Autistic Self Advocacy Network, Northern Virginia

November 6, 2010: Join Autistic Activists against Autism Speaks

2010-10-17T14:28:00.002-04:00

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 asanwashingtondcmetro@yahoo.com so that we know who to expect.

Exclusive: First Autistic Presidential Appointee Speaks Out

2010-10-06T11:24:00.004-04:00

http://www.wired.com/wiredscience/2010/10/exclusive-ari-neeman-qa/all/1

First Autistic Presidential Appointee Speaks Out

Excellent article by Steve Silberman of Wired Magazine.

ASAN Northern Virginia Chapter meeting

2010-07-14T11:11:00.003-04:00

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.

http://www.meetup.com/asanwashingtondcmetro/

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!

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

2010-06-22T19:41:00.003-04:00

It's about time!

Some online articles about the appointment:

http://www.disabilityscoop.com/2010/06/22/neeman-confirmation/9133/

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:

http://leftbrainrightbrain.co.uk/2010/06/ari-neeman-appointed-to-national-council-on-disability/

ASAN Comments at IACC Meeting April 30, 2010

2010-05-01T12:17:00.003-04:00

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.

URGENT—ACT TO STOP DEEP CUTS IN DISABILITY SERVICES—CONTACT LEGISLATORS TODAY!

2010-02-19T09:41:00.002-05:00

February 19, 2010

From Doris Ray (ECNV)

URGENT—ACT TO STOP DEEP CUTS IN DISABILITY SERVICES—CONTACT LEGISLATORS TODAY!

YOU MUST ACT TODAY!! –

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.

YOU MUST ACT NOW TO PREVENT DEVASTATING CUTS to PROGRAMS AND SERVICES THAT ARE VITAL TO VIRGINIANS WITH DISABILITIES!!

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!

PLEASE ACT NOW BY CONTACTING THE FOLLOWING LEGISLATORS BY EMAIL OR BY PHONE --

Senator Charles Colgan, Chair of the Senate Finance Committee
district29@senate.virginia.gov, 804-698-7529

Senator Edward Houck, Chair of the Senate Finance Health and Human Resources Subcommittee
district17@senate.virginia.gov, 804-698-7517

Senator Janet Howell (D-Fx), Member Senate Finance Committee
district32@senate.virginia.gov 804-698-7532

Senator Mary Margaret Whipple (D-ARL/Fx), Member Senate Finance Committee
district31@senate.virginia.gov 804-698-7531

Senator Richard Saslaw (D-Fx), Member Senate Finance Committee and Senate Majority Leader
District35@senate.virginia.gov 804-698-7535

Delegate Lacey Putney, Chair of the House Appropriations Committee
DelLPutney@house.virginia.gov, 804-698-1019

Delegate Harvey Morgan, Chair of the House Appropriations Health and Human Resources Subcommittee
DelHMorgan@house.virginia.gov, 804-698-1098

Delegate Robert Brink (D-ARL), Member House Appropriations Committee
DelRBrink@house.virginia.gov 804-698-1048

Delegate Joe T. May (R-LOU), Member House Appropriations Committee
DelJMay@house.virginia.gov 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!

HERE’S HOW TO CONTACT GOVERNOR MCDONNELL --

Governor Robert McDonnell

www.governor.virginia.gov/TheAdministration/contactGovernor.cfm
804-786-2211

THANKS FOR TAKING TIME TO CONTACT THE GOVERNOR AND OUR LEGISLATORS!!

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

Virginia: Ask Governor McDonnell to Support Community for All

2010-02-14T00:01:00.002-05:00

This urgent action alert is from the ARC of Virginia:

Ask Governor McDonnell to support Community for All

HELP GET 1,000 EMAILS TO GOVERNOR MCDONNELL BY MONDAY!

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

http://capwiz.com/arcofva/issues/alert/?alertid=14685101

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!

Restraint and Seclusion Bill Markup TOMORROW February 4 2010

2010-02-03T10:01:00.001-05:00

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 http://edlabor.house.gov/markups/2010/02/preventing-harmful-restraint-a.shtml

To contact your legislator and members of the House Education and Labor Committee, go to http://congress.org/ 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 http://www.congress.org/ 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!

Virginia Autism Insurance Bills, Feb. 2, 2010

2010-02-01T11:03:00.004-05:00

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:

http://paulacdurbinwestbyautisticblog.blogspot.com/2010/02/virginia-autism-insurance-bills.html

Restraint and Seclusion National Call-In Day Thursday January 21

2010-01-16T15:58:00.003-05:00

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=104

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.

WHAT YOU CAN DO:

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 http://www.congress.org/)

• 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 info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.

Regards,

The Autistic Self Advocacy Network and the APRAIS Coalition

Note on Comment Moderation

2010-01-13T13:51:00.001-05:00

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

ASAN-VA comments at General Assembly budget hearing

2010-01-12T16:16:00.003-05:00

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

Ari Ne'eman named nominee to National Council on Disability

2009-12-17T10:46:00.003-05:00

http://www.whitehouse.gov/the-press-office/president-obama-announces-more-key-administration-posts-121609

THE WHITE HOUSE

Office of the Press Secretary
_______________________________________________________________________________________FOR IMMEDIATE RELEASE

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.

IACC Comments, November 10, 2009

2009-11-11T10:01:00.002-05:00

November 10, 2009

Thank you for this opportunity to comment on updating the IACC Strategic Plan. I am representing the Autistic Self Advocacy Network.

My comments on October 23 focused on ethical issues, concerns about the appropriateness of early intervention and associated research, permissions for acquisition of biological materials, and the IACC’s recommended budget being skewed severely in favor of research into “causes and prevention” rather than practical and appropriate interventions, such as improvements in educational interventions, services and supports.

I have had an opportunity, through the IACC Scientific Workshop Panel process, to make some language changes and suggestions that should apply throughout the Strategic Plan. Since I was on Panel 1, “When Should I Be Concerned?” I will use that section of the 2009 Strategic Plan as an example of changes ASAN would like to see incorporated throughout the entire 2010 Plan:

Many of these changes reflect either more accurate and useful terminology or more respectful language that does not introduce an undertone of disrespect, fatalism, or excess pathologizing of autism.

Anywhere the term “high risk” is used to characterize the likelihood of siblings also being on the autism spectrum, the language should be changed to just that: “high likelihood” rather than “high risk.”

“Abnormal” should be changed to “atypical,” as we have done for the Panel 1 final document.

Anywhere interventions are mentioned, the use of the qualifier “appropriate” should be inserted, addressing our community’s concerns about “intervention for the sake of intervention,” and especially in the light of the obvious disregard of and dismissal of autistic input into the research process to date.

Rather than “early warning signs,” we strongly suggest “early indicators,” which is more scientifically accurate and does not introduce negative value judgments into identifying indicators of autism or atypical development.

Instead of “symptoms,” “characteristics” and “conditions” are more appropriate, since autism is not a disease process but a neurobiological difference.

The use of the term, and concept of “severity,” is questionable for several reasons. First, “severity” is often contextual, over both time and other things like situation and location. What is being looked at when using the “severity” criterion is how “observable” the autistic characteristic is. Whether or not a characteristic is observable and to what degree does not necessarily correlate with other aspects of the person. Again, the focus needs to be on improving the quality of life and not on reducing autistic traits. For this reason we prefer the term “variability,” which indicates that both abilities and disabilities can be present in the same person, and that abilities and disabilities can change over time, whether permanently, or temporarily, in the presence of other factors, such as external environment. “Variability” refers to variability of autistic traits. Where the concept of “severity” is used it must be tempered with research into autistic strengths and also neutral, but autistic, characteristics.

I have made another language change, from “pathology” to “differences in neurobiology and cognition,” which is more specific and avoids the concept that all autistic differences are pathological. Many of them are not.

I have rewritten the first section of the Strategic Plan, with its three sub-questions, to read:

“When Should I Be Concerned?”
-“What are the Early Indicators of ASD?” (rather than “What are the early warning signs?”)
-“Are there typical characteristics that are part of an ASD diagnosis?” (I left that the same, since you already used “characteristics”, which is the preferred term.)
-How much variation is there in characteristics and pattern of abilities and disabilities (over time and depending on context)?”

In addition, undue focus should not be placed on “losing symptoms” of autism, without qualifying language indicating that the “loss” could be due to learning of skills, and certainly should not indicate, at this early stage in research, that these research subjects have become non-autistic. Especially in the light of reports that many of the subjects still retained co-occurring symptoms often found in autistics, such as OCD, anxiety, ADHD, etc., the public should not be encouraged to think that “loss of autistic symptoms” is “loss of autism.” I have changed the sentence in Panel 1’s draft to: “Finally, evidence is emerging that some children ‘lose’ explicit characteristics of ASD although it is not clear whether that loss of autistic characteristics is permanent throughout the lifespan, or whether it reflects “learning skills” rather than “losing characteristics.”

I have reformulated one of the Research Opportunities to: “Inclusion of bioethical and other ethical considerations into the diagnosis and screening process, including but not limited to consideration of the implications of genetic testing and detection of maternal antibodies. Maternal antibodies is an emerging area of concern for us which is reflected nowhere in the current Plan or suggested revisions.

NIMH and other grant-making institutions should not fund research that uses or promotes the use of restraints, aversives, and seclusion. There is a growing movement in society away from the use of these draconian measures, reflected in current legislative efforts to ban their use. Restraints, aversives and seclusion are used disproportionately against people with disabilities, including autism and other developmental, intellectual, and behavioral disabilities. In no case should researchers applying for grants to study restraints and aversives, either to further their use or to legitimize that use, be allowed access to federal funds, including funds from private/federal partnerships. Research that promotes restraint reduction and elimination should be funded as a high priority in order to keep autistic and people with other disabilities safe.

Research into communication differences must be given higher priority than it was given in the 2009 Strategic Plan. A mere mention of Picture Exchange Communication Systems is not enough, given that PECS does not work for everyone on the spectrum, nor does it address the needs of people who need communications technology and/or systems part-time, as a supplement to speech and/or writing, or the need for systems that are flexible enough to accommodate a wide variety of changing communication needs. It also does not necessarily address the needs of people who use non-language-based communication and/or non-symbol-based systems. Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.

Finally, in order to accomplish the goal of achieving the best possible outcome for all people on the autism spectrum, autistic adults should be consulted and should participate in all levels and tasks of research on autism. Autistic adults with a perspective that focuses away from questionable cures and “elimination” of autism should be given a seat on the Interagency Autism Coordinating Committee. Nothing About Us Without Us.

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

IACC Comments, October 23, 2009

2009-11-11T09:46:00.007-05:00

October 23, 2009

http://www.youtube.com/watch?v=IMg0SwYOthw

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,* (see below) 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.]

*[I explained more carefully what I intended to say, in my November 10, 2009 IACC testimony:

Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.]

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

Washington DC: ASAN and Allies Protest Autism Speaks, October 31 2009

2009-10-20T23:33:00.007-04:00

ASAN and Allies Protest Autism Speaks in Washington, D. C. on October 31, 2009

Join The Autistic Self Advocacy Network and allies as we protest Autism Speaks at their “Walk for Autism” on Saturday, October 31 at the National Mall in Washington DC.

Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against autistic people as a fundraising tool does real damage to people with disabilities and to the cause of disability rights.

We protest the agenda of Autism Speaks and the organizations that have merged into it, including Cure Autism Now and the National Alliance for Autism Research. Comments by co-founder Suzanne Wright include a call to “eradicate autism for the sake of future generations,” ignoring autistics who are here now and our families and communities. Although Autism Speaks is capable of addressing the very real needs of autistic children and adults, and our families and communities, it chooses not to.

An analysis of Autism Speaks 2008 financial report reveals that only 4% of Autism Speaks’ total funding is spent on family services. 65% is spent on research in areas that focus on “curing” autism. Another 28% is spent on “awareness” and fundraising. The “awareness” component does almost nothing to educate people about autism itself and is mostly geared toward raising funds for “curing” autism. Pages on Autism Speaks’ website support James Watson, who was dismissed from Cold Spring Harbor Laboratory after making grossly racist remarks, and Autism Speaks has funded Dr. Joseph Buxbaum, who asserted that a prenatal test would soon be available, indicating what sort of “cure” might be expected.

The literature in the “Participant Guide” that is used specifically for fundraising for the Autism Speaks “Walk for Autism” walks includes such language as “shocking,” “terrifying,” and the coupling of cancer and AIDS statistics with autism statistics. This rhetoric is offensive and misleading, adding to the stigma autistics and other people with disabilities must face from society.

Autism Speaks' recent PSA, titled “I Am Autism,” presents autistic individuals as kidnap victims, burdens, and inhuman. In the video, autism is presented as a soul-stealing entity that ruins marriages, causes bankruptcy, triggers embarrassment, and erodes morality.

This latest example of using fear, pity and stigma to raise money is in line with Autism Speaks past fundraising videos, which have presented being autistic as akin to being in a fatal car accident, being struck by lightning and other situations resulting in death. The walks are held in order to fund a mega-million operation (over $22 million this year raised from “Autism Walks” alone), which includes annual salaries that go as high as $600,000 a year for top executives. All the efforts in Washington DC have raised almost enough to pay the salary of one top-level executive in the organization: $461,918.

Autism Speaks does not give any consideration to the damage its alarmist rhetoric causes to autistic people and our families and friends. Although claiming to “speak” for autistics, autistic self-advocates are not represented at any level in the organization.

Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

We will carry out our protest at the Old Folklife Festival Site, between Constitution Avenue and Madison Drive, in between 14th and 15th Streets. We will assemble there between 8 a.m. and 8:30 a.m. The closest Metro stations to the protest site are Smithsonian and Federal Triangle.

Please RSVP to the address below so we will know how many people are coming. Metro transportation information is below the ASAN addresses.

