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.
Sunday, October 17, 2010
Wednesday, October 6, 2010
Exclusive: First Autistic Presidential Appointee Speaks Out
http://www.wired.com/wiredscience/2010/10/exclusive-ari-neeman-qa/all/1
First Autistic Presidential Appointee Speaks Out
Excellent article by Steve Silberman of Wired Magazine.
First Autistic Presidential Appointee Speaks Out
Excellent article by Steve Silberman of Wired Magazine.
Wednesday, July 14, 2010
ASAN Northern Virginia Chapter meeting
ASAN Northern Virginia will be holding a meeting on July 17.
Here is an announcement and introduction from chapter leader Samantha Bodwell:
I would like to introduce myself, I am Samantha Bodwell. I am happy to be the new Northern Virginia (Washington, DC Area) Chapter Leader and excited to form a great group, I hope to meet lots of interesting people in the process. I am a Northern Virginia native, who was diagnosed on the spectrum over a year ago and have been actively self-advocating since. I have designed a Meetup page in order to get our group up and running.
http://www.meetup.com/asanwashingtondcmetro/
I look forward to working with our great blogger Paula, who has happily consented to carry on her post.
Our first get together will be on Saturday July 17th, Board Games at Borders, please visit the Meetup page and join the group for further details. Can't wait to meet everyone, see you soon!
Here is an announcement and introduction from chapter leader Samantha Bodwell:
I would like to introduce myself, I am Samantha Bodwell. I am happy to be the new Northern Virginia (Washington, DC Area) Chapter Leader and excited to form a great group, I hope to meet lots of interesting people in the process. I am a Northern Virginia native, who was diagnosed on the spectrum over a year ago and have been actively self-advocating since. I have designed a Meetup page in order to get our group up and running.
http://www.meetup.com/asanwashingtondcmetro/
I look forward to working with our great blogger Paula, who has happily consented to carry on her post.
Our first get together will be on Saturday July 17th, Board Games at Borders, please visit the Meetup page and join the group for further details. Can't wait to meet everyone, see you soon!
Tuesday, June 22, 2010
Senate Confirms Ari Ne'eman's Appointment to National Council on Disability
It's about time!
Some online articles about the appointment:
http://www.disabilityscoop.com/2010/06/22/neeman-confirmation/9133/
Senate Confirms Controversial Autism Self-Advocate To National Disability Council
By Michelle Diament June 22, 2010
After months of delay, the Senate unanimously confirmed Ari Ne’eman on Tuesday to become the first person with autism to serve on the National Council on Disability.
In December President Barack Obama nominated eight new members to the National Council on Disability, which makes recommendations to the president and Congress on disability issues. Early this year, all of the nominations were confirmed except that of Ne’eman, who has autism and is the founder of the Autistic Self-Advocacy Network.
The reason: one or more members of the Senate placed an anonymous hold on the nomination, preventing the full Senate from considering it.
Speculation swirled about the reason for the hold, with some suggesting that Ne’eman’s sometimes divisive views on autism could have been behind the delay. In particular, Ne’eman’s belief that autism should not be cured, but instead should be accepted and accommodated has drawn ire from parents of some individuals who are more adversely affected by the disorder.
As secretively as the hold was placed, however, it was lifted Tuesday morning when Senators voted unanimously to confirm the post along with at least 63 other nominations.“I’m very pleased to have been confirmed by the U.S. Senate and I look forward to taking my oath as a member of the National Council on Disability and to get down to work,” Ne’eman told Disability Scoop.
The confirmations come after news earlier this week that Sen. Claire McCaskill, D-Mo., secured the votes to change the Senate rules to bar holds from being placed anonymously.
--
Another post on Kev Leitch's blog:
http://leftbrainrightbrain.co.uk/2010/06/ari-neeman-appointed-to-national-council-on-disability/
Some online articles about the appointment:
http://www.disabilityscoop.com/2010/06/22/neeman-confirmation/9133/
Senate Confirms Controversial Autism Self-Advocate To National Disability Council
By Michelle Diament June 22, 2010
After months of delay, the Senate unanimously confirmed Ari Ne’eman on Tuesday to become the first person with autism to serve on the National Council on Disability.
In December President Barack Obama nominated eight new members to the National Council on Disability, which makes recommendations to the president and Congress on disability issues. Early this year, all of the nominations were confirmed except that of Ne’eman, who has autism and is the founder of the Autistic Self-Advocacy Network.
The reason: one or more members of the Senate placed an anonymous hold on the nomination, preventing the full Senate from considering it.
Speculation swirled about the reason for the hold, with some suggesting that Ne’eman’s sometimes divisive views on autism could have been behind the delay. In particular, Ne’eman’s belief that autism should not be cured, but instead should be accepted and accommodated has drawn ire from parents of some individuals who are more adversely affected by the disorder.
As secretively as the hold was placed, however, it was lifted Tuesday morning when Senators voted unanimously to confirm the post along with at least 63 other nominations.“I’m very pleased to have been confirmed by the U.S. Senate and I look forward to taking my oath as a member of the National Council on Disability and to get down to work,” Ne’eman told Disability Scoop.
The confirmations come after news earlier this week that Sen. Claire McCaskill, D-Mo., secured the votes to change the Senate rules to bar holds from being placed anonymously.
--
Another post on Kev Leitch's blog:
http://leftbrainrightbrain.co.uk/2010/06/ari-neeman-appointed-to-national-council-on-disability/
Saturday, May 1, 2010
ASAN Comments at IACC Meeting April 30, 2010
I gave these comments at the IACC meeting on April 30, 2010.
