Autistic Self Advocacy Network Virginia

November 6, 2010: Join Autistic Activists Against Autism Speaks

2010-10-17T14:35:00.002-04:00

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.

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

2010-06-22T19:51:00.001-04:00

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.

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Another post on Kev Leitch's blog:

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

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

2010-02-19T09:35:00.003-05:00

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!!

Additional committee members and phone numbers:

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

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

Action Alert: Ask Governor McDonnell to Support Community for All

2010-02-14T00:04:00.001-05:00

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!

ASAN-VA Comments at General Assembly Budget Hearing

2010-01-12T16:18:00.004-05:00

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

2009-12-17T10:37:00.003-05:00

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, October 23 2009

2009-11-11T10:37:00.005-05:00

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,* and people with other disabilities such as Down Syndrome, and their families, have advocated against, and continue to advocate against, such an aim.

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

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

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

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

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

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

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

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

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

2009-10-20T22:56:00.015-04:00

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

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

2009-10-07T09:38:00.003-04:00

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

Taking Action Against "I am Autism" video

2009-09-26T08:08:00.002-04:00

ASAN is planning further action against Autism Speaks in response to its appalling "I am Autism" video. The following letter to our community from ASAN President Ari Ne'eman details some ways in which you can get involved.

Hello,

As many of you are aware, Autism Speaks sunk to a new low yesterday - even for them! The "I am Autism" campaign repeats the same tired old lies as the NYU Child Study Center's Ransom Notes ads, which our community successfully stopped in 2007, and goes even further, presenting Autistic people as useless burdens on society, on our families and on the world at large. “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,” says the video campaign. Full text is available here.

As we did in response to the "Ransom Notes" ads, we are preparing a joint letter from the disability community in response to these horrific statements, which we hope to have available early next week. If you are connected to an organization that might be interested in signing on to such a letter, please e-mail info@autisticadvocacy.org immediately.

In addition, we are encouraging people to act immediately by joining ASAN in writing singer Bruce Springsteen, scheduled to participate in an Autism Speaks fundraiser in November, to end his newfound association with this organization that devalues our lives and speaks about us without us. You can contact Springsteen's publicist at mlaverty@shorefire.com or by phone at 718-552-7171.

Finally, as we mentioned in our initial press release this morning, ASAN Activists and allies are preparing to confront Autism Speaks fundraising in their own communities. If you would be willing to organize a protest in your community, whether you are a self advocate, family member or other ally, please e-mail us at info@autisticadvocacy.org. There has never been a more important time for our community to assert our voice.

Thank you and, as always, Nothing About Us, Without Us!

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

"I Am Autism" video: Autistic Community Condemns Autism Speaks' campaign

2009-09-24T09:17:00.003-04:00

Press Contacts:

Ari Ne’eman
The Autistic Self-Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org

FOR IMMEDIATE RELEASE

Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

“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,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN), “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.”

ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive 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, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating 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 living 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,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets.

ASAN announced plans to work 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 the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”

Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:

Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html “The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc… Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”

Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks/ “I am Autism SpeaksI will steal your voice and make sure you can never speak for yourself.I will steal your parents’ money and spend it on a residence on Park Avenue.I will use demeaning language to degrade, pity and marginalize you.I have declared war on you.”

Emily (Parent):
http://daisymayfattypants.blogspot.com/2009/09/what-if-someone-did-this-with-say-downs.html “This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it.”

Sarah (Self-advocate): http://autisticcats.blogspot.com/2009/09/i-am-autism-embarrassment-trope.html “Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain. They're wrong in that, and they're also wrong to suggest that donating money to Autism Speaks and trying to find a "cure" is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”

-- Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

Autism Speaks Gets It Wrong Again: I Am Autism Video

2009-09-23T01:00:00.003-04:00

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.

Senator Edward M. Kennedy, Champion of Disability Civil Rights

2009-08-28T14:34:00.000-04:00

From YouTube

http://www.casttv.com/video/74xwkl/senator-edward-m-kennedy-champion-of-disability-civil-rights-part-1-video

Joint Letter to Secretary Sebelius on the Community Choice Act

2009-07-20T16:28:00.003-04:00

July 10, 2009 VIA Facsimile & E-Mail

The Honorable Kathleen Sebelius, Secretary
U.S. Department of Health & Human Services
200 Independence Avenue, SW
Washington, DC 20201

Dear Secretary Sebelius:

Thank you for your leadership this week in bringing the issue of Long Term Services and Supports back into the health care reform discussion by expressing support for including the Community Living Attendant Services and Supports (CLASS) Act in the health care reform legislation currently making its way through the Congress. As leaders of grassroots disability organizations, we write to request a meeting so that we can open up a line of communication with you and your team as health care reform takes center stage.