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

pdurbinwestby@gmail.com

http://www.autisticadvocacy.org/

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Metro accessibility information:

http://www.wmata.com/accessibility/metrorail.cfm

http://www.wmata.com/rail/maps/find_station.cfm#c30

ASAN protests Autism Speaks in Boston, October 18

2009-10-15T10:38:00.001-04:00

In light of Autism Speaks' draining funds from local communities, lacking representation of autistic people in leadership positions, and repeatedly using inaccurate and stigmatizing language, the New England chapter of the Autistic Self Advocacy Network (ASAN) is planning to protest the Autism Speaks walk in East Boston MA on Sunday, Oct. 18, 2009. The walk will take place at Suffolk Downs, 111 Waldemar Ave., East Boston MA 02128. Protesting begins at 8.45am, registration opens 9am, walk starts 10.30am. Over 60 national, international, and local disability rights organizations have signed onto a joint letter issued by ASAN condemning lack of representation, exploitative and unethical practices by Autism Speaks. The letter and accompanying press release are posted on the ASAN website: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61 http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=60 The Boston protest comes on the heels of a successful ASAN protest at an Autism Speaks walk in Columbus OH on Sunday, Oct. 11, following distribution of flyers by ASAN members at a student involvement fair at Ohio State University. Links below: http://asansouthwestohio.blogspot.com/2009/10/autism-speaks-in-columbus-let-them-eat.html http://asancentralohio.blogspot.com/2009/10/autistic-community-protests-autism.html http://www.youtube.com/watch?v=sUBfyfjIccA http://autisticselfadvocacynetwork-ohio.blogspot.com/2009/09/asan-osu-involvement-fair-activism.html ASAN also protested in Portland OR at an Autism Speaks walk on Saturday, Sept. 26. Local TV stations reported on the protest: http://www.youtube.com/watch?v=jYeZVQu5H3A http://www.youtube.com/watch?v=JxIPqE3DYG4 http://www.youtube.com/watch?v=74I5IdzzAPA If you are interested in attending the protest in Boston, please contact asannewengland AT hotmail DOT com.

Press Release: Disability Community Condemns Autism Speaks

2009-10-07T10:49:00.003-04:00

For Immediate Release
Contact: Ari Ne’eman, President
Wednesday, October 7th, 2009
The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org or info@autisticadvocacy.org

Disability Community Condemns Autism Speaks

Over 60 organizations condemn lack of representation, exploitative and unethical practices by autism organization

Washington, DC – More than 60 national, international, and local disability rights organizations have signed onto a letter condemning the organization Autism Speaks for exploiting those it purports to help. The letter (attached) will be released on Wednesday, October 7 by the Autistic Self Advocacy Network (ASAN), the leading advocacy organization run by and for Autistic youth and adults speaking for themselves. The letter’s signatories include the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living, and it calls on Autism Speaks' donors, sponsors, and supporters—including Toys ‘R Us, Home Depot, Fox Sports and Lindt Chocolates—to end their support for the organization. The joint letter highlights a pattern of behavior on the part of Autism Speaks beyond any particular instance, but it was instigated following Autism Speaks’ most recent fundraising video, entitled, “I am Autism”.

The disability community reacted in horror to the “I am Autism” campaign, which presents Autistic people as kidnap victims and burdens on their families and local communities.

ASAN held a protest in Portland, Oregon on September 26 that received widespread local press coverage, including segments on the news broadcasts on two local television stations, KPTV-12 (Fox) and KOIN-6 (CBS). Additional protests are being organized for Sunday, October 11 in Columbus, Ohio, and for Sunday, October 18 in Boston, Massachusetts. ASAN is also organizing a large protest at an Autism Speaks-sponsored concert at Carnegie Hall in New York City on Tuesday, November 17. Singer Bruce Springsteen and comedian Jerry Seinfeld are headlining the concert. See the attached Media Advisory for details of these protests.

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” proclaims the spooky announcer on Autism Speaks’ “I Am Autism” video. Produced by Academy Award-nominated film director Alfonso Cuarón and Grammy award-nominated songwriter/producer Billy Mann, the video premiered at the United Nations World Focus on Autism Conference in front of a collection of dignitaries and First Ladies and was subsequently released online on September 22.

Since then, Autism Speaks has attempted to distance itself from the video, taking it down from its website while continuing to distribute it via YouTube (http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=related).

The joint letter highlights three areas of unethical and exploitative behavior on the part of Autism Speaks:

a) Its damaging and offensive fundraising tactics, which frequently equate being autistic to a fate worse than death

b) The low percentage of money donated to Autism Speaks that goes towards services or support for families and individuals, particularly in light of its high executive salaries

c) The lack of representation of Autistic people themselves in Autism Speaks’ Board of Directors or leadership

“This joint letter sends a clear message to the corporate and philanthropy world that Autism Speaks does not speak for Autistic people or our families,” said Ari Ne’eman, an adult on the autism spectrum and President of ASAN. “The type of fear-mongering and exploitation Autism Speaks engages in hurts Autistic people by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” In addition to relying on arousing fear and pity to raise funds, Autism Speaks’ video repeats frequently referenced claims of higher than average divorce rates among parents of Autistic children. A study conducted in 2008 by Harris Interactive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities.

The video also relies heavily on the idea of rapidly increasing autism rates. Another new study by the British Government’s National Health Service, which was released the same day as the video, found that the autism rate among adults (one percent of the population) is the same as the rate among children. This provides evidence that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child who lives in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” wrote Sarah, an Autistic blogger at the blog Cat in a Dog’s World. She added, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 New York University Child Study Center’s “Ransom Notes” campaign that used fake ransom notes claiming to be from an anthropomorphized disability that had kidnapped a child. After widespread outcry from self-advocates, parents, and professionals and the condemnation of 22 national disability rights organizations, led by ASAN, those ads were withdrawn in just two and half weeks. The Ransom Notes controversy was covered by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post, and other major media outlets. ASAN is working with the cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the Board of Directors of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation, and we are taking action.”

About ASAN

The Autistic Self Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people. ASAN seeks to advance the vision 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 focuses on organizing the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without Autistic people. Instead, it should be to create a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens.

For more information, visit http://www.autisticadvocacy.org/.

"I Am Autism" video: Disability Community Responds to Autism Speaks

2009-10-07T09:42:00.003-04:00

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.
Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.
We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

National and International Organizations:

The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund (DREDF)
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
The Autism National Committee
Little People of America (LPA)
Not Dead Yet
The Bazelon Center for Mental Health Law
The Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2
The Center for Self-Determination
Disability Rights Advocates
Kids As Self-Advocates (KASA)
Service Dog Central
MHONA International
The National Empowerment Center
Disabled Youth Collective (DYP)
The Arc of the United States
The National Coalition of Mental Health Consumer/Survivor Organizations
Feminist Response in Disability Activism (FRIDA)
The ICORS Asperger’s Listserv
ADA Watch/National Coalition on Disability Rights
The Asperger’s Women Association (AWA)

Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland in Scotland, the United Kingdom
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom
The London Autistic Rights Movement (LARM) in the United Kingdom
The Aspergers Network in the United Kingdom

Local, State, and Regional Organizations:

ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana
The Disability Activists Work Group (DAWG) in Oregon
APSE-Oklahoma
North Carolina Disability Action Network
Access Living of Metropolitan Chicago in Chicago, Illinois
Topeka Independent Living Resource Center in Topeka, Kansas
Disabilityworks in Chicago, Illinois
Ardinger Consultants & Associates in Maryland
Statewide Parent Advocacy Network of New Jersey
Wisconsin Family Assistance Center for Education, Training and Support
Aspergers Young Adults of North Alabama (AYANA)
Access to Independence of Cortland County, Cortland, New York
Youth Power, New York
The New York Association on Independent Living
Self-Advocates As Leaders (SAAL) in Oregon
Green County Independent Living center in Oklahoma
The Beyond Compliance Coordinating Committee at Syracuse University in New York

I Am Autism Video: (Autism Speaks Gets It Wrong Again)

2009-09-23T01:05:00.001-04:00

Reminiscent of the failed Ransom Notes campaign, the latest video in the Autism Speaks arsenal uses a disembodied “voice of autism” that uses threat tactics, aimed at parents of autistic children.

“Voice” of autism: The “voice” speaks in a creepy, gloating, clipped tone, accompanied by the type of music reserved for scary movie scenes, saying repeatedly “I will” do (something particularly nasty) to “you,” the parent of a child on the autism spectrum.

The litany of threats listed by the “voice” give an air of criminality to “autism.” Some of the threats include robbery, pain, and “relishing desperation.” “You ignored me… and that was a mistake,” threatens the voice.

“I am autism. I have no interest in right or wrong.” “I know no morality.” How dare Autism Speaks say that we have no interest in right or wrong? Yes, I know the creators of this video would say “It is autism that is speaking, not autistic people.” Think again: You cannot separate autism from the autistic individual; you impute immorality to us by pretending to speak “our” language. It’s offensive and it is damaging to us.

“Voices” of parents: The second half of the film is the “voices” of parents and others who are “fighting back.” A list of people who will fight against “autism” follows. “Parents, grandparents, schoolteachers, pediatricians, friends”, etc. Everyone but anyone on the spectrum.

“We speak the only language that matters,” the voices of the “autism community” assert. The “community” envisioned here is a monolithic community of fighters-against-autism and not the real-life community of parents (including autistic parents), families, and communities, many of whom are disgusted by Autism Speaks’ dehumanizing tactics.

The voices of real autistic people, and of families who do not subscribe to the personification of autism, and therefore their family members, as something sinister and criminal, clearly do not matter to Autism Speaks.

United Nations: Near the end of this section we hear repeated by many voices: “We are the United Nations.” It’s pretty clear that Autism Speaks is trying to gain a foothold in creeping out people in other countries.

The United Nations, by showing this film, violates its own principles in the UN Convention on the Rights of Persons with Disabilities:

“As a change of perceptions is essential to improve the situation of persons with disabilities, ratifying countries are to combat stereotypes and prejudices and promote awareness of the capabilities of persons with disabilities (Article 8).”

Finally, a voice of a parent/autism community member asks: “Autism, are you listening?”

Yes we autistics and our families and friends are. We are listening to myths, negative stereotypes, the co-opting of our very real and human voices, being made, ironically enough, to say things that we would not say, threaten people in ways that we would not threaten them, and participate in our own stigmatization. And we will not rest until this sort of Ransom Notes-esque “autism awareness” campaign is thoroughly discredited.

Tony Attwood Says What He Really Thinks about Cassandra Phenomenon and Affective Deprivation in his April 9, 2009 Video

2009-06-22T08:24:00.003-04:00

http://www.autismhangout.com/news-reports/feature-programs.asp?id2=103

Note: The anti-“Cassandra” campaign has nothing to do with Tony Attwood personally but everything to do with his endorsement of the “Cassandra Phenomenon” (aka “affective deprivation,” “Cassandra Affective Deprivation Disorder,” etc.). We continue to hope that Dr. Attwood will address the situation and disassociate himself from the concept, even given this recent video release.

Approximate locations of the comments addressed here are given for those who do not want to watch the entire video.

In this video, posted on AutismHangout, and titled April 9, 2009, Tony Attwood clearly states:

[minute 7:47 into video] “We have what we call the Cassandra Phenomenon.
In Greek mythology, Cassandra had the gift of prophecy, but the curse that no one would believe her. So what can happen is that, at home, you see these sorts of components, but other people will think ‘You’re mad, what do you look for in a relationship?’, etc.

“Now, what you tend to get is a sense of loneliness. Often, ironically, the partner is an extreme socialite, which was chosen by the person with Asperger’s so that in fact, they could have social guidance: a maternal, caring, compassionate person, who is very good at understanding his point of view, but may not be that he’s good at understanding your point of view.

“So the issue is going to be: loneliness, affection deprivation [minute 8:37 into the video].

“When the person is upset at themselves or upset about something they tend to go inwards and not share their concerns or emotions and may get by with the capacity of affection that I call a “cup,” not a “bucket, and this particular lady may have the capacity of a bucket and she gets a cup. And she feels depressed, very very common with those who are a partner… who have a partner with Asperger syndrome. Now, there are a number of good books in this area, most published by Jessica Kingsley Publishers, at www.jkp.com and then a new book just out, by Maxine Aston, which is a workbook for couples. Now, one of my concerns here is that other people may not believe you and some people you can’t convince it unless you say “Marry him and live with him!”

Continuing at [Minute 10:07]: “And what happens is, you become Aspie. It’s an infectious process, and she may not like the sort of person she’s become…

On May 8, 2009, Attwood posted his form letter on the FAAAS site, as a response to the Autistic Self Advocacy Network’s petition, and as a response to the very many individuals who have written to him over the years.

http://www.faaas.org/doc.php?29,358

Although in that letter, he claims that “Cassandra Affective Deprivation Disorder,” was coined by Maxine Aston and is not an official diagnostic category,” in fact, it’s quibbling.

Attwood himself started using, and still uses, the term “Cassandra Phenomenon” and also feels quite comfortable using “affective deprivation” at the same time that he publicly pretends to distance himself from the whole concept. In addition his unprofessional talk of the partner of a person with AS “becoming Aspie- it’s an infectious process” is both inaccurate and also demeaning. For people on the autism spectrum being compared with “infection,” and an infection that leads one to “not like what has become” one does wonder whether Attwood’s assertion in the form letter that “in all my presentations, I have approached the issues in a very positive way examining strategies to make a successful relationship" is accurate.

ASAN has addressed the inadequacy of the form letter here:

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=43

If Tony Attwood has, within the past two months, stopped believing in and using the terms “Cassandra Phenomenon,” “affective deprivation,” and the metaphor of “infectious process” he should immediately inform the Autistic community, either via another form letter posted to FAAAS, on his website, or directly to Autistic individuals.

ASAN's Response to Dr. Tony Attwood

2009-06-15T22:16:00.002-04:00

The Autistic Self Advocacy Network recently created a petition and a statement to the community regarding the need for Dr. Tony Attwood and Dr. Isabelle Hénault to disassociate themselves from hate groups that use stereotypes and pseudoscience to incite discrimination against Autistic people in family law and relationships. We received a reply from Dr. Attwood consisting only of a form letter, sent to numerous recipients, which wholly failed to address the central issue of his and Dr. Hénault's associations with Maxine Aston and FAAAS and the ongoing harm to Autistics and others with disabilities resulting from these associations. We consider Dr. Attwood's reply grossly inadequate and have set forth a point-by-point response below, with Dr. Attwood's statements in italic formatting.

Dr. Attwood: I would like to state quite clearly that having a diagnosis of autism or Asperger’s syndrome does not render a person automatically incapable of being a good partner and parent. Indeed, many of the people I know with autism and Asperger’s syndrome as clients and friends are exceptionally good parents and partners. Should a separation occur between partners and a Court examine the issue of custody of children and access then in my opinion, any decisions should be made on the basis of the abilities of each parent and not simply assume that a parent with autism or Asperger’s syndrome is incapable of being a good parent.

