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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

NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

20 Sep

The National Council on Disability (NCD) advices the U.S. government on many areas, including civil rights, diversity, employment, housing and education. The NCD has sent a letter to the U.S. Secretary of Education, Arne Duncan, on the subject of “No Child Left Behind” and waivers which allow schools to “shield” some children from the standards of NCLB.

The full letter can be found here.

NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

Following a meeting with U.S. Department of Education Secretary Arne Duncan on Monday, the National Council on Disability (NCD) sent the following letter to the Secretary, outlining policy recommendations for the NCLB waiver process:

September 19, 2011

The Honorable Arne Duncan, Secretary of Education
U.S. Department of Education
400 Maryland Avenue, SW
Washington, DC 20202

Dear Secretary Duncan:

It was a pleasure meeting with you and your senior staff to discuss priorities for students with disabilities within the forthcoming waiver applications for state flexibility under the No Child Left Behind (NCLB) amendments to the Elementary and Secondary Education Act. I’m writing as follow up providing you with a number of policy proposals we are putting forward to ensure that the significant progress that students with disabilities have made under No Child Left Behind is not lost as the Department pursues a waiver process. While the achievement gap between students with and without disabilities is still wide, No Child Left Behind’s disaggregation of data and requirement that schools make Adequate Yearly Progress for each subgroup of students has been a critical driver of reform.

We support the “flexibility for reform” model the Department has put forward in its vision for the waiver process. Having said that, it is imperative that the Department consider the needs of students with disabilities both with regards to what it should and should not provide in flexibility from NCLB’s accountability provisions and what it should require states and school districts to offer in return for the aforementioned flexibility.

With regards to flexibility, we urge the Department to ensure that the following provisions of NCLB are not eliminated or weakened through the waiver process:

Maintain NCLB’s requirement to disaggregate data and ensure a 95% participation rate in state assessments, disaggregated by subgroup population;
Maintain accountability for the Students with Disabilities subgroup and avoid the creation of additional rules allowing states and districts to shield certain populations of students from assessment; and
Maintain NCLB’s teacher quality provisions, particularly the requirement that special education teachers be highly qualified in any content area in which they provide direct instruction;

With regards to reform, we urge the Department to ensure that closing the achievement gap faced by students with disabilities is given sufficient emphasis through incorporating reform provisions which specifically relate to this population. As such, we encourage the Department to consider the following proposals for inclusion in the waiver process:

Eliminate the 2% rule allowing states and school districts to shield 2% of all students from their accountability systems through the use of modified assessments;
Reform the 1% rule to ensure that students who take the alternative assessment must first be assessed for and have access to Augmentative and Alternative Communication (AAC) technology;
Require states applying for waiver flexibility to instruct Local Education Agencies (LEA) to create an additional sub-group for the purposes of disaggregation of data when a sufficient numbers of students within an LEA fall into multiple sub-groups (i.e.: African-American students with disabilities, low-income students with disabilities, etc.);
Require states applying for waiver flexibility to set goals for increasing students with disabilities’ access to the general education classroom (as measured through IDEA State Performance Plan Indicator 5a); and
Require states to increase their use of research-validated educational methodologies, such as Universal Design for Learning and Response to Intervention;

NCLB has been a source of tremendous progress for students with disabilities, and we believe that if properly constructed, the waiver process can drive similar reform. We urge you to ensure that closing the achievement gap for students with disabilities is as great an area of emphasis for the Department as closing the achievement gaps faced by other minority groups. To quote from NCD’s 2008 report The No Child Left Behind Act and the Individuals with Disabilities Act: A Progress Report, “Teachers, administrators, and the community are becoming aware of what students with disabilities are capable of achieving if they are held to high standards and expectations .”

NCD’s Policy and Program Evaluation Committee Chair Ari Ne’eman stands ready to work with you and your staff on these matters. He can be reached at or at our office phone number at 202-272-2004. Thank you for your consideration.


Jonathan M. Young, J.D., Ph.D.
Chairman, National Council on Disability

Letter to Massachusetts DDS Commissioner Urging Elimination of Electric Shock, Other Aversives

19 Jul

The National Council on Disability (NCD) has sent a letter to the Massachusetts Department of Developmental Services Commissioner on electric shocks and other aversives. Massachusetts is the home of the Judge Rotenberg Center which uses electric shocks as a main part of their program.