The disability community has advocated that reforming Long Term Services and Supports (LTSS) is a critical component of any health care reform initiative. As you know, adequate home and community services are not only preferred by seniors and people with disabilities, but also save money by avoiding serious secondary medical conditions, unnecessary trips to the emergency room, hospital stays and doctor visits. With your letter supporting inclusion of the CLASS Act, the administration has taken a first step in addressing this critical issue.

Although the CLASS Act would expand resources available to individuals and families to purchase LTSS to enable them to remain in their own homes in the community, this legislation does not:

eliminate the institutional bias in the Medicaid program which forces Americans with disabilities and older Americans into nursing facilities and other institutions;

meet the needs of seniors and people with disabilities who are already in nursing facilities or other institutions or who are at immediate risk of being forced into such a setting;

address the needs of seniors and people with disabilities who will require LTSS but won’t qualify for the proposed benefit because they are not working;

address the needs of persons who acquire disabilities earlier in life and won't qualify because they cannot secure employment;

provide any actual assistance for five years after it is enacted because people must contribute for five years before they can receive any benefit;

or meet the needs of persons with significant disabilities who would require more assistance than would be provided under this benefit.

That’s why we need the Community Choice Act (S683/HR1670).

The Community Choice Act (CCA) would eliminate the institutional bias in Medicaid and give a real option for seniors and people with disabilities who want to live in the community with LTSS.

It would address the needs of individuals who are at risk of institutional placement and give people who are already in such settings an opportunity to return to community living. CCA would provide immediate relief to Americans who are struggling with this issue, whether they were born with a disability, acquired one later in life, or are helping a family member. CCA provides a safety net for people with the most significant disabilities and allows people with incomes above the Medicaid level to buy into this program. Ultimately, the Community Choice Act brings federal LTSS policy in line with the Supreme Court’s Olmstead v. L.C. decision, giving every American with a disability the right to live in the most integrated setting.

We are writing to urge that the administration express its public support for including the Community Choice Act in the Affordable Health Choices Act. As a Presidential candidate and as a United States Senator, President Obama has expressed his support for and cosponsored the Community Choice Act. This legislation has a broad base of support within the aging and disability communities. In fact, over 80 national aging and disability organizations have endorsed this legislation.

We look forward to working with you to end the institutional bias so that every American is given a real choice in how and where they receive long term services and supports. We respectfully request a meeting with you this month to discuss how we can work together to accomplish our mutual goals.

Sincerely,

Bruce E. Darling
Organizer, ADAPT

Andrew J. Imparato
President and CEO, American Association of People with Disabilities

Ari Ne'eman
President, The Autistic Self Advocacy Network

Brenda Battat
Executive Director, Hearing Loss Association of America

Nancy J. Bloch
Chief Executive Officer, National Association of the Deaf

Kelly Buckland
Executive Director, National Council on Independent Living

Daniel B. Fisher, MD, PhD
Steering Committee Member, National Coalition ofMental Health Consumer Survivor Organizations

Chester Finn, President, Self Advocates Becoming Empowered

cc: Henry Claypool, Director, Office on Disability

AASPIRE Gateway Project announced by the Autistic Self Advocacy Network

2009-06-25T14:04:00.002-04:00

We are writing to you on behalf of the Autistic Self-Advocacy Network. ASAN has partnered with researchers at multiple universities to create the AASPIRE Gateway Project (www.aaspire.org/gateway). The AASPIRE Gateway Project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance. We are excited to be involved in research that is conducted with us, not just about us. The AASPIRE Gateway Project is recruiting participants with and without disabilities and participants on the autistic spectrum. You can find more information about the project in the announcement below. We would greatly appreciate it if you could forward information about the AASPIRE Gateway Project to anyone who may be interested in participating.

Regards,

Ari Ne’eman
Founding President

Scott Michael Robertson
Vice President

Board of Directors:
Paula C. Durbin-Westby
Meg Evans
Dora Raymaker

The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org

-------------------------

Participate in the AASPIRE Gateway Project

You are invited to participate in a continuing online research project called the AASPIRE Gateway Project. This online research project is conducted by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE, http://aaspireproject.org) in collaboration with Oregon Health & Science University, the University of Wisconsin-Madison, Portland State University, and the Autistic Self-Advocacy Network.

The AASPIRE Gateway Project is recruiting participants with and without disabilities, and participants on the autism spectrum, for a series of continuing online studies on topics such as health care, Internet use, online sense of community, identity, problem solving, and perspective taking. The goals of the online AASPIRE Gateway Project are

(1) to collect the Gateway Survey data;
(2) to use the Gateway Survey data to invite eligible participants to AASPIRE’s continuing online research studies; and
(3) to use the Gateway Survey data in AASPIRE’s continuing online research studies.

You may participate in the AASPIRE Gateway Project and contribute to continuing AASPIRE research studies if you are at least 18 years old, and you have access to the Internet.