ASAN: In addition to the possibility that an Autistic person might be assumed to be automatically incapable of being a good partner and parent, which is the most extreme danger posed by false stereotypes of family violence, these stereotypes have given rise to more subtle forms of discrimination in family law. FAAAS has explicitly urged family law courts and social workers to view Autistic partners and parents as more likely than others to be abusive. An article by Sheila Jennings Linehan on the FAAAS website, entitled Representing Cassandra in Matrimonial Law, characterizes the non-Autistic spouse as "a normal individual subjected to prolonged moral distress" who is not believed when she "accurately predicts future harm to her children." Along with Maxine Aston, the article specifically cites you, Dr. Attwood, as authority for such statements. FAAAS member Harriet Simons presents seminars for social workers in which she makes similar claims. Your continued association with FAAAS suggests that you endorse these false claims and, as such, increases the risk that Autistics and others with neurological disabilities will face discrimination within the family law system.

Dr. Attwood: The term “Cassandra Affective Deprivation Disorder” has been coined by Maxine Aston. It is not an official diagnostic category. I do know that stress within a relationship between an adult with Asperger’s syndrome and their partner can lead to the neurotypical partner having signs of a clinical depression. Effective relationship counselling by a counsellor knowledgeable in the area of autism and Asperger’s syndrome can significantly improve the relationship and help alleviate the signs of depression.

ASAN: By failing to acknowledge that stress within a relationship can contribute to depression for either partner, Dr. Attwood—and by your repeated endorsements of Maxine Aston in books and interviews—you are perpetuating the false claim that being in a relationship with an Autistic partner is psychologically harmful to a non-Autistic partner. There is no scientific basis whatsoever for suggesting that depression affects only the non-Autistic partner or that it is caused by affective deprivation related to the Autistic partner's responses. Several recent research studies specifically examining the affective dimensions of empathy and alexithymia found no impairment in the affective responses of Autistic individuals. (Rogers, Dziobek, Hassenstab, Wolf, & Convit, 2007; Berthoz & Hill, 2005; Silani, Bird, Brindley, Singer, Frith, & Frith, 2008.) Rather, cognitive and linguistic differences lead to misunderstandings. Thus, a presumption that the non-Autistic partner suffers from affective deprivation is unwarranted. The Autistic Self Advocacy Network recommends that those who counsel couples with one Autistic partner should adopt a nonjudgmental approach to identifying and constructively addressing misunderstandings that have occurred.

Dr. Attwood: According to my knowledge, there is no research to suggest that people with autism and Asperger’s syndrome are likely to be violent in a relationship to any greater degree than a typical person in the general population. I do know that a significant proportion of the clients that I see in my clinical practice express to me their concern in their ability to manage their temper but we now have programs such as Cognitive Behaviour Therapy to help those with autism and Asperger’s syndrome manage feelings such as anger. Problems with anger management also occur in the ordinary population but the nature of the treatment of difficulties with anger management must include an appreciation of the different experiences and cognitive profile of someone with an Autism Spectrum Disorder.

ASAN: Research studies have established that Autistics are no more likely to commit violent acts or violent crimes than the general population (Murrie, Warren, Kristiansson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Notwithstanding the scientific evidence, however, FAAAS has repeatedly and falsely stereotyped Autistics as likely to be violent and abusive toward family members and others. When interviewed in July 2008 for a Canwest News Service article, Karen Rodman, founder of FAAAS, asserted that Autistics often lose their temper for no reason. In a local news interview with the Cape Cod Times in February 2007, Rodman argued that Autistic students should be put into segregated schools because their presence purportedly could endanger other students. Dr. Attwood, by continuing to associate with FAAAS and by serving on its Professional Advisory Panel, you are in effect endorsing and lending your credibility to these harmful and prejudiced assertions. In this context, your discussion of clients seeking help for anger problems, who clearly are not a representative sample of the Autistic population as a whole, serves only to muddy the waters further.

Dr. Attwood: I have presented workshops for FAAAS for couples where one of the partners has a diagnosis of Asperger’s syndrome and in all my presentations, I have approached the issues in a very positive way examining strategies to make a successful relationship.

ASAN: In light of the clearly documented history of false stereotypes of violence and psychological harm promoted by FAAAS and other groups associated with the pseudoscientific affective deprivation concept, the Autistic Self Advocacy Network suggests that presenting couples workshops in different venues would be far more likely to result in positive and successful relationships. Dr. Attwood, we therefore reiterate our demands that you promptly disassociate yourself from Maxine Aston, FAAAS, and all similar groups and apologize to our community for the harm done by your past associations with them.

ASAN Submits Amicus Brief to the US Supreme Court

2009-06-01T23:04:00.002-04:00

The Autistic Self Advocacy Network, along with several other advocacy groups, has submitted an amicus brief to the United States Supreme Court in the case of Winkelman v. Parma City School District. The lawsuit was brought by the parents of an Autistic child who was not given the opportunity to continue receiving occupational therapy services in an Ohio school after the district had agreed that those services were necessary. The school district prepared an IEP stating only that a further assessment of the need for the services would be completed.

The Supreme Court is seeking to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court's analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.

Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child's IEP.

Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.

The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child's IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.

-- Ari Ne'emanPresidentThe Autistic Self Advocacy Network1660 L Street, NW, Suite 700Washington, DC 20036http://www.autisticadvocacy.org/732.763.5530

Restraint Death Ruled a Homicide: Teacher Now Teaching in Loudoun County, Virginia

2009-05-19T13:39:00.002-04:00

Restraint Death Ruled a Homicide: Teacher Now Teaching in Loudoun County, Virginia

The House Committee on Education and Labor held a full hearing this morning on Examining the Abusive and Deadly Use of Seclusion and Restraint in Schools.

http://edlabor.house.gov/hearings/2009/05/examining-the-abusive-and-dead.shtml

One of the witnesses, Toni Price, testified about the death of Cedric Napoleon, who was a foster child in her care at the time he was killed by improper use of restraint.

According to Price’s testimony, and verified by Gregory D. Kutz, Managing Director, Forensic Audits and Special Investigations U.S. Government Accountability Office Washington, D.C., the death, which occurred in Texas in 2002, was ruled a homicide.

The grand jury did not indict the teacher.

The student is said to have been restrained because “he would not stay seated.”

The teacher now teaches in a public high school in Loudoun County, VA. The teacher is licensed to instruct children with disabilities.

According to Gregory Kutz, The Loudoun County schools were informed about this last Friday, May 15.

It is not known whether VDOE was made aware of the teacher’s homicidal act in Texas at the time of hiring.

Toni Price’s testimony can be found here:

http://edlabor.house.gov/documents/111/pdf/testimony/20090519CedricPriceTestimony.pdf Greg

Kutz’s testimony can be found here:

http://edlabor.house.gov/documents/111/pdf/testimony/20090519GregKutzTestimony.pdf An

An article published at the time of Cedric’s death appears here:

http://www.caica.org/NEWS%20DEATHS%20Cedric.htm

To leave comments at the Committee on Education and Labor's blog, go here:

http://edlabor.house.gov/blog/2009/05/news-of-the-day-gao-schools-re.shtml

NFB Disability Law Symposium Keynote Address by ASAN President Ari Ne'eman

2009-05-08T13:24:00.000-04:00

On Friday, April 17th, 2009, I delivered the following comments to the National Federation of the Blind's Disability Law Symposium. A recording of the speech is available here on mp3 and a link to the rest of the symposium materials can be found at: http://www.nfb.org/nfb/Law_Symposium.asp

The past half-century has seen a great proliferation in new kinds of conversation about rights. Once primarily relevant in the context of criminal justice and property disputes, rights-based discourses have expanded their scope throughout our society. We have civil rights, human rights, women’s rights, disability rights, immigrant rights, GLBT rights, commercial rights, social rights, privacy rights, animal rights, children’s rights, student rights, parental rights and countless more. Though we may not all agree on the extent or even legitimacy of them, it cannot be disputed that we have broadened our global conception of the role for this concept called rights in our social, legal, economic, policy and societal frameworks. And yet, at the same time as we have updated the role of rights-based conversations in our society, we remain with some very obsolete ideas about where rights come from. This holds us back.

We go out to the world and we tell them in so many ways that it is time for our rights to be realized. We talk about inclusion, we talk about integration, we talk about access, but when we are asked why, our answers are typically phrased in the language of either cost-benefit or desperate need. The one turns our civil rights struggle into a conversation on policy technicalities; the other evokes the very charity-oriented model of disability support that we have been trying to escape. Neither type of response brings the understanding and the knowledge necessary to communicate both the nature and the urgency of our priorities because both talk about rights without talking about where they derive. To legitimize our rights, we have to explain where they are from and so show that they do exist in the ways we talk about.

But where do rights derive? That is the question. The enlightenment political philosophy that our country was based on put forward the idea of a social contract, arrived at by individuals in a state of anarchy, determining to place some of their G-d-given natural rights into a central government for the purpose of securing the remaining ones. This theory carries with it much charm – it fits with our nation’s philosophy of government by the people, for the people, it recognizes and respects rights as inalienable, not temporal whims to be overridden by the first tyrant with a passing fancy. Unfortunately, it is anachronistic and also inaccurate. There has never been a state of nature and our modern ideas of rights go far beyond the negative right protections against government intervention that are all this model allows for. Our community would not be the only one left out by such a limited conception of rights, but we certainly would be one of the first and one of the worst served.

What does that leave us? Where do rights come from? The United States Declaration of Independence says that men are “endowed by their creator with certain unalienable rights”. I believe that to be true – for both men and women, it should be noted. And yet, for our purposes, this does not help us very much. Because the very reason we seek a source for rights in the first place is to help us understand what they are. Barring a theocracy tied to a particular holy text, the belief that rights are divinely inspired does not shed much light on their nature.

You, the people here gathered today, represent some of the most important leaders of a movement devoted to securing and advancing recognition of the rights of a segment of the global population that has been denied them, perhaps more extensively and more pervasively than any other. For generations upon generations the very idea that our population was discriminated against, was deprived of rights was not even on the agenda. Disability was – and in so many senses, still is perceived – as a problem that should be solved by charity and whose persistence could be blamed only on the lack of sufficient humanitarian instincts on the part of the public and the as yet too slow progression of medical science. Disability rights were not on the agenda as far as rights crusaders were concerned – that was a province for those who ministered to the poor unfortunates of the world, the sad accidents, the there but for the grace of G-d go I angels who gave of themselves and found meaning in those tragic burdens.

Then things started to change – not so much with the world, though it is starting, slowly and not yet by any means surely, but with ourselves. We began not to conceive of our existences as mistakes, our misfortunes as G-d’s will and our utility limited to being gracious for that which hath been given us. We got activated. We got interested. We got angry. We looked out on the world and found the blame for our misfortune lied not with G-d or with medical defects but with a society that was built up for centuries upon centuries without any thought to the prospect that people like us might live in it. In that moment – and we have each found it at different points in our lives – but in that moment, we saw power abused, we saw injustice – in short, we saw wrongs and so our rights were born. In that moment – that epiphany – the world changed for us, and disability rights were born.

In my own community – that of Autistic adults and youth, a group that has been targeted with an unprecedented wave of fear and pity-mongering as of late by entities that unjustly attempt to speak on our behalf – this paradigm shift is motivated by multiple sources. At one level, the socially constructed nature of at least some of our difficulties is a simple conclusion to reach, as many of our challenges are social in nature. At another level, our community’s outrage at lack of representation in the national conversation about us brought us to the disability rights outlook. This is represented for us in the neurodiversity movement, which seeks to recognize our neurology as legitimate and change the autism conversation from one of cures and eugenics to one of quality of life and equality of opportunity. Our movement for what we desire – independent, understanding, opportunity and respect – is a response to attempts to force on us what we oppose – dependency, isolation, pity and loss of control over our own lives.

The very foundation of our legal system comes from something remarkably similar. Why do we guarantee freedom of speech, freedom of petition, freedom of assembly, much less the right to a speedy and public trial or to not have troops quartered in ones home? It is a direct outgrowth of our experiences with the British crown and it was only once we had that experience with injustice that we could properly understand what justice looked like. A quick look across history will reveal much the same thing. Our national experience with slavery imprinted us with the right to freedom from forced servitude on the basis of race. The gains of the civil rights movement were not just the result of superior organization and a superb moral cause, they were our nation’s recognition – still partial – of the legacy of lynching, segregation and racism. Anti-Semitism was driven from the country club to the conspiracy theory fringe when the knowledge of the Holocaust came into our homes. Gay rights have advanced because of public awareness of brutal hate crimes such as the torture and murder of Matthew Shepard. To quote Harvard’s Alan Dershowitz, rights come from wrongs.

Let us be clear. This does not mean that we are purchasing social goods with our victimhood. There are those who would put it in those terms – the people who claim that we are owed something not because it is objectively just for us to receive it but because of our community having been deprived something else that should justly have been ours. Many aspects of the disability policy framework built in decades past are built on that idea, the retributive model of disability. This is the concept behind much of our Social Security Disability infrastructure. The result of it has, in fact, been a form of inaccessible infrastructure unto itself, with individuals forced to swear, even as many are only just starting their lives, that they are incapable of ever working in meaningful employment in order for them to gain the government support necessary to survive. This system was built on old assumptions of dependency – it was built for the conversation about need, not for the one about rights and about justice. It is one of many examples of the kind of infrastructure we must radically alter if we hope to bring the conversation about disability into the 21st century. Another example can be found in the judicial decisions that necessitated the recently signed into law ADA Amendments Act. For what reason did the disability community have to, eighteen years after the ADA first came into effect, work to pass it once again for a considerable portion of the disability population? It is because the judges that interpreted the narrow definition of disability that the legislation sought to fix saw the ADA as a law about charity – specifically, charity for the most severely impaired – not justice for all those who are being discriminated against.

What does the idea of rights coming from wrongs imply then, if not compensation for having been victimized? It should serve to show us what direction our advocacy should take and, much more importantly, it should show the public reason why the goals our advocacy aspires to realize are important. For too long, our civil rights movement has been one by stealth. Even as we built tremendous political power and created civil rights laws and social welfare programs, we often did it not by making a credible claim that this is the way the world should be, but by playing on the idea that society should show “compassion” and “pity” for the disabled. This was not entirely our fault. We’re dealing with a media and, as a result, a general public that has not even begun to understand the nature and implications of disability rights. But regardless of why we are here, we still have to deal with the results of having won our legal and political victories while bypassing the social ones that should have come first. The consequence is that our movement and all the progress it has brought is still seen, in most circles, as one of charity or worse still as a stopgap until – be it by eugenics, euthanasia or medical cures – disability is no longer a part of the human experience. This is what Dr. tenBroek was referring to when he wrote about our “right to live in the world” and the failure of the broader community to accept that right as of yet.