July 18, 2011

Elin Howe, Commissioner
Department of Developmental Services
500 Harrison Avenue
Boston, Massachusetts 02118


The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other Federal agencies regarding laws, policies, practices, and procedures affecting people with disabilities. NCD strongly opposes the use of aversive treatments and accordingly submits these comments.

NCD has a longstanding history of opposing aversive treatments.[ii] As stated in NCD’s 1995 Report Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children,

While it is possible to understand the desperation of these parents, to share their exasperation with ineffective programs and treatments, and to sympathize with them in their frustration to locate appropriate programs, there are limits to what society can permit in the name of treatment. There are those in our society who would advocate for severe physical punishment or even the mutilation of prisoners convicted of what everyone would agree are heinous crimes. Yet these prisoners are afforded protection under the law from this treatment, even though there are those who would claim that such treatment would “teach them a lesson.” Students with severe behavioral disabilities are not criminals, and yet present law allows them to be subjected to procedures which cannot be used on the most hardened criminals, or, in some cases, even on animals.[iii]

NCD applauds the Massachusetts Department of Developmental Services (DDS) for taking steps toward drastically restricting use of aversive punishment, and we urge complete elimination of such methods. The use of electric shock is not a legitimate method of treatment for any person. Such measures – whose use against non-disabled individuals is already recognized as illegal and immoral – are contrary to the letter and the spirit of the Americans with Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act. We urge the Department of Developmental Services to protect both future students and current ones from the use of contingent electric shock and all other such aversive techniques.

In light of the effect on children and youth and with disabilities nationwide, NCD is gravely concerned by the use of aversive treatments at the Judge Rotenberg Center (JRC), in Canton, Massachusetts — the only known school in the United States to provide such treatment. We are aware that students from an estimated 17 other states and the District of Columbia attend JRC and are therefore potential recipients of such aversive treatments.[iv] As such, NCD views this as a significant issue of national importance.

The treatment being provided at JRC is contrary to federal policy and the findings of mental health research. The 2003 President’s New Freedom Commission on Mental Health stated that restraint will be used only as safety interventions of last resort, not as treatment interventions.[v] Similarly, the US Department of Health and Human Services Substance Abuse (HHS) and Mental Health Administration (SAMHSA) has found that seclusion and restraints are detrimental to the recovery of persons with mental illnesses.[vi]

The practices of JRC are equally contrary to the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) which states in part:

“…The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that… meet minimum standards relating to- provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population… and prohibition of the use of such restraint and seclusion as a punishment or as a substitute for a habilitation program…” (emphasis added).[vii]

The objectionable practices at JRC have not only attracted national attention but have also been scrutinized internationally. According to the United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, “. . . the term torture means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted . . . for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with consent or acquiescence of a public official or other person acting in an official capacity.”[viii]

In April 2010, Disability Rights International (formerly Mental Disability Rights International) issued an urgent appeal to the United Nations Special Rapporteur on Torture concerning the practices at JRC.[ix] Subsequently, in June 2010, the United Nations Special Rapporteur on Torture stated that the practices of the Judge Rotenberg Center in Canton, Massachusetts equate to torture and urged the US government to appeal.[x] The US Department of Justice (DOJ) is now investigating these, and other, allegations.[xi]

The regulations proposed by the Department of Developmental Services (DDS) send a strong message that aversive treatment should not be readily provided, but they must go further. It is critical that the DDS address the concerns identified here and supplement its regulations accordingly.

Thank you for considering our comments and recommendations. NCD stands ready to assist you in ways that our collaboration can best benefit students with disabilities and their families while promoting safe learning environments for all students across America. We are available to discuss these matters at your earliest convenience. Please contact me through NCD’s offices at (202) 272-2004.


Ari Ne’eman
Policy and Program Evaluation Committee Chair
National Council on Disability

[i] With thanks to NCD Council Member Marylyn Howe and NCD Staff Robyn Powell for their invaluable support and assistance in research and drafting.

[ii] National Council on Disability, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves (2002), available at; National Council on Disability, Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children (1995), available at

[iii] Id.

[iv] CNN, New York Education Officials Ban Shock Therapy (2006), available at

[v] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at

[vi] Id.

[vii] 42 U.S.C. § 15009(a)(3)(B)(i-iii) (2000).