The first step in joining the AASPIRE Gateway Project is completing the online AASPIRE Gateway Survey. The AASPIRE Gateway Survey asks about (a) personal information, such as age, gender, disability, education, and employment status, (b) information about which hand you prefer to use when doing activities such as writing with a pen or pencil, and (c) information about your personal preferences regarding interests, habits, and social interactions. Completing the AASPIRE Gateway Survey will take approximately 20-40 minutes. In return, you may choose to be entered into a drawing for a 1 in 25 chance to win a $25 gift certificate to Amazon.com or to receive 1 extra credit point in your introductory psychology class if you are a student at the University of Wisconsin-Madison.

Adults who identify as having a disability and adults who identify as being on the autistic spectrum are especially encouraged to participate in the AASPIRE Gateway Project.

If you're interested in participating in the AASPIRE Gateway Project, or would like to learn more about AASPIRE or the study, here are three ways you can get started:

1) Go to the study’s website at www.aaspire.org/gateway.
2) Send an email to info@aaspireproject.org.
3) Make a telephone call to Christina Nicolaidis, MD, MPH, at (503) 494-9602 or Morton Ann Gernsbacher, PhD, at (608) 262-6989.

OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison
Katherine McDonald, PhD, Portland State University
Dora Raymaker, Autistic Self-Advocacy Network

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

2009-06-22T08:27:00.001-04:00

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.

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

2009-06-15T22:19:00.001-04:00

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

2009-06-01T23:02:00.000-04:00

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'eman: Health Care Reform and the Disability Community on Huffington Post

2009-05-22T12:21:00.002-04:00

http://www.huffingtonpost.com/ari-neeman/health-care-reform-and-th_b_206492.html http://digg.com/political_opinion/Ari_Ne_eman_Health_Care_Reform_and_the_Disability_Community

Ari Ne'eman writes:

"As we speak, Congress is deliberating on vast and important changes to the system of health care in the United States. This issue is one of crucial importance to all Americans, but of particular interest to those Americans who interact with public health insurance more than almost any other group -- people with disabilities."

Among the topics addressed are:

1. Long Term Services and Supports (LTSS)

2. Health Care Disparities for People with Disabilities

3. Insurance Discrimination

4. Stop discrimination in the provision of care

To read more click on the link above.

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

2009-05-19T12:32:00.007-04:00

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

ASAN President Ari Ne'eman featured in Newsweek

2009-05-18T22:33:00.002-04:00

Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?

By Claudia Kalb NEWSWEEKPublished May 16, 2009 From the magazine issue dated May 25, 2009

A few lines from the article:

--

Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir unrest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective."

--

"We're having a national conversation about autism without the voices of people who should be at the center of that conversation."

The May 25 2009 issue is on newsstands now. Read more at:

http://www.newsweek.com/id/197813

ASAN-VA recommendations for proposed revisions to Regulations Governing Special Education Programs for Children With Disabilities in Virginia

2009-05-13T16:23:00.000-04:00

These comments were sent to the Virginia Regulatory Town Hall/Virginia Department of Education, after approval by ASAN's Board of Directors.

--

The Autistic Self Advocacy Network, the leading organization run by and for autistic people rather than parents or providers, recommends the following:

The developmentally delayed category must conform, at a minimum, to the age range of three through nine, as detailed in 34 CFR Part 300.8(b). Many children will not be identified by the age of 5; additional time will ensure that children are correctly identified and avoid miscategorization, which can cause severe educational delays. We recommend keeping the current Virginia definition of developmental delay intact, with a definition of 2-5 for preschoolers and 6-9 for elementary-aged children. All language in the proposed regulations that restricts a child’s access to FAPE based on “age eligibility” should be removed.

Expand the definition of autism under 34 CFR 300.8(c)(1)(i) so that the full autism spectrum ranging from what is often called “classic autism,” Asperger Syndrome, PDD-NOS, Rett Syndrome, and Childhood Disintegrative Disorder are included. This will underscore that appropriate services should be provided to all children on the autism spectrum, and also avoid the pitfalls of mislabeling or denial of eligibility for FAPE.

Retain the specific learning disability of dyslexia in the form found in 34 CFR 300.8(10)(i). The proposed revision of the definition of dyslexia is too narrow and by its focus on phonological component of language disregards other components of dyslexia and may result in the denial of appropriate services.

Interpreting services are beneficial for children with disabilities other than deaf and hard-of-hearing. Children with Down Syndrome, apraxia, autism, and other disabilities can benefit from interpreting services. Eliminate disability-specific language so that a broad range of children who need these services can be included.

Retain the child study committee. Elimination of the child study committee may result in missed opportunities for the identification of children with disabilities, which will adversely affect subsequent eligibility for services at an appropriate age. This could set a child up for long-term difficulties in the school setting.