This knowledge places our struggle for recognition of even our victories on the civil rights front in context. Why, almost twenty years after the ADA, do we still see such extensive discrimination and lack of access in terms of employment and places of public accommodation? Why, ten years after Olmstead, do we still see institutions and nursing homes that are near impossible for our people to escape? Why, after Deaf President Now and many similar such actions are so many disability organizations groups that speak about us, without us? Why after the MDA Labor Day Telethon and Ransom Notes and countless other examples of unethical fundraising and advertising tactics do we still see media campaigns that devalue our very personhood and cast us as less than human?

The answer is because when we come to the public with our demands of rights and speak those rights unto the world with all the passion of that aforementioned epiphany, the world only sees part of the message. They see the demand for rights but not the wrongs from which the rights were born. They look at the individual who uses a wheelchair who cannot enter an inaccessible building or the Autistic student who, like I myself have been, is excluded from his home school and what they see is not an inaccessible infrastructure but needy, pitiful dependents. And they may meet our immediate demands for laws and public programs, as charity is still seen as necessary and good and proper by so many well-meaning souls. However, the enforcement of those laws and the implementation of those programs will never be as urgent or as meaningful a priority to them as it is for the “true” civil rights movements.

To them, this is still very much a conversation about need – not injustice. This is not a petty distinction. To have a conversation about justice is to call for a civil rights movement that all members of the human community should feel a moral obligation to join and support. To have a conversation about mere need is to call only for charity conducted mostly by those who usually do not feel that need themselves and have their own ideas about the manner in which it should be fulfilled.

I am reminded, by way of example, of an experience my group, the Autistic Self Advocacy Network, had when leading a protest against offensive advertisements depicting children with disabilities as kidnap victims posted across New York City. The campaign, called “Ransom Notes”, consisted of faux ransom notes from the disabilities that had taken the normal children that were supposedly once in the bodies of now disabled young people. We mobilized thousands of Autistic people and those with other disabilities, brought support from two dozen national and regional disability rights organizations and also garnered some support from sympathetic segments of the parent and professional community. Finally, after thousands of phone calls and e-mails, our story began to hit the media – with the UPI headline, “Ads anger parents of autistic children.”

Of course the story was accurately reported in other news sources and we did succeed in getting the ads withdrawn, but there is a certain sense of frustration over the lack of agency that is allowed our community. Even when every single one of the organizations doing press outreach and explaining our case to the public were consumer-controlled disability rights organizations, the only available paradigm that the media could place this in was one in which we were only passive onlookers as our parents fought on our behalf. Every disability group and most disability rights activists have similar stories.

And so even as we spend more money and more political will on disability issues than we ever have before, we are limited in what we can achieve because the conversation is not one about justice, it is not one about recognizing wrongs and rectifying the institutions that continue to commit them. It isn’t about putting power in the hands of the people who have been deprived it. It is about charity and dependency and all of those other things that infantilize and marginalize us, controlled by those who speak for us on our behalf and without our permission.

The average member of the public does not know about Buck v. Bell or the tens of thousands of Americans with disabilities or perceived to have disabilities who were involuntarily sterilized as a result of the eugenics movement. They do not know about Willowbrook or the countless Americans with disabilities who have had to live out their whole lives in institutions – much less the many Americans with disabilities who still must suffer this segregation. They don’t know about the Judge Rotenberg Center or school abuse through aversives, restraint and seclusion. The people in charge of our futures do not understand our history. They don’t see ADAPT calling out, “We Will Ride” or “Free Our People”. They don’t see Deaf President Now at Gallaudet. All they see is the Jerry Lewis MDA telethon or the Autism Speaks fear-mongering television advertisements or Jenny McCarthy and Jim Carrey promoting pseudo-scientific claims of pharmaceutical company-government conspiracies to poison their children into autism with vaccines. It isn’t just because the money and the media power is in the hands of those other groups. It’s because the public narrative about disability doesn’t know where to place groups like ASAN and the NFB and a movement like ours. The ideas about dependency run so deep, the charity and victim models are so ingrained, that the response of most reporters and members of the general public to our message is one of cognitive dissonance before pigeonholing our movement into whatever disability narrative is easiest for them to classify us into. Maybe this is why the disability movement has not yet had our Rodney King or Matthew Shepard moment – since the concept of disabled people as suffering is a natural, normal, expected thing in the eyes of the media and the public, suffering brought on from discrimination or abuse is simply placed into the same, “unfortunate but unavoidable” category as all disability-related misfortunes tend to be.

A perfect example of this can be found in the Supreme Court’s Alabama v. Garrett decision, were the court struck down Congress’s attempt to abrogate the sovereign immunity of the states from damages under ADA lawsuits on the grounds that there was insufficient evidence to “identify a pattern of irrational state discrimination in employment against the disabled." To a slim majority of the Justices of the Supreme Court, disability discrimination is not the result of having built infrastructures for only a portion of the population but a perfectly rational act that the equal protection clause cannot be expected to serve as a remedy for. To quote the Court, “the Fourteenth Amendment does not require States to make special accommodations for the disabled, so long as their actions toward such individuals are rational. They could quite hardheadedly–and perhaps hardheartedly–hold to job-qualification requirements which do not make allowance for the disabled. If special accommodations for the disabled are to be required, they have to come from positive law and not through the Equal Protection Clause.” Here, once again, disability rights are not matters of equal protection given to full citizens under the law, they are portrayed as matters of charity that good hearted people engage in.

The good news is that this does show us what our next steps should be. It explains the biggest obstacle for the disability rights movement’s ascension to the next level of rights discourse in America - placing us on par with other minority groups based on race, religion, sexual orientation and similar attributes. That obstacle is the failure to take our message to the public. I’m pleased by the progress that we’re seeing in that direction in respect to the growing Disability History movement, attempting to incorporate the history of people with disabilities and our civil rights struggle into the classroom just as the experiences of other American minority groups has been incorporated. In many ways, finding a way to cement our past into the American national narrative will be the best way to ensure we have a future. We must carry that message forward, but to succeed we need our President and Congressional representatives to join us in making that case to the American people. Furthermore, it is important for us to memorialize and to educate the public about the achievements of men such as Dr. Jacobeus tenBroek as well as other disability leaders like Ed Roberts or Justin Dart not just to pay respect to those who have gone before but to show the world that we do have a history of taking control over our own lives and that there is a real and legitimate civil rights movement of, by and for people with disabilities. To quote Ed Roberts, “the greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.” Showing the world those parts of our past where we have confronted the wrongs that are being committed against us and restored agency to our community is one way for us to take back our voice.

Another thing that we must do is to begin to confront and to confront vigorously those organizations and groups that speak about us, without us. When Jerry Lewis or VOR or Autism Speaks go to the public and claim to represent the needs and perspectives of the disability community with their calls for more pity, more segregation, more eugenics and more distance from our dream of being recognized as equal citizens in this society, they perpetrate upon us an obscenity. This obscenity nevertheless has use in that teaches us about how important to the disability rights movement it is for us to take control of our own message and our own community. We must organize not just around laws but around the public conversation on disability, confronting those corporate donors and political infrastructures that give support to these repressive, fear-mongering groups that challenge our right to live in this world. To quote Dr. tenBroek himself, “there are…large and powerful agencies abroad in the land, considerable in number and vast in influence, which remain hostile to our movement in thought, in speech, and in action. Under the guise of professionalism, [they] would perpetuate colonialism. [Their] philosophy is a throwback to the age of the silent client, before the revolution in welfare and civil rights, which converted the client into an active and vocal partner in the programming and dispensing of services. In…[their]…lofty disregard of the organized blind as the voice of those to be served, [they] betray bureaucratic bias that is…[an]…image of the blind client not as a person to be served but as a defective mechanism to be serviced.” The same could be said about many similar groups that speak about us, without us in many disability communities.

Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activism but from individuals. For the public to understand that the disability message is a civil rights message, they must hear that message from their friends, their family members and their co-workers with disabilities. Beyond this, for us to accomplish that, we must succeed in broadening the base of the disability rights movement to encompass a broader scope of people with disabilities in general. There remain too many people with disabilities who do not yet have the chance to participate in our community. We must broaden our community and give every disabled person access to the disability culture and perspective.

I’d like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds, now you must build the foundation underneath them.” As we talk about how to imprint the American public with the meaning and message of the disability rights movement, we talk about what must be done to build the foundations that will show that our vision is no dream. This is what we must do. This is what we can do. This is what we will do. Thank you for your time and I look forward to working with all of you to bring this hope into reality.

--
Ari Ne'eman
President
The Autistic Self Advocacy Net

Testimony at IACC meeting, May 4 2009

2009-05-08T07:49:00.001-04:00

Paula C. Durbin-Westby

May 4, 2009

[Sentences in square brackets are for clarification purposes and were not spoken.]

Thank you for the opportunity to speak today.

You may now have two people who are interested in summarizing the 120 scientific studies mentioned earlier. [in reference to only 6 IACC members submitting comments on hundreds of scientific studies up for review].

Augmentative and Alternative Communication:

It is gratifying to see that the IACC is addressing the critical issue of Augmentative and Alternative Communication.

Now it is time to allocate funding to AAC research. Including a presentation about AAC is an important but preliminary step.

Since communication difficulties are experienced by many people on the autism spectrum, funding research in this area should be a high priority. Advances in communication technology, and the development of AAC options that are affordable, will have a practical application to the lives of people on the autism spectrum, throughout the entire lifespan.

Because of the extreme disparity between services/quality of life funding and the funding of basic research, funding for AAC should be diverted from the millions of dollars allocated to genetic and treatment research and NOT drawn from the already minimal funding for service-related research.

Community-Based Participatory Research:

I recommend using a community-based participatory research model for AAC and other research. Rather than being “grown-up children” as far as research is concerned, autistic adults must be included as collaborators in research, for both practical and ethical reasons. The community-based participatory research paradigm is one model; others may be developed and utilized. [“grown-up children” in reference to comment made by Susan Swedo about the role of autistic adults in research studies.]

One likely outcome of including people on the autism spectrum as collaborators and co-researchers is that the research will be made more relevant to the lives of people on the autism spectrum, including not only adults but children as well.

Just one example from a current research area is that of eye contact research. It has been recently discovered that autistic children look at mouths more than at eyes. Although this is an exciting new discovery for researchers and others, it is not necessarily news to people on the autism spectrum, who are often aware of the reasons and motivation for our own actions.

In addition, studies have already been undertaken that show that typically-developing children also use multi-modal perception to process their experiences.

It has been suggested that some sort of retraining could be done to direct children to not look at mouths but at eyes. The theory is that by looking at mouths children, and presumably adults who do not make much eye contact, are missing important social cues… and that we don’t make use of our peripheral vision.

While it is critical to understand the underlying mechanisms for human communications and processes, the design and application of scientific theories, especially when young children are involved, should have participation, input, and oversight from people on the autism spectrum.

Researchers should take into consideration the numerous self-reports of people on the autism spectrum about the necessity of looking at people’s mouths in order to compensate for auditory processing difficulties, among other reasons. Including co-researchers who are on the autism spectrum can positively inform research so that time and taxpayer money are not wasted and so that studies involving autistic children as subjects do not cause additional difficulties when children are retrained to look away from mouths and possibly lose a significant visual method of accessing receptive communication. Audio-visual synchronies are important not just because they are early indicators of autism but because they are a critical component in how we make sense of communication inputs.

Language use:

Once again, a chronic or fatal disease model or metaphor is not appropriate for autism. Autism is not fatal like cancer, and, as an autistic person with kidney disease, I can tell you that they are not comparable. The IACC must promote appropriate language to reduce myth-making and stigma. [reference to comments comparing autism to cancer and kidney disease.]

Autistic self-advocate organization as public member:

The time has come for the Interagency Autism Coordinating Committee to include representation from autistic self-advocacy organizations such as the Autistic Self Advocacy Network, which has had a representative at all but one of the IACCC meetings since November 2007. Autistic self-advocacy organizations are an increasingly recognized stakeholder in autism policymaking and should not be purposely excluded from the Committee that makes decisions about federal funding for research. The public law that created the current IACC has been in place since 2006/2007. The newly founded Autism Science Foundation has is represented, if not officially [by Alison Singer, president of that organization] but still no representative from a major autistic self-advocacy organization has been named to the committee. Adding a public member from an autistic self-advocate organization will begin to redress the existing imbalance in parity, and add a much-needed dimension of focus on research and policy that will benefit people on the autism spectrum across our lifespans.

This will enable research into AAC, eye contact, and other areas, to move from the “promising practice” realm to a best-practice reality.

REFERENCES:

1. R000239930- Benefits of Averting Gaze and Cues to Comprehension. Doherty-Sneddon, Gwyneth.

http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/Plain_English_Summaries/knowledge_communication_learning/knowledge/index405.aspx?ComponentId=9673&SourcePageId=11764

2. Read My Lips: Using Multiple Senses in Speech Perception. Rosenblum, Lawrence D. Current Directions in Psychological Science

http://www.eurekalert.org/pub_releases/2009-02/afps-rml021109.php

3. YouTube video on multi-modal processing:

http://www.youtube.com/watch?v=jtsfidRq2tw

Listen to the Real Experts

2009-05-05T22:05:00.001-04:00

Here is a link to an article on ASAN's Public Service Announcement produced with the Dan Marino Foundation.

The article is by columnist Valerie Brew-Parrish.

http://www.suburbanchicagonews.com/heraldnews/lifestyles/parrish/1555581,4_4_JO03_PARRISH_S1.article#Comments_Container

CCA petition on change.org

2009-04-29T17:20:00.001-04:00

http://www.change.org/autisticadvocacy/actions/view/pass_the_community_choice_act_with_comprehensive_health_care_reform

Today is CCA day. Please support cross-disability efforts and sign the petition if you have not already.

The Autistic Community Mourns the Passing of Alyric

2009-04-27T12:03:00.000-04:00

The Autistic Community Mourns the Passing of Alyric, a long-time activist and supporter of autistic rights and neurodiversity. She passed away on April 18, 2009, after a long and courageous battle with cancer. Her blog A Touch of Alyricism will remain intact. With her incisive commentary, Alyric was unwavering in her commitment to defend the rights of autistics to respect, honesty and accuracy in science and reporting, and was unafraid to take a strong stand about issues she believed in. Alyric touched many lives. She was always ready to help advocates with research, support, and encouragement. She was a well-respected advocate who made profoundly important and meaningful contributions to our community. We will miss her vibrant presence. Several bloggers have posted tributes to Alyric; here is one that describes her advocacy efforts in more detail.

