Sunday, October 17, 2010

November 6, 2010: Join Autistic Activists Against Autism Speaks

Members of the Washington, DC Metropolitan Area Chapter of the Autistic Self Advocacy Network will be demonstrating against Autism Speaks' Walk for Autism on Saturday November 6th on the National Mall from 8:00am - 1:00pm.

Autistic Activists and their allies across the disability community will carry signs and distribute fliers to walk participants between 14th & 15th Streets and Jefferson & Madison Drives.

The National Mall demonstration is part of a series of demonstrations being held across the United States this autumn. This demonstration is intended to draw walk participants' attention to Autism Speaks' lack of representation for those it claims to serve; its exploitative advertising and fundraising practices which compare having a child with Autism to being in a fatal situation, and the failure of Autism Speaks to spend money in ways that help Autistic people across the life-span.

Please join local Autistic Activists demonstrating against the upcoming Autism Speaks' Walk for Autism Charity Fundraiser on November 6th. All prospective demonstration attendees are encouraged to bring their families and friends, the more people that support us the better!

We will start to gather at 8am between 14th & 15th Streets and Jefferson & Madison Drives. All who plan to attend are encouraged to bring a demonstration sign with them, please make a large sign with a slogan such as: Nothing About Us Without Us!, I am A Person, Not A Puzzle!, or Autism Speaks Does Not Speak For Us!

All those who plan to attend the demonstration, please send an email to so that we know who to expect.

Tuesday, June 22, 2010

Senate Confirms Ari Ne'eman's Appointment to National Council on Disability

It's about time!

Some online articles about the appointment:

Senate Confirms Controversial Autism Self-Advocate To National Disability Council
By Michelle Diament June 22, 2010

After months of delay, the Senate unanimously confirmed Ari Ne’eman on Tuesday to become the first person with autism to serve on the National Council on Disability.

In December President Barack Obama nominated eight new members to the National Council on Disability, which makes recommendations to the president and Congress on disability issues. Early this year, all of the nominations were confirmed except that of Ne’eman, who has autism and is the founder of the Autistic Self-Advocacy Network.

The reason: one or more members of the Senate placed an anonymous hold on the nomination, preventing the full Senate from considering it.

Speculation swirled about the reason for the hold, with some suggesting that Ne’eman’s sometimes divisive views on autism could have been behind the delay. In particular, Ne’eman’s belief that autism should not be cured, but instead should be accepted and accommodated has drawn ire from parents of some individuals who are more adversely affected by the disorder.

As secretively as the hold was placed, however, it was lifted Tuesday morning when Senators voted unanimously to confirm the post along with at least 63 other nominations.“I’m very pleased to have been confirmed by the U.S. Senate and I look forward to taking my oath as a member of the National Council on Disability and to get down to work,” Ne’eman told Disability Scoop.

The confirmations come after news earlier this week that Sen. Claire McCaskill, D-Mo., secured the votes to change the Senate rules to bar holds from being placed anonymously.


Another post on Kev Leitch's blog:

Friday, February 19, 2010


From Doris Ray (ECNV)



In the next two days, the Virginia General Assembly’s money committees will make final decisions on the state budget for FY’2011-2012. In December, outgoing Virginia Governor Timothy M. Kaine presented the General Assembly with a proposed state budget for the next two years. It contained significant cuts to Virginia’s Medicaid Home and Community-Based Waivers Program, including a yearlong freeze on admissions to 5 of the 7 waivers. It also included an 8% cut in the Department of Rehabilitative Services (DRS) Personal Assistance Services (PAS) Program.

Additionally, Medicaid waiver provider reimbursements, including the salaries of personal assistants, respite workers, and companions would be cut by 5%.

As a result of YOUR ADVOCACY, state legislators were considering restoring some of these proposed cuts and offered their own budget amendments to do that.

Yesterday, Governor Robert F. McDonnell presented state legislators with a list of additional budget cuts that he would like the General Assembly to adopt. These proposed budget reductions would significantly cut, and in some cases, eliminate, services vital to the independence, self-sufficiency, and community integration of Virginians with disabilities! He said that these cuts are necessary to balance the state budget, but he also said that he would not entertain raising taxes or doing away with the personal property (car) tax relief program to raise revenues to prevent deep budget cuts.

Governor McDonnell’s recommendations for additional budget cuts include ---

· Elimination of consumer-directed personal assistance, respite and companion services from Virginia’s Medicaid Home and Community-Based (HCBS) Waivers. (A new cut proposed by Governor McDonnell, it is expected to reduce the budget by $62.9 million ) Individuals and families would no longer be able to hire and fire their own attendants. Instead, they would either have to use home health agencies, which are notoriously unreliable, or be forced into nursing homes or other institutions.