---
April 30, 2010
Thank you for the opportunity to comment. I am Paula Durbin-Westby. I am on the Board of Directors of the Autistic Self Advocacy Network. On behalf of ASAN, I would like to welcome the new members of the Interagency Autism Coordinating Committee.
The Autistic Self Advocacy Network is the leading organization run exclusively by individuals who are on the autism spectrum. We count among our supporters people on the autism spectrum, parents of children, teens and adults on the spectrum, educators, and practicing professionals.
For those new IACC members who are not aware of ASAN’s priorities for the Interagency Autism Coordinating Committee, I am going to list the priorities we have brought to the IACC over the past several years. I do have one item that I am crossing off my list- for now- “Add another autistic individual to the IACC,” one with a point of view emphasizing acceptance of disability and a proactive stance toward services and supports. It is also critical to have people who have a disability to be involved at all levels of policymaking. I am pleased that the IACC has realized the wisdom of adding additional autistic members, and also, as a committee with multiple members on the spectrum, I urge you to adopt strategies that steer away from the language of “burden” and “sadness” and move toward a more positive stance and appropriately objective language.
ASAN’s other priorities are:
Focus funding toward research and practices that will have practical benefit for people on the autism spectrum, our families, friends and communities.
Focus on services for people on the spectrum throughout the lifespan, including adults, underserved populations such as ethnic minorities, women on the spectrum, people who do not use language-based forms of communication, and others.
Redirect research attention toward developing functional communication systems, through developing and making accessible Alternative and Augmentative Communication systems and individualizing communication systems so that each autistic person can have the most accessible means of communicating. As an adjunct to this, make IACC meetings and materials accessible to people with a wide range of disabilities, both physical accommodations, communication differences, intellectual, cognitive, and developmental accommodations.
Focus away from a fixation on “causes” and “cures,” especially when these research focuses, on a variety of genetic/genomic differences, and various biomarkers for autism, have the potential to bring about a eugenics focus, or the selection out of the “gene pool”, of a certain subset of the American population. Keep eugenics out of autism research.
Ethical concerns must be kept foremost and the ethical concerns need not stop with the concern about how to transmit notions of “risk” during pregnancy. Ethical issues should also be addressed when researching medical and pharmaceutical treatments may, behavioral interventions, also often known by a simpler term- education-, that, without careful consideration of unintended consequences, be physically, psychologically, or emotionally harmful to the individuals receiving these treatments. All such research and subsequent practice must be rigorously monitored so that the health and well-being of the individual person on the autism spectrum is the first priority. In some cases, as Ari pointed out during the DSM-5 discussion, treatments and interventions will be contraindicated. In others, respectful and thoughtful strategies can be used. [note: There was a presentation by Susan Swedo of the DSM-5 Working Group earlier in the day]
Those researchers who work in close consultation with, and call on the expertise of, those of us living on the autism spectrum, in areas of development, interpretation, implementation, and evaluation, are the researchers who will be most likely to make advances that will directly impact the lives of autistic people in a positive way.
In closing, I am going to quote from Ari Ne’eman’s testimony at the November 30, 2007 IACC meeting. “We encourage this Committee to take the first steps towards shifting the main buzzword about autism from “cure” to “communication” and ultimately, to moving the dialogue about the autism spectrum to one of acceptance, inclusion and, above all, respect.”
Thank you.
---
April 30, 2010
Thank you for the opportunity to comment. I am Paula Durbin-Westby. I am on the Board of Directors of the Autistic Self Advocacy Network. On behalf of ASAN, I would like to welcome the new members of the Interagency Autism Coordinating Committee.
The Autistic Self Advocacy Network is the leading organization run exclusively by individuals who are on the autism spectrum. We count among our supporters people on the autism spectrum, parents of children, teens and adults on the spectrum, educators, and practicing professionals.
For those new IACC members who are not aware of ASAN’s priorities for the Interagency Autism Coordinating Committee, I am going to list the priorities we have brought to the IACC over the past several years. I do have one item that I am crossing off my list- for now- “Add another autistic individual to the IACC,” one with a point of view emphasizing acceptance of disability and a proactive stance toward services and supports. It is also critical to have people who have a disability to be involved at all levels of policymaking. I am pleased that the IACC has realized the wisdom of adding additional autistic members, and also, as a committee with multiple members on the spectrum, I urge you to adopt strategies that steer away from the language of “burden” and “sadness” and move toward a more positive stance and appropriately objective language.
ASAN’s other priorities are:
Focus funding toward research and practices that will have practical benefit for people on the autism spectrum, our families, friends and communities.
Focus on services for people on the spectrum throughout the lifespan, including adults, underserved populations such as ethnic minorities, women on the spectrum, people who do not use language-based forms of communication, and others.
Redirect research attention toward developing functional communication systems, through developing and making accessible Alternative and Augmentative Communication systems and individualizing communication systems so that each autistic person can have the most accessible means of communicating. As an adjunct to this, make IACC meetings and materials accessible to people with a wide range of disabilities, both physical accommodations, communication differences, intellectual, cognitive, and developmental accommodations.
Focus away from a fixation on “causes” and “cures,” especially when these research focuses, on a variety of genetic/genomic differences, and various biomarkers for autism, have the potential to bring about a eugenics focus, or the selection out of the “gene pool”, of a certain subset of the American population. Keep eugenics out of autism research.