[viii] UN General Assembly, Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Article 1(1), 10 December 1984, United Nations, Treaty Series, vol. 1465, p. 85, available at

[ix] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at

[x] ABC News/Nightline, UN Calls Treatment at Mass. School ‘Torture’ (2010), available at

[xi] US Department of Justice, Assistant Attorney General for the Civil Rights Division Thomas E. Perez Speaks at the National Council on Independent Living Annual Conference (2010), available at

National Council on Disability Newsletter, June 2010

28 Jun

I received the Newsletter for the National Council on Disability via email this morning:

Message from the Chairman:

I am truly honored to have been appointed by President Obama as Chairman of the National Council on Disability (NCD). I am delighted to be joined by seven new Members whose nominations were also confirmed by the U.S. Senate this Spring and our continuing Members appointed by President Bush. To learn more about our Members, please visit:

This is the first newsletter of my chairmanship and as such I am actively seeking your input and advice to make NCD more transparent, participatory, and collaborative in implementing the public policy mandate found in NCD’s authorizing statute.

My primary objective is to build a solid foundation for NCD to carry its work into the future and that means being able to coordinate and collaborate effectively across the Federal Government, with state and local governments, and with a variety of stakeholders within the disability community. We are at a critical juncture. There is no longer any mystery about the broad policy objectives for people with disabilities. The uncertainties regard concrete and actionable steps toward implementing our policy objectives. Absent effective leadership and coordination, we will continue to fall short both in improving the lives of people with disabilities and in stabilizing our nation’s fiscal health.

To be an effective agent, NCD must actively engage with the community it was created to serve. Accordingly, NCD will be aggressive, creative, and steadfast in identifying ways to be transparent about its activities and to solicit input from all interested stakeholders. NCD’s engagement will also need to be timely and relevant. NCD will strive to help set the agenda where it can, but our greatest impact will frequently be on issues and topics for which there are windows of opportunity. We need to ensure that NCD is aware of these windows and how best to tailor and present its recommendations so that they make a real difference in advancing disability policy objectives.

I welcome and value your feedback on the Council’s activities, including what you want in future newsletters and communications with the public. The Council is embarking on a new era and we want to reach out to you in this open invitation for suggestions on everything we’re doing. You are our stakeholders and we depend on you to let us know how we can better serve the community. I encourage you to share your thoughts, ideas, and general comments. You can email NCD at There is much work to be done and your feedback is key.



Jonathan Young

In the News

Congressional Testimony

On June 15th, Chairman Young had the privilege of testifying before the Subcommittee on Emergency Communications, Preparedness and Response on “Caring for Special Needs during Disasters: What’s being done for Vulnerable Populations.” His testimony can be found at: The purpose of this hearing was to receive testimony on the actions taken by FEMA, non-profits, and localities to address the needs of vulnerable populations, including people with disabilities, the poor, children, and persons with limited English proficiency, during disasters.

National Summit on Disability Policy 2010

Since Chairman Young’s confirmation he has been immersed in preparation for NCD’s National Summit on Disability Policy, which will take place at the Renaissance Washington, DC Hotel, 999 9th Street, NW, Washington, DC, July 25–28, 2010.

The Summit’s cross-cutting theme of Living, Learning & Earning is designed to launch a national dialogue on disability policies and programs in the 21st century. As the invited guests gather in Washington, DC to celebrate the 20th anniversary of the signing of the ADA, we want to begin substantive discussions about the future of disability policies and programs and promote extensive collaboration at all levels of government and among all stakeholders. The Summit now includes an additional half-day, post-Summit discussion session on July 28, where NCD will reflect on the Summit’s proceedings and entertain additional stakeholder input.

White House Launches Celebration Of 20th Anniversary Of Americans With Disabilities Act

On June 8th Valerie Jarrett, Senior Advisor to President Obama, kicked off the White House’s celebration of the 20th Anniversary of the Americans with Disabilities Act, delivering remarks to over 2,000 people from around the world at the VSA International Festival at the Kennedy Center. Read Ms. Jarrett’s full remarks at

FCC ADA Anniversary Celebration

As part of its continuing effort to develop and implement consumer-focused policies, including disabilities access, the Federal Communications Commission (FCC) will begin its year-long celebration of the 20th Anniversary of the ADA on Monday, July 19, 2010. The event will be held in the afternoon, in the Commission Meeting Room. The event will include the following:

•Launch of the Commission’s Accessibility and Innovation Forum
•Announcement of FCC initiatives concerning disability access
•Technology Expo of emerging communications equipment and services
•Debut of a video documenting first-person testimonials on disability access
•Performances by Gallaudet University students

Additional information about the event will be released at a later date. The celebration is free and the public is encouraged to attend. Pre-registration is encouraged, but not required. To pre-register or request accommodations, please send an E-mail to:, or call (202) 418-2498 voice; (202) 418-1169 TTY.