· Reduction of the financial eligibility threshold for Medicaid long term care services (both waivers and institutional placement) from 300% of the monthly Supplemental Security Income (SSI) check to 250% of SSI. Those with higher social security/retirement checks, for example, or those attempting to return to work, but who rely on waivers in order to afford personal assistance, would have their services curtailed. This budget recommendation notes that those in institutions will not be in jeopardy because they can simply spend-down in order to continue to receive Medicaid.

· Cuts of 25% in the Virginia Department of Rehabilitative Services (DRS) Personal Assistance Services (PAS) Program for FY 2011 and 50% in FY 2012. DRS PAS helps those not eligible for Medicaid waivers. A significant number of people would lose services, have to quit jobs, and could be forced into institutions.· Additional reductions in state funding (beyond the 10% cut proposed in Governor Kaine’s budget) for adult in-home chore and companion services provided by local government departments of social services. These services provide an alternative for those needing help with activities of daily living, e.g., bathing, dressing and meal preparation, and who are not eligible for Medicaid waiver or DRS PAS services. The bad economy may force local governments to cut these services or impose waiting lists, especially with significant reductions in state funding.

· Elimination of the Department of the Blind and Vision Impaired, the Department for the Deaf and Hard of Hearing, and the Virginia Board for People with Disabilities. This recommendation was advanced without consultation with the consumers who will have their services impacted. Additionally, the DRS budget would be reduced by 5%.

These are only a few of the myriad of cuts in health and human services proposed by the McDonnell Administration.In the next two days, the members of the Senate Finance and House Appropriations Committees will consider all of the recommendations regarding the biennium budget and issue their final recommendations on Sunday, February 21.


If YOU, or someone you care about, receives Medicaid waiver consumer-directed personal assistance, respite, or companion services, tell legislators how important these services are to YOU! Remind them that it cost far less to provide Medicaid home and community-based waiver services. In fact, data that Virginia’s Department of Medical Assistance Services (DMAS) provides to the federal government demonstrates that it costs Virginia three times more to keep people in nursing homes and other institutions rather than providing services in one’s own home.

Ask them to reject Governor McDonnell’s proposed cuts because they would force people with disabilities back into nursing homes and other institutions, costing the state more in Medicaid expenditures and in lost human potential! Tell them to restore funding to Medicaid waivers, DRS PAS, and adult in-home and companion services. Tell them it’s a good economic investment for the people served and for the personal assistants who consumers hire and employ. Tell them to restore cuts in attendant salaries also! Senate Finance and House Appropriations members are making their decisions in the next two days!


Senator Charles Colgan, Chair of the Senate Finance Committee, 804-698-7529

Senator Edward Houck, Chair of the Senate Finance Health and Human Resources Subcommittee, 804-698-7517

Senator Janet Howell (D-Fx), Member Senate Finance Committee 804-698-7532

Senator Mary Margaret Whipple (D-ARL/Fx), Member Senate Finance Committee 804-698-7531

Senator Richard Saslaw (D-Fx), Member Senate Finance Committee and Senate Majority Leader 804-698-7535

Delegate Lacey Putney, Chair of the House Appropriations Committee, 804-698-1019

Delegate Harvey Morgan, Chair of the House Appropriations Health and Human Resources Subcommittee, 804-698-1098

Delegate Robert Brink (D-ARL), Member House Appropriations Committee 804-698-1048

Delegate Joe T. May (R-LOU), Member House Appropriations Committee 804-698-1033

PLEASE ALSO CONTACT GOVERNOR MCDONNELL – Ask the governor to withdraw his recommendations to eliminate consumer-directed services in the Medicaid waivers. Remind him that Medicaid waiver services are more cost-effective than institutional placements and a good investment for Virginia. Let him know how important it is for consumers to be able to hire and supervise their own caregivers because it results in better quality assurance than using a home health agency. If you use DRS PAS services, let Governor McDonnell know how important those services are for you, and if DRS PAS services help you to stay employed and continue to pay taxes, tell him that!