Ethical concerns must be kept foremost and the ethical concerns need not stop with the concern about how to transmit notions of “risk” during pregnancy. Ethical issues should also be addressed when researching medical and pharmaceutical treatments may, behavioral interventions, also often known by a simpler term- education-, that, without careful consideration of unintended consequences, be physically, psychologically, or emotionally harmful to the individuals receiving these treatments. All such research and subsequent practice must be rigorously monitored so that the health and well-being of the individual person on the autism spectrum is the first priority. In some cases, as Ari pointed out during the DSM-5 discussion, treatments and interventions will be contraindicated. In others, respectful and thoughtful strategies can be used. [note: There was a presentation by Susan Swedo of the DSM-5 Working Group earlier in the day]
Those researchers who work in close consultation with, and call on the expertise of, those of us living on the autism spectrum, in areas of development, interpretation, implementation, and evaluation, are the researchers who will be most likely to make advances that will directly impact the lives of autistic people in a positive way.
In closing, I am going to quote from Ari Ne’eman’s testimony at the November 30, 2007 IACC meeting. “We encourage this Committee to take the first steps towards shifting the main buzzword about autism from “cure” to “communication” and ultimately, to moving the dialogue about the autism spectrum to one of acceptance, inclusion and, above all, respect.”
Thank you.
Friday, February 19, 2010
URGENT—ACT TO STOP DEEP CUTS IN DISABILITY SERVICES—CONTACT LEGISLATORS TODAY!
February 19, 2010
From Doris Ray (ECNV)
URGENT—ACT TO STOP DEEP CUTS IN DISABILITY SERVICES—CONTACT LEGISLATORS TODAY!
YOU MUST ACT TODAY!! –
In the next two days, the Virginia General Assembly’s money committees will make final decisions on the state budget for FY’2011-2012. In December, outgoing Virginia Governor Timothy M. Kaine presented the General Assembly with a proposed state budget for the next two years. It contained significant cuts to Virginia’s Medicaid Home and Community-Based Waivers Program, including a yearlong freeze on admissions to 5 of the 7 waivers. It also included an 8% cut in the Department of Rehabilitative Services (DRS) Personal Assistance Services (PAS) Program.
Additionally, Medicaid waiver provider reimbursements, including the salaries of personal assistants, respite workers, and companions would be cut by 5%.
As a result of YOUR ADVOCACY, state legislators were considering restoring some of these proposed cuts and offered their own budget amendments to do that.
Yesterday, Governor Robert F. McDonnell presented state legislators with a list of additional budget cuts that he would like the General Assembly to adopt. These proposed budget reductions would significantly cut, and in some cases, eliminate, services vital to the independence, self-sufficiency, and community integration of Virginians with disabilities! He said that these cuts are necessary to balance the state budget, but he also said that he would not entertain raising taxes or doing away with the personal property (car) tax relief program to raise revenues to prevent deep budget cuts.
Governor McDonnell’s recommendations for additional budget cuts include ---
· Elimination of consumer-directed personal assistance, respite and companion services from Virginia’s Medicaid Home and Community-Based (HCBS) Waivers. (A new cut proposed by Governor McDonnell, it is expected to reduce the budget by $62.9 million ) Individuals and families would no longer be able to hire and fire their own attendants. Instead, they would either have to use home health agencies, which are notoriously unreliable, or be forced into nursing homes or other institutions.
· Reduction of the financial eligibility threshold for Medicaid long term care services (both waivers and institutional placement) from 300% of the monthly Supplemental Security Income (SSI) check to 250% of SSI. Those with higher social security/retirement checks, for example, or those attempting to return to work, but who rely on waivers in order to afford personal assistance, would have their services curtailed. This budget recommendation notes that those in institutions will not be in jeopardy because they can simply spend-down in order to continue to receive Medicaid.
· Cuts of 25% in the Virginia Department of Rehabilitative Services (DRS) Personal Assistance Services (PAS) Program for FY 2011 and 50% in FY 2012. DRS PAS helps those not eligible for Medicaid waivers. A significant number of people would lose services, have to quit jobs, and could be forced into institutions.· Additional reductions in state funding (beyond the 10% cut proposed in Governor Kaine’s budget) for adult in-home chore and companion services provided by local government departments of social services. These services provide an alternative for those needing help with activities of daily living, e.g., bathing, dressing and meal preparation, and who are not eligible for Medicaid waiver or DRS PAS services. The bad economy may force local governments to cut these services or impose waiting lists, especially with significant reductions in state funding.
· Elimination of the Department of the Blind and Vision Impaired, the Department for the Deaf and Hard of Hearing, and the Virginia Board for People with Disabilities. This recommendation was advanced without consultation with the consumers who will have their services impacted. Additionally, the DRS budget would be reduced by 5%.
These are only a few of the myriad of cuts in health and human services proposed by the McDonnell Administration.In the next two days, the members of the Senate Finance and House Appropriations Committees will consider all of the recommendations regarding the biennium budget and issue their final recommendations on Sunday, February 21.
YOU MUST ACT NOW TO PREVENT DEVASTATING CUTS to PROGRAMS AND SERVICES THAT ARE VITAL TO VIRGINIANS WITH DISABILITIES!!
If YOU, or someone you care about, receives Medicaid waiver consumer-directed personal assistance, respite, or companion services, tell legislators how important these services are to YOU! Remind them that it cost far less to provide Medicaid home and community-based waiver services. In fact, data that Virginia’s Department of Medical Assistance Services (DMAS) provides to the federal government demonstrates that it costs Virginia three times more to keep people in nursing homes and other institutions rather than providing services in one’s own home.