NCD Vice Chair Fernando Torres-Gil Addresses Aging

On May 27, NCD Vice Chair Fernando Torres-Gil, Ph.D., provided the keynote address at the 2010 Area 1 Agency on Aging’s “Celebration of Seniors” luncheon and awards ceremony in Eureka, California.

Read the entire advance story from the May 25 Eureka Times-Standard at

NCD Board Member Gary Blumenthal Discusses Center Closure

On May 20, NCD Board Member Gary Blumenthal’s guest column on closing a local developmental center appeared in the Waltham, Massachusetts, Daily News Tribune.

Read the entire column about the closure of Fernald Developmental Center at

On May 30, the Boston Globe published a letter to the editor by Mr. Blumenthal that discusses the benefits of community-based settings.

The letter can be found at

Federal Medical Assistance Percentages

On June 7, NCD Chairman Jonathan Young sent a letter to Senate Majority Leader Harry Reid and Senate Minority Leader Mitch McConnell urging swift action in providing a six-month extension of the enhanced Federal Medical Assistance Percentages contained in the Senate-passed American Workers, State, and Business Relief Act of 2010 (H.R. 44213) but omitted from the American Jobs and Closing Tax Loopholes Act passed by the U.S. House of Representatives.

Anniversary of Olmstead v. L.C.

June 22 marked the 11th anniversary of the landmark 1999 U.S. Supreme Court decision in Olmstead v. L.C., in which the Court held that the unjustified institutional isolation of people with disabilities is a form of unlawful discrimination under the ADA.

Since that time, progress has been made. Many individuals have successfully transitioned to community settings, but waiting lists for community services have grown considerably and many individuals who would like to receive community services are not able to obtain them.

NCD believes that continued implementation of Olmstead is of paramount importance to the nation as demographics shift toward older Americans, and is one of the top priorities of the disability community.

CMS Announcement

Our partners at the Centers for Medicare and Medicaid Services (CMS) made a recent announcement that we believe will be of interest to you:

CMS State Medicaid Directors Letter # 10-008 issued May 20, 2010, entitled “Re: Community Living Initiative,” which reminded states of their obligations to implement the Olmstead decision, reported on recent progress made as a part of the Community Living Initiative and highlighted resources and guidance to help states in their compliance efforts.

You can download a PDF of the CMS State Medicaid Directors Letter from

The Affordable Care Act

A blog, entitled “What the Affordable Care Act Means for Americans with Disabilities” by Henry Claypool, Director of Office on Disability, U.S. Department of Health and Human Services, was posted on May 21, 2010, at

To read the entire blog, please go to

ODEP Announces National Disability Employment Awareness Month Theme

On May 13, the U.S. Department of Labor’s Office of Disability Employment Policy unveiled the official theme for October’s National Disability Employment Awareness Month: “Talent Has No Boundaries: Workforce Diversity INCLUDES Workers With Disabilities.” The theme serves to inform the public that workers with disabilities represent a diverse and vibrant talent pool for hire.

To read the full announcement, please go to

FCC and FEMA Announce Workshop on 21st Century Emergency Alerting: Leveraging Multiple Technologies to Bring Alerts and Warnings to the Public

On June 10, the Federal Communications Commission’s Public Safety and Homeland Security Bureau and the Federal Emergency Management Agency’s (FEMA’s) National Continuity Programs held a workshop on 21st Century Emergency Alerting: Leveraging Multiple Technologies to Bring Alerts and Warnings to the Public.

This meeting was important to people with disabilities because emergency warnings still do not adequately reach people with disabilities during disasters. Most disaster warnings broadcast via conventional media avenues only, which may not be accessible to people with hearing or vision disabilities.

