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.

Wednesday, October 6, 2010

Exclusive: First Autistic Presidential Appointee Speaks Out

First Autistic Presidential Appointee Speaks Out

Excellent article by Steve Silberman of Wired Magazine.

Wednesday, July 14, 2010

ASAN Northern Virginia Chapter meeting

ASAN Northern Virginia will be holding a meeting on July 17.

Here is an announcement and introduction from chapter leader Samantha Bodwell:

I would like to introduce myself, I am Samantha Bodwell. I am happy to be the new Northern Virginia (Washington, DC Area) Chapter Leader and excited to form a great group, I hope to meet lots of interesting people in the process. I am a Northern Virginia native, who was diagnosed on the spectrum over a year ago and have been actively self-advocating since. I have designed a Meetup page in order to get our group up and running.

I look forward to working with our great blogger Paula, who has happily consented to carry on her post.

Our first get together will be on Saturday July 17th, Board Games at Borders, please visit the Meetup page and join the group for further details. Can't wait to meet everyone, see you soon!

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:

Saturday, May 1, 2010

ASAN Comments at IACC Meeting April 30, 2010

I gave these comments at the IACC meeting on April 30, 2010.

April 30, 2010

Thank you for the opportunity to comment. I am Paula Durbin-Westby. I am on the Board of Directors of the Autistic Self Advocacy Network. On behalf of ASAN, I would like to welcome the new members of the Interagency Autism Coordinating Committee.

The Autistic Self Advocacy Network is the leading organization run exclusively by individuals who are on the autism spectrum. We count among our supporters people on the autism spectrum, parents of children, teens and adults on the spectrum, educators, and practicing professionals.

For those new IACC members who are not aware of ASAN’s priorities for the Interagency Autism Coordinating Committee, I am going to list the priorities we have brought to the IACC over the past several years. I do have one item that I am crossing off my list- for now- “Add another autistic individual to the IACC,” one with a point of view emphasizing acceptance of disability and a proactive stance toward services and supports. It is also critical to have people who have a disability to be involved at all levels of policymaking. I am pleased that the IACC has realized the wisdom of adding additional autistic members, and also, as a committee with multiple members on the spectrum, I urge you to adopt strategies that steer away from the language of “burden” and “sadness” and move toward a more positive stance and appropriately objective language.

ASAN’s other priorities are:

Focus funding toward research and practices that will have practical benefit for people on the autism spectrum, our families, friends and communities.

Focus on services for people on the spectrum throughout the lifespan, including adults, underserved populations such as ethnic minorities, women on the spectrum, people who do not use language-based forms of communication, and others.

Redirect research attention toward developing functional communication systems, through developing and making accessible Alternative and Augmentative Communication systems and individualizing communication systems so that each autistic person can have the most accessible means of communicating. As an adjunct to this, make IACC meetings and materials accessible to people with a wide range of disabilities, both physical accommodations, communication differences, intellectual, cognitive, and developmental accommodations.

Focus away from a fixation on “causes” and “cures,” especially when these research focuses, on a variety of genetic/genomic differences, and various biomarkers for autism, have the potential to bring about a eugenics focus, or the selection out of the “gene pool”, of a certain subset of the American population. Keep eugenics out of autism research.

Ethical concerns must be kept foremost and the ethical concerns need not stop with the concern about how to transmit notions of “risk” during pregnancy. Ethical issues should also be addressed when researching medical and pharmaceutical treatments may, behavioral interventions, also often known by a simpler term- education-, that, without careful consideration of unintended consequences, be physically, psychologically, or emotionally harmful to the individuals receiving these treatments. All such research and subsequent practice must be rigorously monitored so that the health and well-being of the individual person on the autism spectrum is the first priority. In some cases, as Ari pointed out during the DSM-5 discussion, treatments and interventions will be contraindicated. In others, respectful and thoughtful strategies can be used. [note: There was a presentation by Susan Swedo of the DSM-5 Working Group earlier in the day]

Those researchers who work in close consultation with, and call on the expertise of, those of us living on the autism spectrum, in areas of development, interpretation, implementation, and evaluation, are the researchers who will be most likely to make advances that will directly impact the lives of autistic people in a positive way.

In closing, I am going to quote from Ari Ne’eman’s testimony at the November 30, 2007 IACC meeting. “We encourage this Committee to take the first steps towards shifting the main buzzword about autism from “cure” to “communication” and ultimately, to moving the dialogue about the autism spectrum to one of acceptance, inclusion and, above all, respect.”

Thank you.

Friday, February 19, 2010


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


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

Virginia: 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!

Wednesday, February 3, 2010

Restraint and Seclusion Bill Markup TOMORROW February 4 2010

Legislation Going to Committee: The Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) is going to be marked up by the House Education and Labor Committee this Thursday, Feb. 4th. More phone calls to representatives are needed immediately to keep the legislation strong.

To view the markup session live, tomorrow Feb. 4, 2010 at 11 am, go to

To contact your legislator and members of the House Education and Labor Committee, go to to look up email addresses and/or phone numbers of legislators.

Call your Congressional representative to co-sponsor H.R. 4247.

To find out the names of your Representative, visit and type in your zip code. The names of your Representatives will be located on the left side of the page under President & Congress.Call the Capitol Switchboard (202) 224-3121 and ask to speak to your representative. You can provide them with your zip code if you do not know his or her name.

Identify yourself as a constituent and the organization that you represent (if any).

If you have a restraint and seclusion story, please give them some of the details so they understand why these bills are so important.

Message: “I am calling to urge (your Representative) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools. HR 4247 is being marked up this Thursday, and your support can help make sure it passes and remains strong. Currently, seventeen states have no protections whatsoever against the use of harmful restraint and seclusion in schools. HR 4247 would create a basic floor of protection and fund teacher training to protect children and keep our schools safe.”

Thank you for your efforts and please keep up the good work! Nothing About Us, Without Us!

Monday, February 1, 2010

Virginia Autism Insurance Bills, Feb. 2, 2010

The VA autism insurance bill/s died in committee yesterday.

The post about the VA autism insurance bills, HB 34 and HB 303 can now be viewed, in their entirety, at:

Saturday, January 16, 2010

Restraint and Seclusion National Call-In Day Thursday January 21

Dear Friends, Advocates and Community Members,

In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT).

This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress -- please distribute this announcement widely.


Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.

• To find out the names of your US Senators and Representative, click here (link to

• Ask for the offices of your US Senators and Representative

• Ask to speak to the person working on education issues

• Identify yourself as a constituent and the organization that you represent (if any)

Message: “ I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”

Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”

Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment.

Please call on January 21, 2010 and tell your friends and family to join you.

If you are interested in doing more, please e-mail us at for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit to learn more.


The Autistic Self Advocacy Network and the APRAIS Coalition

Wednesday, January 13, 2010

Note on Comment Moderation

I have tried to set this blog to not accept comments, but some problem with the settings is keeping me from doing so. Usually I remember to disable comments for a particular post but when I forget, comments come in and I reject them. The reason for rejecting has nothing to do with your comment and everything to do with the fact that I can't keep up with comments and respond due to limits on my time and energy. I do read all the comments I receive, but I don't post them. Perhaps in the future I will but at this point it is something I can't do. - Paula Durbin-Westby

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