Ask them to reject Governor McDonnell’s proposed cuts because they would force people with disabilities back into nursing homes and other institutions, costing the state more in Medicaid expenditures and in lost human potential! Tell them to restore funding to Medicaid waivers, DRS PAS, and adult in-home and companion services. Tell them it’s a good economic investment for the people served and for the personal assistants who consumers hire and employ. Tell them to restore cuts in attendant salaries also! Senate Finance and House Appropriations members are making their decisions in the next two days!
PLEASE ACT NOW BY CONTACTING THE FOLLOWING LEGISLATORS BY EMAIL OR BY PHONE --
Senator Charles Colgan, Chair of the Senate Finance Committee
district29@senate.virginia.gov, 804-698-7529
Senator Edward Houck, Chair of the Senate Finance Health and Human Resources Subcommittee
district17@senate.virginia.gov, 804-698-7517
Senator Janet Howell (D-Fx), Member Senate Finance Committee
district32@senate.virginia.gov 804-698-7532
Senator Mary Margaret Whipple (D-ARL/Fx), Member Senate Finance Committee
district31@senate.virginia.gov 804-698-7531
Senator Richard Saslaw (D-Fx), Member Senate Finance Committee and Senate Majority Leader
District35@senate.virginia.gov 804-698-7535
Delegate Lacey Putney, Chair of the House Appropriations Committee
DelLPutney@house.virginia.gov, 804-698-1019
Delegate Harvey Morgan, Chair of the House Appropriations Health and Human Resources Subcommittee
DelHMorgan@house.virginia.gov, 804-698-1098
Delegate Robert Brink (D-ARL), Member House Appropriations Committee
DelRBrink@house.virginia.gov 804-698-1048
Delegate Joe T. May (R-LOU), Member House Appropriations Committee
DelJMay@house.virginia.gov 804-698-1033
PLEASE ALSO CONTACT GOVERNOR MCDONNELL – Ask the governor to withdraw his recommendations to eliminate consumer-directed services in the Medicaid waivers. Remind him that Medicaid waiver services are more cost-effective than institutional placements and a good investment for Virginia. Let him know how important it is for consumers to be able to hire and supervise their own caregivers because it results in better quality assurance than using a home health agency. If you use DRS PAS services, let Governor McDonnell know how important those services are for you, and if DRS PAS services help you to stay employed and continue to pay taxes, tell him that!
HERE’S HOW TO CONTACT GOVERNOR MCDONNELL --
Governor Robert McDonnell
www.governor.virginia.gov/TheAdministration/contactGovernor.cfm
804-786-2211
THANKS FOR TAKING TIME TO CONTACT THE GOVERNOR AND OUR LEGISLATORS!!
Members of the House Appropriations Health and Human Resources Subcommittee
Delegate Harvey Morgan (Chair) -- (804) 698-1098
Delegate Riley E. Ingram--(804) 698-1062
Delegate R. Steven Landes-- (804) 698-1025
Delegate S. Chris Jones -- (804) 698-1076
Delegate John O'Bannon-- (804) 698-1073
Delegate Robert Brink--(804) 698-1048
Delegate Onzlee Ware-- (804) 698-1011
Delegate Rosalyn Dance-- (804) 698-1063
Members of the Senate Finance Health and Human Resources Subcommittee
Senator Edd Houck (Chairman)-- (804) 698-7517
Senator Mary Margaret Whipple--(804) 698-7531
Senator Janet Howell-- (804) 698-7532
Senator William Wampler-- (804) 698-7540
Senator Henry Marsh-- (804) 698-7516
Senator Yvonne Miller-- (804) 698-7505
Senator Emmet Hanger -- (804) 698-7524
From Doris Ray (ECNV)
URGENT—ACT TO STOP DEEP CUTS IN DISABILITY SERVICES—CONTACT LEGISLATORS TODAY!
YOU MUST ACT TODAY!! –
In the next two days, the Virginia General Assembly’s money committees will make final decisions on the state budget for FY’2011-2012. In December, outgoing Virginia Governor Timothy M. Kaine presented the General Assembly with a proposed state budget for the next two years. It contained significant cuts to Virginia’s Medicaid Home and Community-Based Waivers Program, including a yearlong freeze on admissions to 5 of the 7 waivers. It also included an 8% cut in the Department of Rehabilitative Services (DRS) Personal Assistance Services (PAS) Program.
Additionally, Medicaid waiver provider reimbursements, including the salaries of personal assistants, respite workers, and companions would be cut by 5%.
As a result of YOUR ADVOCACY, state legislators were considering restoring some of these proposed cuts and offered their own budget amendments to do that.
Yesterday, Governor Robert F. McDonnell presented state legislators with a list of additional budget cuts that he would like the General Assembly to adopt. These proposed budget reductions would significantly cut, and in some cases, eliminate, services vital to the independence, self-sufficiency, and community integration of Virginians with disabilities! He said that these cuts are necessary to balance the state budget, but he also said that he would not entertain raising taxes or doing away with the personal property (car) tax relief program to raise revenues to prevent deep budget cuts.
Governor McDonnell’s recommendations for additional budget cuts include ---
· Elimination of consumer-directed personal assistance, respite and companion services from Virginia’s Medicaid Home and Community-Based (HCBS) Waivers. (A new cut proposed by Governor McDonnell, it is expected to reduce the budget by $62.9 million ) Individuals and families would no longer be able to hire and fire their own attendants. Instead, they would either have to use home health agencies, which are notoriously unreliable, or be forced into nursing homes or other institutions.