Governor Robert McDonnell


Additional committee members and phone numbers:

Members of the House Appropriations Health and Human Resources Subcommittee
Delegate Harvey Morgan (Chair) -- (804) 698-1098
Delegate Riley E. Ingram--(804) 698-1062
Delegate R. Steven Landes-- (804) 698-1025
Delegate S. Chris Jones -- (804) 698-1076
Delegate John O'Bannon-- (804) 698-1073
Delegate Robert Brink--(804) 698-1048
Delegate Onzlee Ware-- (804) 698-1011
Delegate Rosalyn Dance-- (804) 698-1063

Members of the Senate Finance Health and Human Resources Subcommittee
Senator Edd Houck (Chairman)-- (804) 698-7517
Senator Mary Margaret Whipple--(804) 698-7531
Senator Janet Howell-- (804) 698-7532
Senator William Wampler-- (804) 698-7540
Senator Henry Marsh-- (804) 698-7516
Senator Yvonne Miller-- (804) 698-7505
Senator Emmet Hanger -- (804) 698-7524

Sunday, February 14, 2010

Action Alert: Ask Governor McDonnell to Support Community for All

This urgent action alert is from the ARC of Virginia:

Ask Governor McDonnell to support Community for All


Click on the link here to send an email to the Governor:

Critical budget decisions are being made this week. These decisions will determine the future of community-based services for Virginians with developmental disabilities and their families.

Will the waiting list for community services be reduced or will it continue to grow?

Will the community-based system stay intact or will it be dismantled by budget cuts?

Will Virginia commit to "Community for All" or will we rebuild institutions?

Hundreds of people with developmental disabilities, family members and concerned citizens are anticipated to attend the "mArcH for Rights" in Richmond on Monday morning, calling for for Virginia to eliminate the proposed cuts to community services and stop rebuilding institutions. Please join their voices.

Help us ensure the message of Community for All is heard loud and clear! Our goal is to get 1,000 emails to Governor McDonnell by 12pm on Monday. The 5 minutes you give to take action will impact the lives of thousands. Clicking on the link it will take you to the alert posted on the ARC of Virginia's website. Just scroll down and enter your name, email and address-then click "send message". Talking points are provided for your email to Governor McDonnell, but please take a minute to personalize your message (i.e. "I'm a family member on the waiver waiting list" ," I'm someone who is affected by cuts to community-based services", "I'm a friend/neighbor/collegue", etc.).

This alert is very time sensitive. Please respond as soon as possible and forward this email to everyone you know asking them to join you in the email campaign on behalf of "A Life Like Yours".

If just 10 of your friends and family members respond-it will have a big impact.-Please help The Arc stand up for "A Life Like Yours"-email Governor McDonnell TODAY!

Tuesday, January 12, 2010

ASAN-VA Comments at General Assembly Budget Hearing

January 11, 2010

ASAN Comments at Virginia General Assembly budget hearing.

I’m Paula Durbin-Westby. I am representing the Virginia chapter of the Autistic Self Advocacy Network, the leading autism advocacy organization whose leadership is made up of individuals who are on the autism spectrum.

First, a thank you to all the members of the General Assembly for your efforts to work with Governor Kaine’s budget constraints in this time of economic upheaval.

State policy for 40 years has called for Virginia to shift from institutions to community supports for persons with intellectual and developmental disabilities. Now, Virginia chooses to continue to segregate individuals with these disabilities in state institutions, and seems to be making a choice to reverse those gains which have been made over the past few decades.

In trying to explain institutions to my young son, he asked “Are they like big warehouses where people store stuff?” For many of us, both people with disabilities and our families, the answer is an unfortunate “Yes.”

People with disabilities and our families have repeatedly requested “A Life Like Yours,” and the statistics are there to show that there are cost-effective community-based solutions to institutionalization.

At a time when massive cuts to much-needed services are being proposed, building yet another bricks-and-mortar “solution” is unconscionable. Rather than investing in another “warehouse”, the State of Virginia should divert funding away from what is essentially a big construction project, and toward the human services, community services, medical and support services that people with disabilities, and our families and communities, need. 6000 people waiting for waivers? Respite care slashed from 720 hours per year to one third that amount? Or, less than an hour of respite in a 24-hour day. This sort of decisionmaking will force even more Virginia families into warehousing their loved ones, and into financial and personal disaster.

In addition, Virginia does have responsibilities under the Americans with Disabilities Act and the 1999 Supreme Court decision Olmstead v. L.C.

As Assistant Attorney General for Civil Rights, Tom Perez, said in his recent installation speech: "Segregating people with disabilities in institutions is every bit as bad and illegal as segregating children of color in inferior schools."

In the name of human dignity and civil rights for all people, including people with disabilities, the Autistic Self Advocacy Network calls on Virginia to honor its stated commitment to include Virginians with developmental and intellectual disabilities, in our own homes, our own communities, from which many of us are now excluded, and Virginia society as a whole.

Thank you for taking the time to consider this urgent matter.