End the Hate: Petition to Tony Attwood and Isabelle Hénault

2009-04-21T08:48:00.002-04:00

A petition created by the Autistic Self Advocacy Network is asking clinical psychologists Dr. Tony Attwood and Dr. Isabelle Hénault to stop giving their support to hate groups such as FAAAS and ASPIA that portray Autistics and people with neurological disabilities as violent by nature and abusive toward family members. In promoting the pseudoscientific concept of Cassandra Affective Deprivation Disorder, which is a completely groundless claim that being involved in a relationship with an Autistic person causes depression and other psychological harm, these groups seek to encourage discrimination against Autistic people in family law and relationships. Stereotypes and falsehoods like these can cause people with disabilities to face discrimination in divorce and child custody matters and, in some cases, to be denied their parental rights. Drs. Attwood and Hénault are closely associated with FAAAS through their membership on its Professional Advisory Panel and regular presentations at its conferences, and they recently presented at a conference sponsored by ASPIA.

Please join us in signing this petition to help secure the rights of all people to be treated equally under the law. E-mails can also be sent directly to tony@tonyattwood.com.au for Dr. Attwood and to ihenault@internet.uqam.ca for Dr. Hénault. ASAN President Ari Ne'eman has issued a statement to the community asking for support and signatures on the petition to Dr. Tony Attwood and Dr. Isabelle Hénault. It's time to end the hate!

ASAN Group for Autistic Teens

2009-04-20T08:46:00.000-04:00

The Autistic Self Advocacy Network has created a new online group for autistic teenagers and would like to invite interested people to participate. More details below:

A new yahoo group has been created exclusively for adolescents and teens on the autism spectrum, offering an opportunity for autistic adolescents and teens to interact in a supportive, autistic-friendly internet environment. The group is sponsored by the Autistic Self-Advocacy Network, an international non-profit organization run by and for autistic adults and youth, working to advance neurodiversity, disability rights and autistic culture.

Group Rules:
1. To join you must be on the autism spectrum (self-diagnosed individuals are welcome) and at least 13 years of age.
2. Be respectful of your fellow list members.
3. Do not repost messages outside of the list.
4. If you have a question, feel free to ask.
5. Do not engage in personal attacks against other list members.

The list will be closely moderated by adults from the Autistic Self Advocacy Network to ensure that all list content remains legal, age-appropriate, free of spam and solicitation, and in compliance with the group rules.

To join the group, visit http://groups.yahoo.com/group/ASANTeens , click the "Join this group" button, and follow the instructions.For more information, contact list moderator Dora Raymaker at dora@aaspireproject.org.

Please pass this information along to any adolescents and teens you know who would be interested!

No Myths Autism PSA: A Different Kind of Autism Awareness

2009-04-17T08:53:00.002-04:00

ASAN worked with the Dan Marino Foundation and Kent Creative to develop the following autism PSA.

Youtube link: http://www.youtube.com/watch?v=Y_dPZDcX_ck
Captioned Version: http://www.overstream.net/view.php?oid=udtvrbt0rlao

Go to http://www.nomyths.org/ to learn more. This PSA is brought to you by the Autistic Self Advocacy Network (http://www.autisticadvocacy.org/), Kent Creative (http://www.kentcreative.com/) and the Dan Marino Foundation (http://www.danmarinofoundation.org/).

About the Public Service Announcement:

The "No Myths" PSA offers a refreshingly positive and optimistic view about life with autism. And it was written and performed by people who should know--individuals who are on the autism spectrum themselves. The purpose of the PSA is to tell society that, with the right supports, people with autism can do anything anybody else can do, even if it isn't in the same way. Ari Ne'eman, president of the Autistic Self Advocacy Network, leads a cast that includes {in order of appearance} Dena Gassner, Ben Liske, and Jacob Pratt.

The Dan Marino Foundation of Weston, FL sponsored the piece, which was filmed by Nashville-based Kent Creative. Jon Kent directed the PSA and Britt Simmons was the Director of Photography.

"No Myths" was filmed inside the Parthenon in Nashville, TN. The Nashville Parthenon, which was built in 1897, is a full-scale replica of the ancient Greek Temple. The two bronze doors, used as a symbol throughout the PSA, weigh 7.5 tons each, and are thought to be the largest pair of matching bronze doors in existence. The producers wish to thank Citation Film Support and the Filmworker's Club of Nashville for their generous support of this project.

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530

Youth Leadership Forum - Applications Due By March 31, 2009

2009-03-14T10:04:00.003-04:00

"Empowering Young Leaders for the 21st Century"

http://www.vaboard.org/ylf.htm

The YLF-VA program seeks to empower young people with disabilities to further develop their leadership skills. Students, serving as Delegates from communities throughout Virginia, participate in a wide range of activities and learning experiences during the four day Youth Leadership Forum set on a university campus.

The YLF curriculum includes training and development of individual career and life-goals, leadership skills, social skills, and self-esteem. Delegates benefit from sharing the experience of an energetic and socially enriched environment with other delegates, distinguished guests, mentors, and highly motivated volunteer staff.

Program Components:

Small Working Groups to explore and develop self-awareness profiles, personal leadership goals, career and academic plans.
Diverse Activities including educational, social, artistic, athletic and recreational events that demonstrate to young people the joy of leading a well-rounded life.

Guest Speakers and Faculty that address issues such as disability rights laws, innovations in technology, use of assistive technology, employment opportunities, community volunteerism, advocacy and legislative opportunities in the Commonwealth.
Interaction with Guest speakers and staff-people with disabilities from the private and public sector who have successful careers and/or businesses and who have maximized their talents and serve as role models.

Field trip to the State Capitol that provides an opportunity to interact with high-level elected officials in Virginia's state government.

Eligibility, Recruitment, and Selection of Student Delegates:

Eligible candidates include rising high school juniors and seniors from Virginia who have a disability, are highly motivated, and have demonstrated leadership potential.

Student Delegates are recruited statewide through a competitive application and interview process. Application requirements include written references and in-person interviews. Recruitment strategies incorporate criteria into the student selection process that, while being competitive, enable students to attend the Forum who might otherwise not have the opportunity for leadership development and who demonstrate potential and desire to become future leaders. Recruitment and selection strategies include procedures and outreach that demonstrate full commitment to including students with developmental disabilities as well as other disabilities.

Volunteers:

The YLF depends on a committed network of volunteers. The volunteers are involved in all aspects of assuring a successful experience for the Delegates including planning and preparation, delegate recruitment and selection, fundraising, serving as YLF staff, speakers, panel members, mentors, or dorm parents, and assisting with travel and logistics. Volunteers come from a variety of diverse areas including directly from the community, service agencies and organizations, YLF Delegate Alumni, Partners in Policymaking Alumni and other organizations.

Applications & Forms

An application to participate as a student Delegate to the Youth Leadership Forum may be submitted by e-mail, by fax, by U.S. Mail, or by direct delivery. Information on how to complete and submit the application in each of these ways is included in their instructions. Electronic submission by e-mail is preferred.

http://www.vaboard.org/ylf.htm

Partners in Policymaking - 2009-2010 Applications Due by April 30, 2009

2009-03-14T09:58:00.001-04:00

Become a Partner in Policymaking

http://www.vaboard.org/policymaking.htm

Recruitment of individuals with developmental disabilities and parents of young children with developmental disabilities for the 2009-2010 Virginia Board for People with Disabilities’ (VBPD) Partners in Policymaking (PIP) advocacy training program is currently underway. Partners graduating with the Class of 2010 will join over three hundred current alumni of the Virginia PIP program, and thousands who have graduated from similar programs across the country, who have learned how to make a difference every day for themselves, their families, and their communities.

Individuals participating in PIP attend advocacy training, resource development, and skill building workshops led by state and national experts. Topics covered include the history of the disability movement, self advocacy, independent living, supported employment, building inclusive communities, natural supports, legislative advocacy, assistive technology, communication, team building, and much more!

VBPD covers all expenses for participants’ training, lodging, meals, and travel.

Program participants attend and actively participate in eight two-day sessions, from Friday afternoon and to late Saturday afternoon, in Richmond, Virginia. Detailed information including how to apply, an overview of the program, the schedule for the coming year, and staff contacts appear below.

To Apply
To be considered for participation in Partners in Policymaking, individuals must submit a completed application and provide three letters of recommendation. Applications and recommendations may be submitted by e-mail, by fax, by U.S. Mail, or by direct delivery. Information on how to complete and submit the application in each of these ways is included in its instructions. Electronic submission by e-mail is preferred.

To complete an application electronically, then submit it by e-mail, fax, mail, or direct delivery, click on the following link:

Partners in Policymaking Application (Interactive Word Format)
This application may also be printed and completed by hand for submission by fax, mail, or direct delivery.

Annual PIP enrollment is limited. To be considered for the coming year, completed application forms and letters of recommendation must be received in the Virginia Board for People with Disabilities office by no later than close of business on the announced deadline, listed above and on the application form.

Overview
Partners in Policymaking participants are people who live in Virginia, have a developmental disability or are parents of young children with developmental disabilities. Individuals attending the program will participate in advocacy skill workshops, resource development, and leadership training.

Application and selection as a participant for the program requires a substantial commitment of time, motivation and energy. If accepted, the Partners in Policymaking program requires attendance and participation in eight two-day sessions between September and May. Each session begins on Friday afternoon and concludes Saturday afternoon. Participants meet competencies by agreeing to complete homework, class assignments and one major project.

The group of selected participants will build networks with state and national leaders as well as one another. Participants will be educated on current issues, state-of-the-art approaches and best practices in many areas including:

History of Disability Movements
Self-Advocacy
Independent Living
Inclusive Education
Supported Employment
Personal Futures Planning
Building Inclusive Communities
Natural Supports
Assistive Technology
Communication & Team Building
Legislative Process and Strategies

http://www.vaboard.org/policymaking.htm

White House Internships

2009-03-11T20:19:00.000-04:00

White House Internships

On Thursday, March 5th, ASAN joined representatives of several dozen advocacy organizations at a briefing at the White House on upcoming changes to the White House Internship program. The White House Office of Public Liaison is actively interested in recruiting a diverse applicant pool, including individuals with disabilities, to the White House Internship program. They have asked us to forward this to our networks and encourage autistic college students and recent college students to apply. Feel free to forward this announcement.

President Obama Launches White House Internship Program

President Obama today launched the White House Internship Program for his administration and announced that applications are currently being accepted for the summer of 2009. Those selected to participate in the program will gain valuable job experience and an inside look at the life of White House staff while building leadership skills.

“This program will mentor and cultivate young leaders of today and tomorrow and I’m proud that they will have this opportunity to serve,” said President Obama. “I look forward to working with those that are selected to participate and I want to commend all who apply for their desire to help through public service to forge a brighter future for our country.”

In addition to normal office duties, interns will supplement their learning experience by attending a weekly lecture series hosted by senior White House staff, help at White House social events, and volunteer in community service projects.

The 2009 Summer Internship program runs from May 22 to August 14, and the submission deadline is March 22, 2009.

Those interested in applying to the White House Internship Program must be:
• US Citizens
• Eighteen years of age on or before the first day of the internship.
• Enrolled in a college or university (2-4 year institution) or must have graduated from college in the past two years.

Interns will be placed in a departmental office for their internship. Below is a list of departments in the Office of the President and the Office of the Vice President where interns could be placed.

White House Department of Scheduling and Advance
The Office of Cabinet Affairs
The White House Communications Department
The White House Office of Public Liaison and Intergovernmental Affairs
The Office of the First Lady
The White House Office of Legislative Affairs (OLA)
The Office of Political Affairs
The Office of Management and Administration
The Office of White House Counsel
The Domestic Policy Council
The White House Office of Presidential Personnel
Office of the Vice President

More information on the White House Internship Program, including application instructions, can be found at: www.whitehouse.gov/about/internships
Posted by asansouthwestohio

Star Ledger: Assemblyman proposes closing five institutions for developmental disabled

2009-01-08T10:41:00.000-05:00

Assemblyman proposes closing five institutions for developmental disabled
by Susan K. Livio/The Star-Ledger
Thursday January 08, 2009, 6:00 AM
Five of the seven state institutions for people with developmental disabilities would close within five years and the money now spent on them would be used for community housing under a bill a prominent lawmaker is expected to announce today.
Assembly Budget Chairman Louis Greenwald (D-Camden) expects a fight from state labor leaders, which represent nearly 8,000 workers, and families who prefer the around-the clock care provided by the developmental centers.
Mitsu Yasukawa/The Star-LedgerAssemblyman Louis Greenwald (D-Camden), chairman of the Assembly Budget Committee, speaks in June 2008.
But he says there are compelling moral and economic reasons to "radically restructure" the way the state spends money on people with developmental disabilities.
"We are warehousing human life," Greenwald said Wednesday. "We pride ourselves on being a progressive state in health care and science, but New Jersey is so far behind other states in this area. Every other state has closed 140 institutions, and New Jersey has not closed one in 10 years."
Greenwald said the state can no longer afford to support seven institutions, where it costs about $227,000 to house each of their 2,900 residents. He estimated community care would cost less than half of that amount.
"In the economic crisis, we face an opportunity to change failed public policy," Greenwald said.
The facilities, funded by the state and federal governments, cost $384 million in a year to operate, according to the state Department of Human Services.
Under Greenwald's bill, two centers -- one in north Jersey, the other in south Jersey -- would remain open to accommodate the people who want to stay.
The state Division of Developmental Disabilities has moved 176 developmental center residents to community homes over the past two years, division spokeswoman Pam Ronan said. State officials support the bill's concept, "but we are currently reviewing each provision."
State Human Services officials say there are roughly 2,400 people living at institutions who are willing and able to move to community housing.
Reaction to the bill was mixed. Families, advocacy groups and labor leaders said they were stunned by its ambitious scope.
Robin Sims, whose 25-year-old daughter with autism is living happily at Hunterdon Developmental Center, said the bill "shows no respect" to families like hers.
"Why don't they ever talk to the people it affects?" Sims said. She said she has seen some people leave Hunterdon, only to have their medical and psychological conditions regress because community-based care is lacking.
Joseph Young, executive director for Disability Rights New Jersey, which sued the state on behalf of people who want to leave institutions and 8,000 others living with families who are on a waiting list for state-funded housing, called the bill "an incredibly ambitious program.
"Whether they can logistically do it I have no idea, but clearly they are headed in the right direction," Young said.
Don Klein, executive vice president for Local 1040 Communications Workers of America, said the bill appears to be a stunt to save money at the expense of fragile disabled people.
"In our facilities, the residents get occupational therapy, physicians, dentists -- the whole array." The bill is "an assault on these folks," he added.
Norman Reim, spokesperson for the state Council on Developmental Disabilities, praised Greenwald "for taking this on and looking for a long-term strategy."
Reim, however, said the savings may not come right away, noting that when the state closed the North Princeton Developmental Center in Montgomery 11 years ago, a lot of the money was plowed back into creating community services. "You won't reap the savings until a centers is closed, until the last person leaves," he said.
The bill would create a 17-member Community Services Planning Council for Persons with Disabilities responsible for drafting the plan within six months to phase out the five centers and move willing and able people into community housing. The council would be comprised of state officials, advocacy group members, housing provider agencies, families, union leaders and professional experts.
Within five years of the law's enactment, 80 percent of the developmental center population would be placed in the community.