· Reduction of the financial eligibility threshold for Medicaid long term care services (both waivers and institutional placement) from 300% of the monthly Supplemental Security Income (SSI) check to 250% of SSI. Those with higher social security/retirement checks, for example, or those attempting to return to work, but who rely on waivers in order to afford personal assistance, would have their services curtailed. This budget recommendation notes that those in institutions will not be in jeopardy because they can simply spend-down in order to continue to receive Medicaid.
· Cuts of 25% in the Virginia Department of Rehabilitative Services (DRS) Personal Assistance Services (PAS) Program for FY 2011 and 50% in FY 2012. DRS PAS helps those not eligible for Medicaid waivers. A significant number of people would lose services, have to quit jobs, and could be forced into institutions.· Additional reductions in state funding (beyond the 10% cut proposed in Governor Kaine’s budget) for adult in-home chore and companion services provided by local government departments of social services. These services provide an alternative for those needing help with activities of daily living, e.g., bathing, dressing and meal preparation, and who are not eligible for Medicaid waiver or DRS PAS services. The bad economy may force local governments to cut these services or impose waiting lists, especially with significant reductions in state funding.
· Elimination of the Department of the Blind and Vision Impaired, the Department for the Deaf and Hard of Hearing, and the Virginia Board for People with Disabilities. This recommendation was advanced without consultation with the consumers who will have their services impacted. Additionally, the DRS budget would be reduced by 5%.
These are only a few of the myriad of cuts in health and human services proposed by the McDonnell Administration.In the next two days, the members of the Senate Finance and House Appropriations Committees will consider all of the recommendations regarding the biennium budget and issue their final recommendations on Sunday, February 21.
YOU MUST ACT NOW TO PREVENT DEVASTATING CUTS to PROGRAMS AND SERVICES THAT ARE VITAL TO VIRGINIANS WITH DISABILITIES!!
If YOU, or someone you care about, receives Medicaid waiver consumer-directed personal assistance, respite, or companion services, tell legislators how important these services are to YOU! Remind them that it cost far less to provide Medicaid home and community-based waiver services. In fact, data that Virginia’s Department of Medical Assistance Services (DMAS) provides to the federal government demonstrates that it costs Virginia three times more to keep people in nursing homes and other institutions rather than providing services in one’s own home.
Ask them to reject Governor McDonnell’s proposed cuts because they would force people with disabilities back into nursing homes and other institutions, costing the state more in Medicaid expenditures and in lost human potential! Tell them to restore funding to Medicaid waivers, DRS PAS, and adult in-home and companion services. Tell them it’s a good economic investment for the people served and for the personal assistants who consumers hire and employ. Tell them to restore cuts in attendant salaries also! Senate Finance and House Appropriations members are making their decisions in the next two days!
PLEASE ACT NOW BY CONTACTING THE FOLLOWING LEGISLATORS BY EMAIL OR BY PHONE --
Senator Charles Colgan, Chair of the Senate Finance Committee
district29@senate.virginia.gov, 804-698-7529
Senator Edward Houck, Chair of the Senate Finance Health and Human Resources Subcommittee
district17@senate.virginia.gov, 804-698-7517
Senator Janet Howell (D-Fx), Member Senate Finance Committee
district32@senate.virginia.gov 804-698-7532
Senator Mary Margaret Whipple (D-ARL/Fx), Member Senate Finance Committee
district31@senate.virginia.gov 804-698-7531
Senator Richard Saslaw (D-Fx), Member Senate Finance Committee and Senate Majority Leader
District35@senate.virginia.gov 804-698-7535
Delegate Lacey Putney, Chair of the House Appropriations Committee
DelLPutney@house.virginia.gov, 804-698-1019
Delegate Harvey Morgan, Chair of the House Appropriations Health and Human Resources Subcommittee
DelHMorgan@house.virginia.gov, 804-698-1098
Delegate Robert Brink (D-ARL), Member House Appropriations Committee
DelRBrink@house.virginia.gov 804-698-1048
Delegate Joe T. May (R-LOU), Member House Appropriations Committee
DelJMay@house.virginia.gov 804-698-1033
PLEASE ALSO CONTACT GOVERNOR MCDONNELL – Ask the governor to withdraw his recommendations to eliminate consumer-directed services in the Medicaid waivers. Remind him that Medicaid waiver services are more cost-effective than institutional placements and a good investment for Virginia. Let him know how important it is for consumers to be able to hire and supervise their own caregivers because it results in better quality assurance than using a home health agency. If you use DRS PAS services, let Governor McDonnell know how important those services are for you, and if DRS PAS services help you to stay employed and continue to pay taxes, tell him that!
HERE’S HOW TO CONTACT GOVERNOR MCDONNELL --
Governor Robert McDonnell
www.governor.virginia.gov/TheAdministration/contactGovernor.cfm
804-786-2211
THANKS FOR TAKING TIME TO CONTACT THE GOVERNOR AND OUR LEGISLATORS!!
Members of the House Appropriations Health and Human Resources Subcommittee
Delegate Harvey Morgan (Chair) -- (804) 698-1098
Delegate Riley E. Ingram--(804) 698-1062
Delegate R. Steven Landes-- (804) 698-1025
Delegate S. Chris Jones -- (804) 698-1076
Delegate John O'Bannon-- (804) 698-1073
Delegate Robert Brink--(804) 698-1048
Delegate Onzlee Ware-- (804) 698-1011
Delegate Rosalyn Dance-- (804) 698-1063
Members of the Senate Finance Health and Human Resources Subcommittee
Senator Edd Houck (Chairman)-- (804) 698-7517
Senator Mary Margaret Whipple--(804) 698-7531
Senator Janet Howell-- (804) 698-7532
Senator William Wampler-- (804) 698-7540
Senator Henry Marsh-- (804) 698-7516
Senator Yvonne Miller-- (804) 698-7505
Senator Emmet Hanger -- (804) 698-7524
Sunday, February 14, 2010
Virginia: Ask Governor McDonnell to Support Community for All
This urgent action alert is from the ARC of Virginia:
Ask Governor McDonnell to support Community for All
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!