For more information, please see the full announcement at

About the National Council on Disability Newsletter

The Newsletter, which is also available on the Council’s website at, brings you the latest issues and news for people with disabilities. To subscribe to the NCD listserv, go to, click on online mailing list archives, select NCD-NEWS-L, then join or leave the list, and finally, complete the short subscription form.

Ari Ne’eman’s previous work with the National Council on Disability

23 Jun

Ari Ne’eman has been appointed as a full member of the National Council on Disability. With that announcement came some criticism of the appointment, including comments on this blog indicating that Mr. Ne’eman’s doesn’t have the experience necessary to serve.

Given that, I thought I would share a couple of things I found on the NCD’s website. I was searching for an announcement of the Senate confirmation of his appointment. What I found was a surprise to me: Mr. Ne’eman has been working with the NCD since 2007 in the Youth Advisory Council.

This recent announcement acknowledges some of Mr. Ne’eman’s work bringing together a coalition of disability organizations:

Advisory Committee Member Achievement

NCD’s Youth Advisory Committee policy workgroup leader, Ari Ne’eman (NJ), received recent accolades for his successful leadership of advocacy work that mobilized the broader disability community on an international scale. In his thank-you note to the 22 disability rights organizations and countless individuals whose combined efforts resulted in withdrawal of an ad campaign depicting people with disabilities in a negative way, Ari noted “this is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world” (

Mr. Ne’eman was a leader of the NCD’s Youth Advisory Council policy workgroup starting in 2007.

With its charter renewed until October 2009, NCD’s YAC met on November 15, 2007, after welcoming seven new members, new officers (Amy Doherty-chair; Carly Fahey -vice chair; Matt Cavedon -Secretary), procedural workgroup leaders (Ari Ne’eman-Policy; Daman Wandke-Outreach and Networking), and mentors (Stephanie Orlando and Miranda Pelikan). The committee reported topics and issues of interest such as aversives and restraints, healthcare accessibility, expanding ways of gathering youth and young adult perspectives, and planning to make a new proposal to NCD about disability history awareness-raising. We welcome aboard in FY2008 Jesutine Breidenbach (MN), Brett Cunningham (OK), Paul Fogle (PA), Eddie Rea (CA), Nicole Schneider (FL), Nathan Turner (OH), and Bryan Ward (DE). YAC meets again on January 17, 2008, at 4:00 p.m. EST. Please e-mail your questions about YAC to Dr. Gerrie Hawkins

Maybe it is time to give Mr. Ne’eman credit for years of service and welcome him to the NCD?

Ari Ne’eman appointed to National Council on Disability

22 Jun

Ari Ne’eman has been appointed to the National Council on Disability. This will make him the first autistic member of the Council. Mr. Ne’eman is the Founding President of the Autistic Self Advocacy Network (ASAN).

I have been checking the Senate Calendar periodically to monitor the status of his nomination, which was on hold. When I found his name was no longer on the calendar, I did a quick google search and round Senate Confirms Controversial Autism Self-Advocate To National Disability Council. Disability Scoop notes that Mr. Ne’eman’s appointment was unanimously approved by the Senate.

Earlier this year, Mr. Ne’eman was appointed to the Interagency Autism Coordinating Committee.

White House Remains Steadfast In Support Of Disability Council Nominee

30 Mar

Disability Scoop has a new article about the nomination of Ari Ne’eman to the National Council on Disability.

Mr. Ne’eman’s appointment has been on hold in the Senate, as noted in a New York Times article and on this blog (and others).

“We are still behind Mr. Ne’eman and hope for a quick confirmation,” a senior White House official told Disability Scoop on Monday.

The appointment has the support of multiple disability advocacy groups. Again, from Disability Scoop:

Nonetheless, more than a dozen disability advocacy groups including the Autism Society of America, Easter Seals, Special Olympics and the American Association of People with Disabilities have expressed support for Ne’eman’s appointment.

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.

Senate Committee approves nominations for National Council on Disability

17 Mar

I received this from Meg Evans of the Autistic Self Advocacy Network (ASAN) on the 12th. Sorry for the delay in posting it. Ari Ne’eman (of ASAN) has been nominated by President Obama to serve on the National Council on Disability. This nomination was approved by a Senate committee and will now go on to the full senate for a final vote.