Paula C. Durbin-Westby
Board of Directors
Virginia Coordinator
Autistic Self Advocacy Network

Thursday, December 17, 2009

Ari Ne'eman named nominee to National Council on Disability


Office of the Press Secretary


December 16, 2009

President Obama Announces More Key Administration Posts

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts: ·

Marie Collins Johns, Deputy Administrator, Small Business Administration· Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation· Jonathan M. Young, Chair, National Council on Disability· Carol Jean Reynolds, Member, National Council on Disability· Fernando Torres-Gil, Member, National Council on Disability· Chester Alonzo Finn, Member, National Council on Disability· Gary Blumenthal, Member, National Council on Disability· Sara Gelser, Member, National Council on Disability· Ari Ne'eman, Member, National Council on Disability· Dongwoo Joseph "Joe" Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.” President Obama announced today his intent to nominate the following individuals: (I have snipped everyone's bio but Ari's. You can see them all on the link above.) Ari Ne'eman, Nominee for Member, National Council on DisabilityAri Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions. He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services. He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion. Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he studies political science and expects to graduate in May 2010. In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

This makes Ari the youngest presidential appointee in U.S. history.

Wednesday, November 11, 2009

IACC comments, October 23 2009

October 23, 2009

Thank you for permitting me to address this meeting of the Interagency Autism Coordinating Committee.

I am representing the Autistic Self Advocacy Network. I appreciate having had the opportunity to represent ASAN at the recent Scientific Workshop.

The meeting offered many opportunities to make changes as the Strategic Plan is updated for 2010.

Inclusion of an objective to study ethical issues related to “the assessment and communication of genetic, environmental, and clinical risk for autism” was one of the recommendations from Panel 1, the panel I participated in. This objective does not go far enough in that it only addresses assessment and communication of risk. It does not address other ethical issues which we believe to be important. Therefore we strongly urge an objective that would address ethical, legal, and social issues related to all aspects of research, not just the communication of risk, although that is a critical area, given recent developments in identifying prenatal risk factors.

Another area for concern about ethics is early intervention, as interventions are initiated at earlier and earlier ages . Ideas about what early interventions will work are generally based on assumptions of non-autistic people about what “the reasons for autistic behaviors” might be, with little to no input from autistic adults, who can inform and guide research. A concerted effort is being made to increase acquisition of biological materials, such as skin fibroblasts, brains, and other tissue types. There is an ethical concern with collecting biologic samples from young children, who are not capable of giving permission. Potentially, children might not want to contribute biological material, if one of the purposes was for developing a prenatal test aimed at selecting people like themselves out of the gene pool. Although there are many reasons for collection of biological materials, this concern must be addressed. People on the autism spectrum who can communicate,* and people with other disabilities such as Down Syndrome, and their families, have advocated against, and continue to advocate against, such an aim.

In general, recommendations of many of the panelists to include adults in many sections of the Strategic Plan are a step in the right direction.

Although the IACC does not fund research, presumably it has some influence on research priorities, or it would not bother to come up with budget recommendations. Here are some figures from the 2009 Strategic Plan.

Recommended budget for diagnosis and assessment: $133,600,000 For biology and risk factor research, $179,000,000. For causes and prevention, $216,400,000 [almost 28% of the IACC recommended budget]. Treatment and intervention gets $190,100,000.

For “Where Can I Turn For Services?” Where, indeed? Not to the IACC recommended budget, which suggests a grand total of $25,330,000 [3.27%]. If research were really funded at the levels recommended by the IACC, that question becomes even more anxiety-provoking for autistics and our families. We will certainly need to turn to avenues other than the IACC for answers to questions about needed services and supports. Research into causes, biomarkers, prevention, etc. will not help people who are alive today and need evidence-based information about services and supports.

Recent research and initiatives in the United Kingdom can provide a model for services-oriented research and also research into adult issues. The National Health Service has released a study of autistic adults, indicating that prevalence of autism in adults in the UK is one in a hundred, similar to the recent figure here of 1 in 91 children. Interestingly, the NHS report avoids alarmist rhetoric and talk of “an epidemic of autism.” In addition, initiatives such as the “Don’t Write Me Off” employment campaign and “Supporting people with autism through adulthood” can make a real difference in the lives of autistics, especially and young people who are transitioning out of school settings. Sadly, the United States is falling behind on crucial issues related to services and lifespan issues and is failing autistic adults, families and communities.

Currently the Strategic Plan does not address communication differences and disabilities at all. This is a surprising omission, since one of the criteria for an autism diagnosis is communication disability. Although panel 4, on treatments and interventions, mentioned communication as an emerging tool, specific mention of communication research should be incorporated into the 2010 Strategic Plan.

*[Note: The comment "people on the spectrum who can communicate is NOT intended to mean that there are autistic people who cannot communicate. Everyone communicates. It's an error I wish I had caught before I delivered the comments, but I am posting the comments as I delivered them.]

Paula C. Durbin-Westby Board of Directors The Autistic Self Advocacy Network