Wednesday, February 3, 2010
Restraint and Seclusion Bill Markup TOMORROW February 4 2010
Legislation Going to Committee: The Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) is going to be marked up by the House Education and Labor Committee this Thursday, Feb. 4th. More phone calls to representatives are needed immediately to keep the legislation strong.
To view the markup session live, tomorrow Feb. 4, 2010 at 11 am, go to http://edlabor.house.gov/markups/2010/02/preventing-harmful-restraint-a.shtml
To contact your legislator and members of the House Education and Labor Committee, go to http://congress.org/ to look up email addresses and/or phone numbers of legislators.
Call your Congressional representative to co-sponsor H.R. 4247.
To find out the names of your Representative, visit http://www.congress.org/ and type in your zip code. The names of your Representatives will be located on the left side of the page under President & Congress.Call the Capitol Switchboard (202) 224-3121 and ask to speak to your representative. You can provide them with your zip code if you do not know his or her name.
Identify yourself as a constituent and the organization that you represent (if any).
If you have a restraint and seclusion story, please give them some of the details so they understand why these bills are so important.
Message: “I am calling to urge (your Representative) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools. HR 4247 is being marked up this Thursday, and your support can help make sure it passes and remains strong. Currently, seventeen states have no protections whatsoever against the use of harmful restraint and seclusion in schools. HR 4247 would create a basic floor of protection and fund teacher training to protect children and keep our schools safe.”
Thank you for your efforts and please keep up the good work! Nothing About Us, Without Us!
To view the markup session live, tomorrow Feb. 4, 2010 at 11 am, go to http://edlabor.house.gov/markups/2010/02/preventing-harmful-restraint-a.shtml
To contact your legislator and members of the House Education and Labor Committee, go to http://congress.org/ to look up email addresses and/or phone numbers of legislators.
Call your Congressional representative to co-sponsor H.R. 4247.
To find out the names of your Representative, visit http://www.congress.org/ and type in your zip code. The names of your Representatives will be located on the left side of the page under President & Congress.Call the Capitol Switchboard (202) 224-3121 and ask to speak to your representative. You can provide them with your zip code if you do not know his or her name.
Identify yourself as a constituent and the organization that you represent (if any).
If you have a restraint and seclusion story, please give them some of the details so they understand why these bills are so important.
Message: “I am calling to urge (your Representative) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools. HR 4247 is being marked up this Thursday, and your support can help make sure it passes and remains strong. Currently, seventeen states have no protections whatsoever against the use of harmful restraint and seclusion in schools. HR 4247 would create a basic floor of protection and fund teacher training to protect children and keep our schools safe.”
Thank you for your efforts and please keep up the good work! Nothing About Us, Without Us!
Monday, February 1, 2010
Virginia Autism Insurance Bills, Feb. 2, 2010
The VA autism insurance bill/s died in committee yesterday.
The post about the VA autism insurance bills, HB 34 and HB 303 can now be viewed, in their entirety, at:
http://paulacdurbinwestbyautisticblog.blogspot.com/2010/02/virginia-autism-insurance-bills.html
The post about the VA autism insurance bills, HB 34 and HB 303 can now be viewed, in their entirety, at:
http://paulacdurbinwestbyautisticblog.blogspot.com/2010/02/virginia-autism-insurance-bills.html
Saturday, January 16, 2010
Restraint and Seclusion National Call-In Day Thursday January 21
http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=104
Dear Friends, Advocates and Community Members,
In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT).
This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress -- please distribute this announcement widely.
WHAT YOU CAN DO:
Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.
• To find out the names of your US Senators and Representative, click here (link to http://www.congress.org/)
• Ask for the offices of your US Senators and Representative
• Ask to speak to the person working on education issues
• Identify yourself as a constituent and the organization that you represent (if any)
Message: “ I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”
Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”
Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment.
Please call on January 21, 2010 and tell your friends and family to join you.
If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.
Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition
Dear Friends, Advocates and Community Members,
In one week, Congress will come back in session. The Autistic Self Advocacy Network (ASAN), in conjunction with the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), is asking you to join us in a National Call-In Day on Thursday, January 21st to tell your members of Congress to support the Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247/S.2860) introduced last month by Representatives George Miller (D-CA) and Cathy McMorris-Rodgers (R-WA) and Senator Chris Dodd (D-CT).
This legislation would provide students with and without disabilities vital protections against abuse in schools. We are providing details on how to contact your members of Congress -- please distribute this announcement widely.
WHAT YOU CAN DO:
Please call this coming Thursday and encourage your friends, family and coworkers to participate by dialing the Capitol Switchboard at 202-224-3121 and asking for your Congressional representative to Co-Sponsor H.R. 4247, and your senators to Co-Sponsor S. 2860.
• To find out the names of your US Senators and Representative, click here (link to http://www.congress.org/)
• Ask for the offices of your US Senators and Representative
• Ask to speak to the person working on education issues
• Identify yourself as a constituent and the organization that you represent (if any)
Message: “ I am calling to urge (Senator y) to cosponsor S.2860, legislation preventing harmful use of restraint and seclusion in schools.”
Message: “I am calling to urge (Representative z) to cosponsor HR 4247, legislation preventing harmful use of restraint and seclusion in schools.”