--
Ari Ne'eman
President
The Autistic Self Advocacy Network

Summary of NJ De-institutionalization Bill A3625

2009-01-08T10:33:00.001-05:00

This bill changes the way in which the Division of Developmental Disabilities (DDD) in the Department of Human Services (DHS) will use resources to provide services to persons with developmental disabilities by reducing the division's reliance on developmental centers and strengthening and expanding community based services and supports. Instead of investing a disproportionate share of the division's budget to support an inappropriate level of care through the State's seven developmental centers, the bill provides for the development and expansion of access to community services and supports to meet the unmet needs of persons on the community services waiting list, those persons in developmental centers whose interdisciplinary teams have made recommendations for community placement and who choose such placement, youth with developmental disabilities to transition to the adult system in a seamless and timely manner, and persons with developmental disabilities who are residing with their families.

The bill shifts financial and human resources from the State developmental centers and, instead, uses these resources to strengthen and expand community-based services, supports, and residential options to address unmet need by consolidating and closing developmental centers retaining one each in the northern and southern regions of the State within five years of the bill's effective date.

To make these changes, the bill establishes: the "Community Services and Support for Persons with Developmental Disabilities Bridge Fund"; the Community Services Planning Council for Persons with Developmental Disabilities in DHS which would create an implementation plan; and a steering committee to oversee the implementation of the plan.

The fund would be established in the Department of the Treasury as a nonlapsing, revolving fund which would be the repository for moneys generated by:

* the amount of Capital Construction funds appropriated for Other State Projects and Energy Efficiencies - Statewide Projects, which are intended to fund capital projects at the State developmental centers, excluding capital project costs that: will result in a reduction in overall operational expenditures at developmental centers; are required for life safety or environmental enhancements at developmental centers; are required as a condition of licensure, accreditation, or receipt of federal Medicaid reimbursement; or are required as part of an agreement between the State and the federal Department of Justice;
* fiscal year 2009 and each successive fiscal year through the end of fiscal year 2013 savings by DDD in "salaries and wages expenditures" due to reductions in overtime expenditures;
* fiscal year 2009 community care waiver federal financial participation funds received in excess of the amount identified in the appropriations act, as modified by the Governor's recommended budget for fiscal year 2010 and each successive fiscal year through the end of fiscal year 2013;
* reductions in developmental center operational costs achieved through consolidation in the first year and each subsequent year;
* proceeds achieved through the sale of developmental centers, to be utilized in accordance with the provisions of section 5 of P.L.1997, c.258 (C.30:4-177.57) (for capital and equipment costs associated with the development of community placement); and
* unspent funds from DDD's fiscal year 2009 budget and each successive fiscal year through the end of fiscal year 2013.

The bill specifies that the moneys in the fund would be distributed in a planned and expedient manner, through a request for proposal or other purchasing model that utilizes contract systems which promote timely access to services and supports. The moneys would be used to:

* build service capacity and expand access to certain services and supports in the community, as listed in the bill;
* establish a moratorium on future placements in developmental centers, except for court-ordered placements or in instances of imminent danger to life/safety; and concurrently develop, strengthen and expand community-based services, supports, and residential options to meet emergency needs;
* consolidate, downsize, and reduce reliance on developmental centers;
* afford the workforce of current developmental centers the opportunity for early retirement or alternate workplace opportunities within the State, including, but not limited to, employment at the consolidated developmental centers or at other State institutions;
* redeploy staff positions from developmental centers in a staff without walls approach that retains state status to regional or county assignments that support community-based services systems, fill gaps in regional and county operations, including but not limited to community casemanagent, specialty care such as occupational therapy, physical therapy, and medical, dental and other health related services, and address gaps in professional and direct care positions in the community;
* meet the unmet needs of persons on the community services waiting list in order to: reduce continued growth of the waiting list; avert the need for emergency out-of-home placement in a developmental center; and support persons with developmental disabilities who live with their families and afford them quality, engaged lives in the community, while also providing stability to families caring for loved ones at home;
* provide a seamless transition for young adults with developmental disabilities who are leaving the education system but are in need of continuing services and supports; and
* maximize available federal funds and direct those funds toward community-based services.

The Community Services Planning Council for Persons with Developmental Disabilities established under the bill would consist of 17 members as follows:

-- the Commissioner of Human Services and the State Treasurer, or their designees; the Assistant Commissioner of the Division of Developmental Disabilities in the Department of Human Services; and the chairs of the Assembly Budget and Human Services Committees and of the Senate Budget and Appropriations and Health, Human Services and Senior Citizens Committees, or their designees, who shall serve ex officio; and

-- 10 public members, to be appointed by the Commissioner of Human Services, as follows: two advocates for persons with developmental disabilities who are persons living with developmental disabilities, two family members of persons receiving services from DDD who have transitioned to community living from a developmental center, a representative from the Family Education Project in the School of Public Health in the University of Medicine and Dentistry of New Jersey, a representative from the New Jersey Association of Community Providers, a representative from the Autistic Self Advocacy Network, a representative from Advocates for Alternatives, Inc., a representative from a labor union, and a recognized national expert on developmental disabilities, public policy, and systems design and development.

The council is required to create a preliminary and comprehensive implementation plan that would:

* provide an overall strategy for the reduction of the population in the developmental centers by 80% within five years of the bill's effective date, and for the reduction in the number of developmental centers to one each in the northern and southern regions of the State;
* provide for the transfer into the community of persons with developmental disabilities residing in the developmental centers whose interdisciplinary teams have made recommendations for community placement and who choose such placement;
* provide details about the reduction, transition, and redeployment of the workforce, and of the downsizing and sale of developmental centers, which shall include the ongoing costs for preparing for the sale of developmental centers and a fiscal analysis of the redirection of funds to support community living;
* provide details about: the development and expansion of community services, supports, and residential options to meet the unmet needs of persons on the community services waiting list; the moratorium on future placements in developmental centers and the needs of persons in the developmental centers who will remain in a developmental center; the needs of youth with developmental disabilities to transition to the adult system in a seamless and timely manner; and support services to persons with developmental disabilities who are residing with their families;
* specify clear procedures for accomplishing the tasks necessary to carry out the provisions of the bill, and define positions of responsibility to accomplish these tasks in a timely, effective, and efficient manner;
* specify measureable objectives, and benchmarks and timeframes for meeting those objectives within five years of the bill's effective date;
* stipulate the use of moneys in the fund to strengthen and expand access to community services and supports; and
* specify a timetable and funding necessary to shift resources from institutional to community support.

The bill requires the council to submit the plan, which shall include a minority report, if applicable, to the Governor and Legislature within 180 days of the date of organization of the council.

In addition, the steering committee, established under the bill to monitor the plan's implementation, would consist of not more than 30 members and would include:

-- the members of the council; and

-- other members appointed by the Commissioner of Human Services as follows: the deputy and assistant directors or regional administrators of DDD, or both, who shall serve ex officio; representatives from developmental disabilities community provider organizations; and persons with developmental disabilities who are residing in the developmental centers or are on the community services waiting list, or their family members, or both.
Lastly, the bill requires the Commissioner of Human Services to provide quarterly progress reports on the development and implementation of the plan to the Governor and the Legislature.

--
Ari Ne'eman
President
The Autistic Self Advocacy Network

Summary of NJ De-institutionalization Bill A3625

2009-01-08T10:33:00.000-05:00

Comments To Be Given Today at Press Conference on NJ De-Institutionalization Bill A3625

2009-01-08T10:20:00.000-05:00

Although this is a New Jersey initiative, it's very important and so I will be adding several posts to the NOVA blog.
--

Comments To Be Given Today at Press Conference on NJ De-Institutionalization Bill A3625

Ten years ago, the Supreme Court of the United States of America ruled that it wasn't a crime to have a disability. Today, we launch an effort to make the reality in New Jersey match that ruling. New Jersey's current overuse of institutions has left thousands of individuals with developmental disabilities locked away and thousands more on waiting lists. As a self-advocate running an organization of adults and youth on the autism spectrum, the Autistic Self-Advocacy Network, I feel this issue is one of great personal importance. Our people have been locked away for ages in conditions that often challenge the very idea of civilization. The history of disability policy over the last thirty years has been a story of constant struggles for greater inclusion, greater support, greater access, greater rights and greater opportunities for our people. Through the introduction of this legislation, we take a step forward in the spirit of that history to end a system whereby individuals have no choice but to live apart from their families, their homes and their communities.

One of the things that I find most impressive about this initiative is that it is supported by representatives from every major group in the disability community: parents, providers and people with disabilities ourselves all understand the importance of freeing our people from unnecessary and all too often abusive institutional settings. Let us be clear: this is not merely a bureaucratic reshuffling of how service-delivery occurs – it is a realization of one of the most crucial human rights issues of our time: the right of individuals with disabilities not to be segregated and marginalized but instead to be included and supported throughout society. The message that we send through supporting balancing our service-delivery infrastructure to support community services is that people with disabilities can, with the right support, succeed in being recognized as full members of our communities and citizens in our society. I'd like to thank Assemblymen Greenwald and the groups here today for their support of a better future for people with disabilities.

Thank you and Free Our People.

--
Ari Ne'eman
President
The Autistic Self Advocacy Network

JLARC autism study-ASAN comments

2008-12-31T14:20:00.000-05:00

The Autistic Self Advocacy Network-VA sent this comment to Virginia’s Joint Legislative Audit and Review Commission (JLARC). JLARC is conducting a study of autism services in the state.

---

The Autistic Self Advocacy Network appreciates the Joint Legislative Audit and Review Commission (JLARC) opportunity to address the state of autism services in Virginia.

In general, a main factor that impacts the ability of Virginians on the autism spectrum to access services is the lack of a central location online, or agency-based clearinghouse to access information about services. Information about autism and developmental disability-related services and programs is not disseminated from any central location.

Adults on the autism spectrum may need accommodations in order to access information about services, and the services themselves. Some options include online information access in a single location. Information should include housing options, health care access, and assistance in navigating various agencies and systems, since often the amount of information, paperwork, phone calls, etc. can preclude someone being able to access assistance effectively, if at all. Families of adults on the autism spectrum often also need access to information about available services. The EasyAccess site does provide some information but a search of that site does not provide autism-specific information that could be useful to parents and people on the autism spectrum.

The VA Board for People with Disabilities or another DD agency should have an online portal specifically for autism, and also dedicated staff, to ensure that families, and individuals on the autism spectrum, are able to obtain accurate and timely information.

Key services needed:

Housing:

Alternatives to group homes, ICF/MRs and institutions. Put more money into the hands of people on the autism spectrum and families rather than shoring up aging institutions. Virginia is one of only three states that has closed no institutions. The DD and MR waiver wait lists are years long. Consider public-private initiatives. Housing considerations should include: accessibility to public transportation, safety considerations, affordability, and availability of support personnel if needed.

In addition, the lack of accessible, affordable housing is a major barrier to independent living.

Health care access for age 21 and over:

Adults on the autism spectrum need access to medical services, including appointment-making assistance, help with identification of health needs, preventative health care, and training of medical personnel including office staff, so that access is more likely and more effective.

Identify, develop, and disseminate "autism-friendly" physicians' practices, with such accommodations as online scheduling, some assistance with insurance claims, and the like. This could be a pilot project with input from people on the autism spectrum. A current community-based research project by The Academic Autistic Spectrum Project in Research and Education is studying health care access issues. Utilize findings from this study (when available) in order to determine health care needs and access
needs of adults on the autism spectrum. (http://www.aaspireproject.org)

Personal assistance services (PAs) are needed by some individuals on the autism spectrum, both children, and adults who have aged out of education and health insurance systems. The Autistic Self Advocacy Network recommends training of appropriate service personnel, with input from autistic adults, who will have the most informed ideas about what kinds of care they need.

Assistive technology access:

Information about assistive technology, including assistive and augmentive communication devices available, funding sources, and state insurance requirements. Information and links to assistive technology information sites, and decisionmaking options (not just sites that actively sell assistive and augmentive communication devices) should be provided at the central location we recommend.

Employment options:

Training of employers and co-workers so that more people on the autism spectrum can be placed in situations that will work for both the employee and the employer. Suggestions include an information brochure for employers who are identified as wanting to participate in an assisted employment program. Input from adults and
teens on the autism spectrum as to needs in the workplace is crucial.

Job counseling for individuals on the autism spectrum. The job counseling should be individualized and tailored to the individual’s needs and understanding about employment options. Job counseling should not follow stereotyped assumptions about what jobs or employment situations are appropriate for people on the autism spectrum. Again, input from and consultation with autistic adults can be invaluable.

Transportation:

Many teens and adults on the autism spectrum do not drive, yet have transportation needs for employment, health care, personal, and recreation needs. Increasing the types of transportation available, both fixed-time and route and on-demand services, is crucial for full integration into the community. In addition, some adults may need assistance with understanding bus schedules and other forms of transportation so as to be able to access available transportation. One model, which takes into account such issues as sensory differences, is the United Kingdom’s Disabled Persons Transport Advisory Committee. This committee works to address barriers to accessibility, including the training of transportation staff in awareness of various disabilities and how they impact users of public transportation.

Transition supports:

Under the Individuals with Disabilities Education Act, students with disabilities who have Individualized Education Plans must receive a plan for transition by age 16. However, Virginia state law mandates that such a plan be implemented by age 14. This earlier age for transition planning should be kept in place. In addition, to facilitate effective transition planning, the state should work to integrate the adult services infrastructures, such as Vocational Rehabilitation, Community Living and similar service-delivery systems, with the transition process in Virginia high schools. Experiential learning options have been shown to have a positive impact on student transition and should be incorporated into student IEPs in a way that works with the unique strengths of autistic students. Furthermore, Virginia must work to increase the number of students on the autism spectrum who will have access to higher education opportunities. As students with disabilities in the post-IDEA infrastructure sometimes require documentation to qualify for ADA accommodations in higher education and the workplace, Virginia should institute a requirement that schools offer parents the opportunity to receive new, current educational testing prior to graduation, in order to ensure students leave school with the necessary materials for accessing their legal rights in the post-IDEA infrastructure.