Nominees for Disability Council, Other Federal Boards Approved by Committee

The following seven nominations for members of the National Council on Disability were approved by committee and will go on to the full senate for vote:

o) Gary Blumenthal, the executive director for the Associated of Developmental Disabilities Providers. Blumenthal previously served as director of the President’s Committee on Mental Retardation under President Clinton.

o) Chester Alonzo Finn, a special assistant with the New York State Office of Mental Retardation and Developmental Disabilities. Finn is blind and developmentally disabled and is president of the national board of Self-Advocates Becoming Empowered, according to the White House.

o) Sara A. Gesler, a state representative in the Oregon State House of Representatives and the youngest woman in the Oregon State Legislature. She founded the non-profit FG Syndrome Family Alliance, which serves families dealing with the rare developmental disability FG Syndrome.

o) Ari Ne’eman, the founding president of the Autistic Self-Advocacy Network. He also serves as vice chairman of the New Jersey Adults with Autism Task Force.

o) Dongwoo Joseph Pak, vice president and loan officer of the Farmers & Merchants Bank and board member of Acacia Adult Day Health Care Services. He has also serviced on the Special Needs Advisory Board for the Orange County Transit Authority and on the California State Rehabilitation Council.

o) Carol Jean Reynolds, the executive director of the Disability Center for Independent Living. She is also a member of the governing board of the National Council on Independent Living. She has faced several mental health and substance abuse issues and has been in recovery for 26 years, according to the White House.

o) Fernando Torres-Gill, the associate dean for academic affairs at the UCLA School of Public Affairs. He was the first assistant secretary for aging in the Department of Health and Human Services, and is a polio survivor, according to the White House.

National Council on Disabilities meeting next Tuesday

15 Jan

I realized a while back that I should be posting the announcements of the NCD (National Council on Disabilities) as well as the IACC announcements I post.

The NCD meeting is being held at the same time as the IACC meeting, for the first day at least. The NCD meeting starts on the 19th (the day of the IACC meeting) but goes on to the 21st. The meeting is being held in Houston, Texas.

Dear Friends and Colleagues:

On behalf of the National Council on Disability (NCD), it is my pleasure to invite you to attend NCD’s next quarterly meeting, which will take place at the JW Marriott Houston, 5150 Westheimer, Houston, TX, beginning at 8:30 a.m. on Tuesday, January 19, 2010, and ending at 11:00 a.m. on Thursday, January 21, 2010. This meeting is open to the public.

NCD’s purpose 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. To carry out this mandate we gather public and stakeholder input, including that received at our public meetings held around the country; review and evaluate federal programs and legislation; and provide the President, Congress, and federal agencies with advice and recommendations. NCD is an independent federal agency, composed of 15 members appointed by the President, by and with the consent of the U.S. Senate.

NCD believes it is vital to hear from communities around the country on what works and what does not for people with disabilities. This meeting will provide another opportunity for that exchange. The agenda will include, among other things, presentations by the Honorable Kathleen Martinez, Assistant Secretary of Labor for Disability Employment Policy and Lex Frieden, Professor of Health Informatics and Professor of Rehabilitation, University of Texas at Houston; presentations on emergency preparedness and youth with disabilities in transition; and two releases of NCD research projects: Workforce Infrastructure in Support of People with Disabilities and The State of Housing in America in the 21st Century: A Disability Perspective.

Specific times are also designated to receive public comment, supported by a toll-free call-in line, and input is encouraged and greatly appreciated. Individuals or organizations can also provide written comments by e-mail, fax, or mail. A public comment session will be held Wednesday, January 20, from 11:30 a.m. until Noon, CST. The toll-free call-in number is (888) 790-6568, and the pass code is “NCD Meeting.” Written comments on disability-related issues of concern or interest can also be emailed to at any time.

You are also invited to join us for a reception at the hotel for meeting participants, audience members, and stakeholders from the disability community on Wednesday, January 20 from noon until 1:30 p.m. Additional details about the meeting will be posted on the NCD Web site at as soon as they become available. You will also find the meeting agenda posted there approximately 10 days before the meeting is scheduled, and written comments for Council consideration can be submitted at any time by writing to

For more information, please contact NCD’s Director of External Affairs, Mark S. Quigley, at or by telephone at 202-272-2004 (V), 202-272-2074 (TTY), and please visit our Web site at At that location you can also sign up to become a member of our extensive listserv, where you will get frequent updates about NCD activities, reports, and news of importance to the disability community nationwide.

We hope you will attend and participate.


John R. Vaughn