Thanks for your advocacy. Increasing congressional support for these bills will help move them through the legislative process towards enactment.
Please call on January 21, 2010 and tell your friends and family to join you.
If you are interested in doing more, please e-mail us at info@autisticadvocacy.org for information about how you can arrange a meeting with your representatives to explain why this bill is essential or visit www.tash.org/aprais to learn more.
Regards,
The Autistic Self Advocacy Network and the APRAIS Coalition
Wednesday, January 13, 2010
Note on Comment Moderation
I have tried to set this blog to not accept comments, but some problem with the settings is keeping me from doing so. Usually I remember to disable comments for a particular post but when I forget, comments come in and I reject them. The reason for rejecting has nothing to do with your comment and everything to do with the fact that I can't keep up with comments and respond due to limits on my time and energy. I do read all the comments I receive, but I don't post them. Perhaps in the future I will but at this point it is something I can't do. - Paula Durbin-Westby
Tuesday, January 12, 2010
ASAN-VA comments at General Assembly budget hearing
January 11, 2010
ASAN Comments at Virginia General Assembly Budget Hearing
I’m Paula Durbin-Westby. I am representing the Virginia chapter of the Autistic Self Advocacy Network, the leading autism advocacy organization whose leadership is made up of individuals who are on the autism spectrum.
First, a thank you to all the members of the General Assembly for your efforts to work with Governor Kaine’s budget constraints in this time of economic upheaval.
State policy for 40 years has called for Virginia to shift from institutions to community supports for persons with intellectual and developmental disabilities. Now, Virginia chooses to continue to segregate individuals with these disabilities in state institutions, and seems to be making a choice to reverse those gains which have been made over the past few decades.
In trying to explain institutions to my young son, he asked “Are they like big warehouses where people store stuff?” For many of us, both people with disabilities and our families, the answer is an unfortunate “Yes.”
People with disabilities and our families have repeatedly requested “A Life Like Yours,” and the statistics are there to show that there are cost-effective community-based solutions to institutionalization.
At a time when massive cuts to much-needed services are being proposed, building yet another bricks-and-mortar “solution” is unconscionable. Rather than investing in another “warehouse”, the State of Virginia should divert funding away from what is essentially a big construction project, and toward the human services, community services, medical and support services that people with disabilities, and our families and communities, need. 6000 people waiting for waivers? Respite care slashed from 720 hours per year to one third that amount? Or, less than an hour of respite in a 24-hour day. This sort of decisionmaking will force even more Virginia families into warehousing their loved ones, and into financial and personal disaster.
In addition, Virginia does have responsibilities under the Americans with Disabilities Act and the 1999 Supreme Court decision Olmstead v. L.C.
As Assistant Attorney General for Civil Rights, Tom Perez, said in his recent installation speech: "Segregating people with disabilities in institutions is every bit as bad and illegal as segregating children of color in inferior schools."
In the name of human dignity and civil rights for all people, including people with disabilities, the Autistic Self Advocacy Network calls on Virginia to honor its stated commitment to include Virginians with developmental and intellectual disabilities, in our own homes, our own communities, from which many of us are now excluded, and Virginia society as a whole.
Thank you for taking the time to consider this urgent matter.
Paula C. Durbin-Westby
Board of Directors
Virginia Coordinator
Autistic Self Advocacy Network
ASAN Comments at Virginia General Assembly Budget Hearing
I’m Paula Durbin-Westby. I am representing the Virginia chapter of the Autistic Self Advocacy Network, the leading autism advocacy organization whose leadership is made up of individuals who are on the autism spectrum.
First, a thank you to all the members of the General Assembly for your efforts to work with Governor Kaine’s budget constraints in this time of economic upheaval.
State policy for 40 years has called for Virginia to shift from institutions to community supports for persons with intellectual and developmental disabilities. Now, Virginia chooses to continue to segregate individuals with these disabilities in state institutions, and seems to be making a choice to reverse those gains which have been made over the past few decades.
In trying to explain institutions to my young son, he asked “Are they like big warehouses where people store stuff?” For many of us, both people with disabilities and our families, the answer is an unfortunate “Yes.”
People with disabilities and our families have repeatedly requested “A Life Like Yours,” and the statistics are there to show that there are cost-effective community-based solutions to institutionalization.
At a time when massive cuts to much-needed services are being proposed, building yet another bricks-and-mortar “solution” is unconscionable. Rather than investing in another “warehouse”, the State of Virginia should divert funding away from what is essentially a big construction project, and toward the human services, community services, medical and support services that people with disabilities, and our families and communities, need. 6000 people waiting for waivers? Respite care slashed from 720 hours per year to one third that amount? Or, less than an hour of respite in a 24-hour day. This sort of decisionmaking will force even more Virginia families into warehousing their loved ones, and into financial and personal disaster.
In addition, Virginia does have responsibilities under the Americans with Disabilities Act and the 1999 Supreme Court decision Olmstead v. L.C.
As Assistant Attorney General for Civil Rights, Tom Perez, said in his recent installation speech: "Segregating people with disabilities in institutions is every bit as bad and illegal as segregating children of color in inferior schools."
In the name of human dignity and civil rights for all people, including people with disabilities, the Autistic Self Advocacy Network calls on Virginia to honor its stated commitment to include Virginians with developmental and intellectual disabilities, in our own homes, our own communities, from which many of us are now excluded, and Virginia society as a whole.
Thank you for taking the time to consider this urgent matter.