Adequacy of autism service delivery system:

Diagnoses of young children: Some publications in the state of Virginia geared toward newly diagnosed children are unnecessarily alarmist. A quote from the first sentence in a packet from on of the major diagnostic clinics: "Parents are devastated when they learn of an autism diagnosis." This leaves no room for parents to have other reactions, and has been off-putting in some cases, leading parents to look elsewhere for information. Diagnoses should stick to known facts about autism spectrum conditions.

Diagnosticians should consult with parents, families, and individuals on the spectrum as to the best ways of disseminating information about diagnoses. The Autistic Self
Advocacy Network currently consults with parents of newly diagnosed children to provide alternative, and more affirming views of autism without neglecting the very real challenges that families and individuals on the spectrum face.

Public school services:

Training of aides and teaching assistants in understanding of autism spectrum conditions. In addition to knowledge about behaviors, consult with adults on the autism spectrum for information about why behaviors occur. Consultation with adults on the autism spectrum, who are necessarily more familiar with the needs of autistic persons than anyone else, should be a preferred source of information on this matter.

Strategies like Positive Behavioral Supports should be developed and implemented
throughout all school districts. Pilot programs can be developed in several districts and then disseminated throughout the entire state.

There is no regulation or oversight regarding the use of restraints and seclusion time-outs for children with special needs, including autism, in Virginia public schools. The only document is the 2005 "Guidelines for the Development of Policies and Procedures for
Managing Student Behaviors in Emergency Situations in Virginia Schools Focusing on Physical Restraint and Seclusion."

The preface to the document asserts: "These guidelines are informational and are neither mandated nor required." Without adequate regulation and legislation regarding the use of restraints and seclusion, children, particularly those with special needs, including autism, are at risk for being subject to abuse of restraint devices and seclusion rooms.

Adequacy of coordination of services over entire lifetime:

Many parents and individuals on the autism spectrum feel that once they age out of the school system, there are few services, and the services there are, are not accessible. Parent advocates and self-advocates are creating their own programs (one source is graduates of VBPD's Partners in Policymaking program) to fill in the gaps in supported
employment, housing, community day programs, and others.

Even with dedicated efforts by individual advocates and organizations, state-level and/or public-private initiatives (with oversight) need to be in place. Children who are on the autism spectrum now will grow into adulthood as autistic individuals, many with some remaining degree of disability. Services and supports need to be in place and ongoing for future generations of Virginians with developmental disabilities. The Autistic Self Advocacy Network has a growing network of consultants on the autism spectrum who can assist with development of programs, including public policy advocacy, outreach to media, educational consulting, and social and support groups and networks.

ASAN signs letter to Governor Kaine

2008-11-14T15:43:00.002-05:00

The Autistic Self Advocacy Network is a signatory to this Virginia Coalition for Students with Disabilities letter to the Governor of Virginia. The letter requests an opportunity to directly discuss significant concerns about the proposed Special Education Regulations changes with Governor Kaine. The proposed regulations contain major changes that would reduce or eliminate broad categories of protections for parents and students.
-----

November 6, 2008

Dear Governor Kaine:

Thank you for reaffirming your promise during your recent appearance on WTOP's recent "Ask the Governor" program not to reduce existing parental involvement in the proposed special education regulations. In doing so, you raised the hopes of parents across Virginia that misguided efforts to take away rights from parents of children with disabilities – rights that are vital to ensuring equality and fairness in the parent-school partnership – will not succeed.

We are extremely disappointed that the recently approved regulations reduce parent involvement and consent rights in disregard of the desires expressed in your memo of March 21, 2008 to the Board of Education. With regard to the specific measures you identified, the regulations fail to ensure the right of consent for parents of transfer students and the right to participate in a Functional Behavioral Assessment of their child. You also stated your intention in the memo that parent involvement not be reduced in other areas. However, these final proposed regulations continue to:

Deny parents the right to participate in the referral and screening process through the elimination of "Child Study Committees" as well as required state-wide uniform procedures and timelines.
Deny parents the right to receive timely re-evaluation reports due to the approval of an unnecessary extension of the timeline.
Deny children with disabilities access to appropriate services due to new restrictive and arbitrary eligibility criteria.
Deny young children with disabilities access to appropriate services due to new limits on the label of "developmental delay".
Deny parents the right to ensure the inclusion of short-term objectives or benchmarks in their children's IEPs.
We know that some supporters of the recently approved regulations are arguing that they constitute a reasonable compromise between saving money and serving children. This is untrue. The proposed regulations cannot be considered a reasonable compromise when only one party loses rights and the other party gains them. Worst of all, the losers in this situation are Virginia's most vulnerable children. For your further review we have attached a full list of all areas where changes in the proposed regulations roll back current rights and protections for children.

Parents have contacted you not to ask for new rights and protections, but to advocate for retaining the rights they now have. These are rights that have well served children with disabilities for decades and have no justifiable reason for being eliminated. Certainly, denying services to children who need them will not save money, but will shift the burden for meeting their needs onto unprepared teachers and overstretched schools. Such an approach will only negatively impact classroom instruction, teacher retention, and state performance on standardized tests, while increasing suspension/expulsion rates and leaving many children with disabilities unprepared to face the challenges of adult life.

The proposed regulations represent a significant policy shift for Virginia. If these regulations are approved in their current form, an entire class of citizens in Virginia will lose rights for the first time in over 20 years. Instead of ensuring that Virginia leads the way as you have championed, these regulations will put the Commonwealth years behind by taking away the hard won gains of children with disabilities.

We request an opportunity to directly discuss these significant concerns with you. Please let us know a date and time when you might be available to meet. The individual futures of tens of thousands of Virginia's most vulnerable children are truly at stake and require your direct intervention.

Sincerely,

Maureen Hollowell

Attachment: Comments from the Virginia Coalition for Students with Disabilities on the proposed Regulations Governing Special Education Programs for Children with Disabilities in Virginia

Access Independence, Inc
403 B Loudoun Street
Winchester, VA 22601
Contact: Donald Price, Executive Director
Email: askai@accessindependence.org

Appalachian Independence Center,Inc.
230 Charwood Drive
Abingdon, VA 24210
Contact: Greg Morrell, Executive Director
Email: gmorrell@naxs.net

The Arc of Loudoun
71 Lawson Road
P.O. Box 243
Leesburg, VA 20178
Contact: Eleanor Voldish, Executive Director
Email: Eleanor@thearcofloudoun.org

The Arc of Northern Virginia
98 N. Washington StreetFalls Church, VA 22046Contact: Nancy Mercer, Executive DirectorEmail: nmercer@thearcofnova.org

The Arc of Rappahannock
1640 B Lafayette Boulevard
Fredericksburg, VA 22401
Contact: Jan Griffin, Executive Director
Email: exec@arcr.vacoxmail.com
The Arc of Virginia2025 E. Main Street, Suite 107Richmond, VA 23223Contact: Jamie Trosclair, Executive Director
Email: jtrosclair@arcofva.org
The Autistic Self Advocacy Network (ASAN)
1660 L Street, NW, Suite 700
Washington, DC 20036
Contact: Paula C. Durbin-Westby, Board of Directors Virginia CoordinatorEmail: pdurbinwestby@gmail.com

Autism Society of American – Central Virginia
P.O. Box 29364Richmond, VA 23242-0364
Contact: Bradford Hulcher
Email: asacv@aol.com

Autism Society of America – Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Christopher Waddell, President
Email: acwaddell@gmail.com

A Voice for GAP Kids
P.O. Box 174
Rockville, Virginia 23146
Contact: Tim Moore
Email: tim@voiceforgapkids.com

Blue Ridge Independent Living
1502 B Williamson Road NE
Roanoke, VA 24012
Contact: Karen Michalski-Karney, Executive Director
Email: kmichalski@brilc.org

Clinch Independent Living Services
P.O. Box 2741
Grundy, VA 24614
Contact: Betty Bevins, Executive Director
Email: bbevins@vmmicro.net

DAC (disabled Action committee)14405 Artery Lane, #11Dale City, VA 22193Contact: Keith Kessler
Email: DAC4VA@aol.com

disAbility Resource Center
409 Progress Street
Fredericksburg, VA 22401
Contact: Debe Fults, Executive Director
Email: dfults@cildrc.org

Disabilities Resource Network
c/o Bedford Community Resource Center
403 Otey Street
Bedford, VA 24523
Contact: Didi Zaryczny, Chairperson of the Board of Directors
Email: didizautism@aol.com

Down Syndrome Association of Hampton Roads
6300 E. Virginia Beach Boulevard
Virginia Beach, VA 23502
Contact: Andrea Anderson
Email: dsahr@verizon.net

Down Syndrome Association of Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Philip Pedlikin, President
Email: philip.pedlikin@plateau.com

Eastern Shore Center for Independent Living
4364 Lankford Highway
Exmore, VA 23350
Contact: Althea Pittman, Executive Director
Email: altheapittman@yahoo.com

Endependence Center
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502Contact: Maureen Hollowell
Email: mhollowell@endependence.org

ENDependence Center of Northern Virginia, Inc.
3100 Clarendon Blvd.
Arlington, VA 22201
Contact: David Burds, Director
Email: davidb@ecnv.org

The Fairfax County Council of PTAs (FCCPTA)
8115 Gatehouse Road
Falls Church, VA 22042
Contact: Sheree Brown Kaplan, Chair, FCCPTA Special Education Committee
Email: specialedchair@fccpta.org

Giraffe Program
529 Ramsey Ridge
Clinchco, VA 24226
Contact: Judy McKinney
Email: ambercounts@localnet.com

Independence Empowerment Center
9001 Digges Road, Suite 103
Manassas, VA 20110
Contact: Mary D. Lopez, Ph.D., Executive Director
Email: mlopez@ieccil.org

Independent Resource Center
815 Cherry Avenue
Charlottesville, VA 22903
Contact: Tom Vandever, Executive Director
Email: tvandever@ntelos.net
Junction Center for Independent Living
P.O. Box 1210
Norton, VA 24273
Contact: Dennis Horton, Executive Director
Email: jcil@junctioncenter.org

Learning Disabilities Association of Virginia (LDAV)
3914 Monument Avenue
Richmond, VA 23230-3902
Contact: Dr. Jean Lokerson, President
Email: jlokerso@vcu.edu

Lynchburg Area Center for Independent Living
500 Alleghany Avenue, Suite 520
Lynchburg, VA 24501
Contact: Phil Theisen, Executive Director
Email: Phil@lacil.org

Parents in Partnership
18301 Black Hollow Rd.
Abingdon, VA 24210
Contact: Melissa Meade
Email: mameade@ntelos.net
Peninsula Center for Independent Living Insight Enterprises, Inc
2021 A Cunningham Drive Suite 2
Hampton, VA 23666
Contact: Ralph Shelman, Executive Director
Email: Rshelman@iepcil.org

Resources for Independent Living
4009 Fitzhugh Avenue
Richmond, VA 23230
Contact: Sandra Wagener, Executive Director
Email: wageners@cavtel.net

Tidewater Autism Society of America
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502
Contact: JoAnna Bryant, President
Email: tidewaterasa@verizon.net
Valley Associates for Independent Living205-B South Liberty StreetHarrisonburg, VA 22801
Contact: Marcia DuBois, Executive DirectorEmail: vail@govail.org

Virginia Board for People with Disabilities202 N. 9th Street, 9th FloorRichmond, VA 23219
Contact: Heidi Lawyer, Executive Director
Email: Heidi.lawyer@VBPD.virginia.gov

Virginia Office for Protection and Advocacy1910 Byrd Avenue, Suite 5Richmond, VA 23230Contact person: Julie Kegley, Staff AttorneyEmail: Julie.Kegley@vopa.virginia.gov

ASAN Coalition comments on IACC Strategic Plan

2008-10-01T20:58:00.007-04:00

ASAN and other autism and disability rights organizations submitted the following joint comment yesterday to the Interagency Autism Coordinating Committee:

The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021

September 30, 2008

This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum.

The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC’s decision-making process, research topic selection, research design and research implementation.

The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.

The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:

1. All federally-funded researchers must consider the impact that their research will have on autistic citizens’ human rights, their dignity, and the quality of their lives, from prenatal life forward.

Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.

2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.

Currently (as of May 12, 2008), only 1% of NIMH’s $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee’s “sense of urgency” when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.

For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals’ processing strengths and state-of-the-art technology should be pursued.

Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, “We know that behavioral treatments make some difference but it’s a relatively small amount of difference.”

Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children’s’ needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.

Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.

3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.

Much research and fundraising language emphasizes “costs to society” and uses the disrespectful rhetoric of “burden.” The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because “portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them.” We strongly agree.

Similarly, many NIH-funded researchers and staff speak of autism as “a devastating disorder.” However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as “impairments,” but which, in reality, are often innocuous or compensatory mechanisms.

4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.

Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: “…involve deaf people themselves at all levels of the undertaking. Federal agencies ... should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results.” We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.

Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Andrew Imparato
American Association of People with Disabilities
1629 K Street NW, Suite 503 Washington, DC 20006

Barbara Trader, MS Executive Director TASH
http://www.tash.org/

Sharisa Joy Kochmeister,
President
Autism National Committee

Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project
http://www.taaproject.com/

Compiled by ASAN Board Member Paula C. Durbin-Westby

REMINDER: Last Day to Submit Comment on Autism Services to IACC

2008-09-18T16:33:00.001-04:00

Hi everyone,

Just a reminder: tomorrow is the last day to submit comment to the Inter-Agency Autism Coordinating Committee's Services Subcommittee. You can find details about the priorities we're encouraging people to write about here. However, it is vitally important that they hear from self-advocates, so we encourage you to write something about your experiences with the autism service-delivery system and areas where you would like to see more research conducted as to how to improve services, supports and education for autistic people across the lifespan. Your support at this crucial period is appreciated.

Mail comments to:iaccservices@mail.nih.gov by September 19th, 2008. More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

ADAPT Challenges HUD, Dems, McCain on Disability/Housing Economic Crisis

2008-09-16T11:25:00.000-04:00

ADAPT Challenges HUD, Dems, McCain on Disability/Housing Economic Crisis

Washington, D.C.---ADAPT wasted no time challenging multiple policymakers on the housing crisis for persons with disabilities who have low and extremely low incomes. After setting up a tent city at HUD headquarters just after 4 a.m., ADAPT sent 100 activists to the Democratic National Committee (DNC) offices in Washington, D.C., and another hundred to a Sen. John McCain campaign office in Arlington, VA. All three entities were presented with the ADAPT platform for affordable, accessible housing.

