfortunately, since this was a one-time-only boost, schools were unable to hire additional people or otherwise spend the money in ways that would require long-term investment.

In 35 years, the Federal government has never lived up to their promised contribution to IDEA. Fully funding the federal government’s commitment to special education is long overdue. Yes, it is focused on school age children and doesn’t apply to autistic adults. But, it would make a big difference especially in these tough economic times when districts are faced with big budget problems.

ABC Nightline video on the Judge Rotenberg Center

1 Jul

“No detrimental effects whatsoever”. That’s what Matthew Isreal has to say about the shocks used as aversives. I somehow remain unconvinced. The Judge Rotenberg Center has now come under the scrutiny of the United Nations Special Rapporteur on Torture, who has called on the Obama administration to investigate the center.

Obviously, major electrical shocks can be quite harmful. The most serious physical damage occurs when current passes through organs, like the heart. The JRC device appears to be designed to keep the shocks local. At about 50 seconds into the video they apply an electric shock from one of the JRC’s devices to the Nightline commentator. The shock is applied to her arm, but watch her leg twitch. The effects aren’t exactly localized, are they? That is troublesome to me because we don’t know what is going on internally from the shock.

As to emotional long term side effects, who knows? Seriously, can Dr. Isreal really make the claim of “no detrimental effects whatsoever”? Based on what evidence?

From a previous press release criticizing the JRC

The Judge Rotenberg Center (JRC) in Canton is believed to be the only facility in the country that uses often painful electric shock therapy on disabled children in order to alter behavior. In 2007, the State launched a criminal investigation into an incident where a prank phone call to the school led to the repeated electric shocking of two individuals in the dead of night. One of them, a child, was shocked 29 times, the other was shocked 77 times – sometimes while restrained, causing burns so severe they needed to be treated at a hospital. That investigation is apparently ongoing. In October 2009, the JRC made headlines again when Director Matthew Israel was fined by the Massachusetts Division of Professional Licensure for allowing 14 unlicensed employees at the school to use the title “psychologist.”

http://abcnews.go.com/assets/player/walt2.6/flash/SFP_Walt.swf

Ari Ne’eman’s appointment to the National Council on Disability on hold

28 Mar

In a piece in the New York Times, Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, Amy Harmon discusses Ari Ne’eman and his nomination to the National Council on Disability (NCD).

Mr. Ne’eman’s name was submitted by the White House as part of a group of nominees to the NCD. His nomination is to succeed Robert Davila, whose term has expired. Mr. Ne’eman’s nomination was “ordered to be reported favorably” by the Senate HELP committee on March 10th and sent to the full senate. At present, the nomination is on hold.

Mr. Ne’eman is an autistic adult. If his nomination is confirmed he will be the first autistic to serve on the NCD. He is probably best known his efforts with the Autistic Self Advocacy Network (ASAN), which he founded. ASAN seeks to advance rights of autistcs as reflected in its mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

I will repeat for emphasis: “ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens”.

I find that a position difficult to argue with. Who wouldn’t support access, rights and opportunities for autistics?

This mission statement is fully in line with the purpose of the National Council on Disability, which also promotes rights and opportunity:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

As the parent of an autistic child with very significant disabilities, I can say without reservation we need groups working on improving the rights and access and opportunities of autistics. I believe Mr. Ne’eman and the National Council on Disability would be an excellent match.

In her piece in the Times, Ms. Harmon notes that it is unclear who put the hold on the nomination and what the reason may be. Senate rules allow for a single senator to place a hold, anonymously, for any reason (including just plain obstructionism):

Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.

The Senate has been rather obstructionist in approving many Obama administration appointments, leading the President to employ recess appointments in order to get some of his nominees into jobs. Recess appointments are not the sort of action the President takes lightly, indicating the level of obstructionism in place.

Mr. Ne’eman’s nomination to the NCD generated some discussion within the online autism communities when it was announced. For many people this centered on a question of whether Mr. Ne’eman viewed autism as a disability. Many went so far as to outright claim that he does not see autism as a disability. It would seem clear that Mr. Ne’eman views autism as a disability merely from ASAN’s mission statement which places ASAN as a disability rights organization. For those who remained unsure, Mr. Ne’eman answered this claim quite clearly in a recent piece he wrote for Disabilty Studies Quarterly:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the “cure” approach is not the best way forward for securing people’s quality of life.

Mr. Ne’eman and ASAN have been very active in united efforts by multiple disability groups, such as the recent request for an investigation into the methods employed by the Judge Rotenberg Center (which includes electric shocks and seclusion). One thing lacking in most autism organizations, in my view, is the recognition of our place within a larger disability community. Mr. Ne’eman’s track record of collaborations within this broader community is another sign that he would be an excellent candidate for the NCD.

The Times article concludes with:

But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.

“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”

I agree with Mr. Grossman that this is a great thing to have an autistic nominated to the NCD. As I’ve already pointed out, Mr. Ne’eman’s goals fit those of the NCD quite well.

One notable piece of irony in this story is that the organizations which are critical of Mr. Ne’eman’s nomination have no positions held by autistics. The notable exception is Autism Speaks, which only recently added an adult autistic (John Elder Robinson) to an advisory position. As an additional irony, it is very likely that Mr. Ne’eman’s own advocacy efforts were partly responsible for Autism Speaks giving a position to an adult autistic.

Autism represents a “spectrum” of disabilities. All to often, Mr. Ne’eman’s efforts are framed as being part of some divide between the “high functioning” and “low functioning” ends of the spectrum.

The New York Times piece noted this in this section:

But that viewpoint [neurodiversity], critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.

Neurodiversity certainly does not represent only “high functioning” autistics as its critics would imply. I will not speak for Mr. Ne’eman nor ASAN, but from my own perspective. First, neurodiversity is not limited to autism. Second, within autism, neurodiversity does not apply only to the “high functioning” autistics. In my opinion, the neurodiveristy “viewpoint” is one that stresses rights for all, regardless of the level of “functioning” or presence or lack of any neurological “disorders”.

There are those who try to downplay Mr. Ne’eman’s disability. Keep in mind, we are talking about a man who spent part of his education in a segregated special education program. The fact that he was able to self advocate his way out of this program is to his credit.

For the record, my perspective is that of the parent of a young child with multiple disabilities including very significant challenges due to autism. I would argue that it is precisely children like my own who most need other people to fight to protect their rights. It is from that perspective that I welcome the nomination of Mr. Ne’eman and look forward to his confirmation in the full senate.