Retain all parental involvement as defined in the current special education regulations, including participation in Functional Behavioral Assessment, parental consent for the termination of services, and involvement in, determination of members of, and notification of changes to the IEP. Parents must also retain all rights outlined in 34 CFR 300.530(e)(1), (2) and (3): Discipline Procedures, in order to ensure that all pertinent information is received and considered, regarding a manifestation determination of a child’s disability.

Address disproportionality concerns by implementing Early Intervening Services found in 34 CFR Part 300.226: “An LEA may not use more than 15 percent of the amount the LEA receives under Part B of the Act for any fiscal year….to develop and implement coordinated, early intervening services…”

Work to address underdiagnosis of the autism spectrum in rural, minority and low-income communities by dedicating funding towards training and other identification measures through the state Child Find infrastructure.

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

2009-05-08T13:26:00.002-04:00

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 Network

Testimony at IACC meeting May 4, 2009

2009-05-08T07:46:00.003-04:00

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

2009-05-05T22:09:00.000-04:00

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

The Autistic Community Mourns the Passing of Alyric

2009-04-27T12:01:00.000-04:00

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.

Autistic People Deserve Equality: Petition to Tony Attwood and Isabelle Hénault

2009-04-21T15:51:00.002-04:00

The Autistic Self Advocacy Network would like your support for our petition calling on Dr. Tony Attwood and Dr. Isabelle Hénault, two psychologists widely known for their writings and presentations in the area of Autism, to disassociate themselves from hate groups such as FAAAS and ASPIA that seek to encourage discrimination against Autistic people in family law and relationships. These groups promote the pseudoscientific concept of Cassandra Affective Deprivation Disorder, which is based on a prejudiced and scientifically unsupported claim that romantic involvement with an Autistic person causes a depressive disorder, and falsely claim that Autistics and people with neurological disabilities are likely to be violent and abusive in family relationships. Such stereotypes, which have caused people with disabilities to be deprived of parental rights and discriminated against in divorce and child custody cases, have no place in our society.

Drs. Attwood and Hénault, who have been regular presenters at Cassandra-related events over the past decade, currently are serving as members of the FAAAS Professional Advisory Panel. Their association with Cassandra hate groups threatens the civil rights of Autistic people and others with disabilities. Please join us in signing this petition to help secure the rights of all people to be treated equally under the law. If you also wish to send e-mails directly, tony@tonyattwood.com.au is the e-mail address for Dr. Attwood and ihenault@internet.uqam.ca is the e-mail address for Dr. Hénault. Also, here is a link to a statement by ASAN President Ari Ne'eman asking the community to sign the petition to Dr. Tony Attwood and Dr. Isabelle Hénault. Your support in ending stereotypes and discrimination is very much appreciated.

ASAN Group for Autistic Teens

2009-04-20T08:44:00.001-04:00

ASAN 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

2009-04-17T09:06:00.000-04:00

ASAN worked with the Dan Marino Foundation and Kent Creative to develop the following autism PSA. Take a look, tell us what you think and please spread the word with blogs and outreach.

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

Go to 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

2009-03-14T10:01:00.002-04:00

"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

2009-03-14T09:59:00.001-04:00

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

JLARC autism study-ASAN comments

2008-12-31T14:10:00.000-05:00

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

2008-11-14T16:04:00.001-05:00

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 Street
Falls Church, VA 22046
Contact: Nancy Mercer, Executive Director
Email: 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 Virginia
2025 E. Main Street, Suite 107
Richmond, VA 23223
Contact: 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 Coordinator
Email: pdurbinwestby@gmail.com

Autism Society of American – Central Virginia
P.O. Box 29364
Richmond, 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, #11
Dale City, VA 22193
Contact: 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 23502
Contact: 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 Living
205-B South Liberty Street
Harrisonburg, VA 22801
Contact: Marcia DuBois, Executive Director
Email: vail@govail.org

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

Virginia Office for Protection and Advocacy
1910 Byrd Avenue, Suite 5
Richmond, VA 23230
Contact person: Julie Kegley, Staff Attorney
Email: Julie.Kegley@vopa.virginia.gov

ASAN Coalition Comments on Stategic Plan

2008-10-01T22:07:00.000-04:00

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
www.taaproject.com

Compiled by ASAN Board Member Paula C. Durbin-Westby

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

2008-09-18T16:31:00.001-04:00

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

2008-09-16T11:29:00.000-04:00

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

2008-09-14T21:29:00.001-04:00

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

2008-09-12T22:57:00.003-04:00

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 Urges Self-Advocactes to Write Comments to the IACC

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

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

2008-08-22T08:18:00.000-04:00

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

Autistic Self Advocacy Network, Northern Virginia

2008-08-14T13:19:00.000-04:00

Autistic Self Advocacy Network, Northern Virginia