"The DNC was cordial, and they accepted our housing platform, as well as our invitation to visit 'DUH City,' which is HUD spelled backwards," said octonagerian Barb Toomer, ADAPT organizer from Utah."The career HUD staff that met with ADAPT told our people they had no authority to make decisions and had to wait for the administration or administrative appointees to make any decisions, so the meeting felt like a waste of time. Sen. John McCain's campaign staff not only refused to even look at our housing platform, they had eleven of us arrested by police who caused injuries to at least one arrestee."

ADAPT's housing platform points to America's20longstanding and still growing crisis in the availability of affordable, accessible integrated housing. Many people with disabilities live on benefits that are only 18% of the median income, a full 25% below the poverty level, and an amount that is less than the national average rent for a studio/efficiency apartment.

"The federal government is sending stimulus payments to middle class workers, and is providing economic relief for the mortgage crisis, and maybe even the bank crisis," said Dawn Russell, Denver ADAPT. "What about all of us who live on fixed incomes? If we can't afford the cost of housing, we'll end up on the street or being forced into nursing homes and institutions. What are the federal government, Congress, and the presidential candidates going to do to help us with our housing crisis?"

In its platform, ADAPT is asking for:
· 5000 new housing vouchers per year for 10 years, targeted to people transitioning out of nursing homes and other institutions;
· Twice as much funding for the construction of new housing stock that is affordable, accessible and integrated;
· Policies and procedures to track the new vouchers to assure they remain targeted to people with disabilities when the original user becomes ineligible or no longer needs the voucher;
· People with disabilities who reside in institutional settings to be recognized as "homeless."

ADAPT's DUH City will remain in operation twenty four hours a day until Thursday, September 18. The DUH City Times will be delivered daily to every member of Congress, and there will be daily DUH TV coverage on You Tube. Background information, real stories of real people and photos can all be accessed at www.duhcity.org.

IACC RFI LINKS

2008-09-14T21:26:00.000-04:00

Mail comments to:
iaccservices@mail.nih.gov by September 19th, 2008. More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html

ASAN BACKGROUND AND TALKING POINTS ON IACC RFI- Sept. 19

2008-09-12T22:55:00.001-04:00

ASAN BACKGROUND AND TALKING POINTS ON IACC REQUEST FOR INFORMATION ON SUPPORTS AND SERVICES

BACKGROUND:

The Interagency Autism Coordinating Committee (IACC) has put out a Request for Information (RFI) to seek input from stakeholders (those interested in autism), including autistic individuals, about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

The RFI is due no later than Sept. 19, 2008, seven days from now.

This RFI provides an excellent opportunity for self-advocates and allies to make our voices heard. Members of the IACC are very interested in hearing from individuals on the autism spectrum. They’ve heard extensively from the anti-vaccine crowd, from parents, experts, researchers, and from people on the autism spectrum.

More input from autistic adults at this point, when the IACC is coming close to finalizing a budget and mission statement for the Strategic Plan, will mean more attention to the issues we consider to be most important.

The focus of this particular RFI on services and supports is an area that many autistic adults have much to say about; here is a chance to say it directly to the committee that will be allocating resources to various areas. Currently, funding is skewed toward genetic research and research into treatments and interventions.

In the time that autistic individuals have been submitting comments and testifying at IACC meetings, some positive change has been noted in the amount of funds earmarked for research into services and supports.

It is important that the IACC hear from everyone who is able to comment because part of the task of assessing importance is to determine the extent of the population that has an interest in the decisions that the IACC will make.

The IACC decides levels of funding for research into supports and services, but does not fund supports and services themselves.

TALKING POINTS

The Autistic Self Advocacy Network has developed these talking points to assist individuals in writing statements to IACC on the topic of supports and services.

The RFI lists a number of areas of concern that can be addressed. You do not have to address every topic. You can pick the ones that are the most important to you. Feel free to change the wording so that it reflects your most important priorities.

Education:

Studies need to be undertaken that assess current levels of supports and services within the public education system. When treatments and interventions that look promising are developed, additional funding must be appropriated to address implementation so that teachers, students, parents, and other education professionals are up-to-date and have access to information, training, technological resources such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the autism spectrum, is of paramount importance for research funding. Current studies that focus on diagnosis and treatment of children do not address the very real need for healthcare access for autistic adults who may not have insurance, may have communication difficulties and other difficulties that prevent them from obtaining adequate care. Education of health care professionals so that they can interact knowledgeable with autistic patients/clients is one area for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in the Community Choice Act and Money Follows the Person projects, should be undertaken. Warehousing of individuals in residential centers is undesirable yet often occurs because infrastructure for other types of housing is unavailable or underutilized. Research needs to include cost-effectiveness measures, some of which are already available, which show that housing in the community costs less than residential living.

Transitions:

Research into the most effective transition options needs to be undertaken. Parents and young adults on the spectrum often have nowhere to turn after they age out of the school environment. A clearinghouse of options should be researched and developed so that families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the autism spectrum needs to include components such as accommodations, training, and career counseling. Research in other areas such as treatment, interventions, diagnosis, and genetic research, can be used to counter stereotypes of what an individual on the spectrum can do for employment. Resources for trainers, counselors, employers, and others need to be developed so that autistic people are not discriminated against in the employment world because of stereotypes and misunderstanding. The IACC and NIMH can set the tone for accurate information that can help employers assess individual strengths and weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research initiatives should focus on this very important aspect of adult life, and life for children who will grow into adulthood. Community-based participatory research should be implemented that will accurately reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people, throughout the lifespan, and in different situations, needs to be undertaken. Areas to focus on are keeping people on the autism spectrum safe if they have a tendency to wander, or do not understand dangerous situations. Education of parents, professionals, first responders, and autistic people should be undertaken, and the best methods for ensuring safety should be addressed by research in this area. Sometimes autistic people can appear unusual in behavior, which will attract attention from law enforcement and other personnel. Training for professionals in aspects of autistic behavior that might not be understood is a crucial area to address in order to promote the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance. Some are living in poverty or are homeless. Many older autistic adults will need medication, including medication for health problems. Research into how to best reach out to older adults who may not have an autism diagnosis but may present as in need of services should be undertaken. Research into the effect of common medications, including for non-autistic-related health problems such as diabetes, should be undertaken. Because of the possibility of extrapyramidal or paradoxical drug reactions, and the general effect of certain drugs on older people, cases should be documented so that any adverse pattern of reaction can be established. Housing, health care, dental care, and community inclusion should all be addressed and tailored to the older autistic population. Community-based participatory research can be invaluable in determining the best ways to access health and other care.

Finances:

Across the lifespan, autistic children and their families, autistic adults and elders will have various financial needs. Research into how to help families and individuals on the spectrum cover the costs associated with treatments and interventions, and a clearinghouse for resources should be developed. In addition, financial resources for autistic adults who have difficulty with financial concepts should be researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be undertaken, including autistic adults as full participants in the research process in order to establish the most ethical procedures for guardianship. Guardianship should be tailored to the needs of the individual rather than being a one-size-fits-all category, since some individuals will need guardianship in limited areas, but not all aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in planning an estate, especially for individuals who may need ongoing care throughout life. Autistic adults also may need assistance with estate planning. Research leading to the development of estate planning tools that can assist families and autistic individuals in making sound decisions should be initiated.

Paula C. Durbin-Westby
The Autistic Self Advocacy Network (ASAN)

ASAN Urges Self-Advocates to Write Comments to the IACC

2008-09-04T17:02:00.001-04:00

The following announcement was released today by the Autistic Self Advocacy Network. We are strongly urging autistic self-advocates and our allies to submit comments to the U.S. government regarding autism research and services, so that our voices will be heard when the funds are allocated. It is not necessary to be a U.S. citizen to submit a comment.The role of the Interagency Autism Coordinating Committee (IACC), created in 2006, is to help formulate the direction of future scientific research about autism in the U.S.The IACC has indicated its willingness to hear from people on the autistic spectrum by including us in their invitation for comments, and by including an adult on the autistic spectrum on their board.The IACC is currently asking for comments (Requests for Information) on two different topics. These requests for comments are our chance as individuals on the autistic spectrum to have our voices heard by the IACC. This is our chance to help ensure that future research about autism is scientifically sound, ethical, and of real benefit to people on the spectrum. The number of responses really matters; please respond to the requests if you are able.REQUEST FOR INFORMATION #1Topic: Priority Questions for Supports and ServicesDeadline: 19 September, 2008The IACC would like to know what you consider to be the most important, or highest priority, research questions related to services and supports for people on the autistic spectrum. This includes any high priority questions or concerns related to education, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.This information will be used by the IACC to guide which autism research projects get funding.To get more information about the request for information, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.htmlThe deadline for comments is 19 September, 2008, so please make your comments prior to that date.REQUEST FOR INFORMATION #2Topic: Comments on Draft of Strategic PlanDeadline: 30 September, 2008The IACC has finished drafting a plan for autism research, and is now asking for comments on that plan. The best way for you to let IACC know that you feel their draft plan could be of benefit to individuals on the spectrum is to contact the IACC with your own thoughts on the draft plan.A summary of what is proposed in the plan is as follows:+ Children with a higher probability for ASD will be identified by 24 months and receive appropriate assistance.+ Discover how ASD affects development, which will lead to targeted and personalized interventions.+ Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.+ Interventions will be developed that are effective for reducing both core and associated difficulties, for building adaptive skills, and for preventing the disabilities associated with ASD.+ Communities will implement high quality, evidence-based and cost-effective services and supports across the lifespan for people with ASD.+ Advances in intervention, education and services will support and enable individuals on the autism spectrum to lead fulfilling and productive lives in the community.To get more information about the plan, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html.The deadline for comments is 30 September, 2008, so please make your comments prior to that date.
Posted by asansouthwestohio at 9:18 AM

IACC Seeks Public Comments

2008-08-22T08:12:00.001-04:00

The Interagency Autism Coordinating Committee (IACC) and its Services Subcommittee are requesting public comments on autism research, services, and related issues. These suggestions will be considered in setting the federal government's priorities for autism funding. This is a good opportunity for self-advocates to be heard:

On behalf of the IACC, the National Institute of Mental Health has issued two Requests for Information (RFI):

Response Due 9/30/08: IACC Draft Strategic Plan for ASD Research is Available for Comment. The purpose of this time-sensitive RFI is to seek comments on the draft Strategic Plan from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, officials of state and local programs for ASD, and the public at large. Please see the official RFI notice NOT-MH-08-021 at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html for more information and instructions for responding by the deadline of September 30, 2008. Responses should be directed to iacc@mail.nih.gov. Please note: The draft Strategic Plan does not include cost estimates for implementation. However, the IACC has formed a workgroup to advise the IACC about the budgetary requirements needed to fulfill the research objectives described in the draft Strategic Plan. The IACC will review the workgroup recommendations at its next meeting on November 21, 2008.

Response Due 9/19/08: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD) The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. Please see the official RFI notice NOT-MH-08-016 at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html for more information and instructions for responding by the deadline of September 19, 2008. Responses should be directed to iaccservices@mail.nih.gov

For more information about the IACC, please see http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml

R Word PSA

2008-08-13T20:21:00.003-04:00

ASAN is distributing a public service announcement, created by Christschool, in response to the offensive language used in the movie "Tropic Thunder," which is discussed below in a press release from The Arc of Virginia.

For Immediate Release
The Arc of Virginia Condemns Negative Depiction of People with Intellectual Disabilities in Film "Tropic Thunder"

The Arc of Virginia
Advocating for people with developmental disabilities and their families

FOR IMMEDIATE RELEASE- August 13, 2008
Contact: Jamie Trosclair (804) 649-8481 ext. 101 or jtrosclair@arcofva.org

The Arc of Virginia Condemns Negative Depiction of People with Intellectual Disabilities in Film "Tropic Thunder"

Richmond, Virginia- - The Arc of Virginia announced a statewide campaign to address the portrayal of an individual with an intellectual disability in the movie "Tropic Thunder" which opened nationwide this week.

"We are urging the general public not to spend their hard earned dollars on this film because of its deplorable and demeaning view of a person with an intellectual disability," said Howard Cullum, President of The Arc of Virginia. "This is an opportunity to educate our neighbors about the rights of people with disabilities - most importantly to live with the same dignity afforded every ordinary American," added Mr. Cullum.

"Tropic Thunder" features Ben Stiller portraying "Simple Jack," a person with an intellectual disability; this character is repeatedly referred to as a "retard," "moron," and "imbecile."

The Arc of Virginia and its local chapters join the efforts of The Arc of the United States and other national advocacy groups mobilizing around the use of hate-speech in referring to persons with intellectual disabilities. The Arc of Virginia is encouraging people with intellectual disabilities, their families, self-advocates, members and other stakeholders to participate in a nationwide "Rally for Respect" by boycotting the film and establishing a presence around the movie theatres where the film is being shown.

Chapters of The Arc of Virginia will have a presence at local movie theatres screening the movie throughout the opening weekend. Organizers and advocates will be distributing flyers on the R-word and hate speech along with other educational materials.

"It is not cool to say the word 'retard,'" said Co-Executive Director of The Arc of Northern Virginia Jill Egle. "The 'r-word' is very offensive to people with intellectual disabilities. I have an intellectual disability. I live and work in the community and treat everyone I meet with respect. I deserve that same respect. This is an educational opportunity for DreamWorks and for all of Hollywood."

During the 2008 General Assembly session, Virginians with intellectual disabilities initiated a grassroots movement to replace references of "mentally retarded" and "mental retardation" with "people with intellectual disability" in state code. The bill which sought to do so, HB760/SB620, passed almost unanimously, but also included a re-enactment clause that would require the state legislature to pass the bill next year in order for it to take effect.

One of the chief patrons of the bill, Delegate Chuck Caputo, joined Mr. Cullum and Ms. Egle in expressing concern about the movie, "I am extremely disappointed that this movie so strongly reinforces negative stereotypes about people with intellectual disabilities. It is critical that we continue our efforts to educate the public on just how demeaning the "R" word is and that we take whatever steps are necessary to remove the word from usage in Virginia government and in the Code of Virginia."

"When we ask Virginia not to use this word in state code, we are not simply asking for a word change," added Ms. Egle. "We are asking for dignity and the opportunity to live in a state where we are valued for the resources and talents we bring, not as a burden or second-class citizen."

To help communicate the importance of dignity and respect for people with intellectual disabilities, Will Schermerhorn of Blueberry Shoes Productions and members of The Arc of Northern Virginia have prepared a Public Service Announcement, which is available on The Arc of Virginia website at www.arcofva.org

For more information on where and when your local "Rally for Respect" will be held this week, contact your local chapter of The Arc or The Arc of Virginia state office. A listing of Virginia's local chapters can be found at www.arcofva.org