Paula C. Durbin-Westby
Board of Directors
Virginia Coordinator
Autistic Self Advocacy Network
Thursday, December 17, 2009
Ari Ne'eman named nominee to National Council on Disability
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.
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.
Wednesday, November 11, 2009
IACC Comments, November 10, 2009
November 10, 2009
Thank you for this opportunity to comment on updating the IACC Strategic Plan. I am representing the Autistic Self Advocacy Network.
My comments on October 23 focused on ethical issues, concerns about the appropriateness of early intervention and associated research, permissions for acquisition of biological materials, and the IACC’s recommended budget being skewed severely in favor of research into “causes and prevention” rather than practical and appropriate interventions, such as improvements in educational interventions, services and supports.
I have had an opportunity, through the IACC Scientific Workshop Panel process, to make some language changes and suggestions that should apply throughout the Strategic Plan. Since I was on Panel 1, “When Should I Be Concerned?” I will use that section of the 2009 Strategic Plan as an example of changes ASAN would like to see incorporated throughout the entire 2010 Plan:
Many of these changes reflect either more accurate and useful terminology or more respectful language that does not introduce an undertone of disrespect, fatalism, or excess pathologizing of autism.
Anywhere the term “high risk” is used to characterize the likelihood of siblings also being on the autism spectrum, the language should be changed to just that: “high likelihood” rather than “high risk.”
“Abnormal” should be changed to “atypical,” as we have done for the Panel 1 final document.
Anywhere interventions are mentioned, the use of the qualifier “appropriate” should be inserted, addressing our community’s concerns about “intervention for the sake of intervention,” and especially in the light of the obvious disregard of and dismissal of autistic input into the research process to date.
Rather than “early warning signs,” we strongly suggest “early indicators,” which is more scientifically accurate and does not introduce negative value judgments into identifying indicators of autism or atypical development.
Instead of “symptoms,” “characteristics” and “conditions” are more appropriate, since autism is not a disease process but a neurobiological difference.
The use of the term, and concept of “severity,” is questionable for several reasons. First, “severity” is often contextual, over both time and other things like situation and location. What is being looked at when using the “severity” criterion is how “observable” the autistic characteristic is. Whether or not a characteristic is observable and to what degree does not necessarily correlate with other aspects of the person. Again, the focus needs to be on improving the quality of life and not on reducing autistic traits. For this reason we prefer the term “variability,” which indicates that both abilities and disabilities can be present in the same person, and that abilities and disabilities can change over time, whether permanently, or temporarily, in the presence of other factors, such as external environment. “Variability” refers to variability of autistic traits. Where the concept of “severity” is used it must be tempered with research into autistic strengths and also neutral, but autistic, characteristics.
I have made another language change, from “pathology” to “differences in neurobiology and cognition,” which is more specific and avoids the concept that all autistic differences are pathological. Many of them are not.
I have rewritten the first section of the Strategic Plan, with its three sub-questions, to read:
“When Should I Be Concerned?”
-“What are the Early Indicators of ASD?” (rather than “What are the early warning signs?”)
-“Are there typical characteristics that are part of an ASD diagnosis?” (I left that the same, since you already used “characteristics”, which is the preferred term.)
-How much variation is there in characteristics and pattern of abilities and disabilities (over time and depending on context)?”
In addition, undue focus should not be placed on “losing symptoms” of autism, without qualifying language indicating that the “loss” could be due to learning of skills, and certainly should not indicate, at this early stage in research, that these research subjects have become non-autistic. Especially in the light of reports that many of the subjects still retained co-occurring symptoms often found in autistics, such as OCD, anxiety, ADHD, etc., the public should not be encouraged to think that “loss of autistic symptoms” is “loss of autism.” I have changed the sentence in Panel 1’s draft to: “Finally, evidence is emerging that some children ‘lose’ explicit characteristics of ASD although it is not clear whether that loss of autistic characteristics is permanent throughout the lifespan, or whether it reflects “learning skills” rather than “losing characteristics.”
I have reformulated one of the Research Opportunities to: “Inclusion of bioethical and other ethical considerations into the diagnosis and screening process, including but not limited to consideration of the implications of genetic testing and detection of maternal antibodies. Maternal antibodies is an emerging area of concern for us which is reflected nowhere in the current Plan or suggested revisions.
NIMH and other grant-making institutions should not fund research that uses or promotes the use of restraints, aversives, and seclusion. There is a growing movement in society away from the use of these draconian measures, reflected in current legislative efforts to ban their use. Restraints, aversives and seclusion are used disproportionately against people with disabilities, including autism and other developmental, intellectual, and behavioral disabilities. In no case should researchers applying for grants to study restraints and aversives, either to further their use or to legitimize that use, be allowed access to federal funds, including funds from private/federal partnerships. Research that promotes restraint reduction and elimination should be funded as a high priority in order to keep autistic and people with other disabilities safe.
Research into communication differences must be given higher priority than it was given in the 2009 Strategic Plan. A mere mention of Picture Exchange Communication Systems is not enough, given that PECS does not work for everyone on the spectrum, nor does it address the needs of people who need communications technology and/or systems part-time, as a supplement to speech and/or writing, or the need for systems that are flexible enough to accommodate a wide variety of changing communication needs. It also does not necessarily address the needs of people who use non-language-based communication and/or non-symbol-based systems. Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.
Finally, in order to accomplish the goal of achieving the best possible outcome for all people on the autism spectrum, autistic adults should be consulted and should participate in all levels and tasks of research on autism. Autistic adults with a perspective that focuses away from questionable cures and “elimination” of autism should be given a seat on the Interagency Autism Coordinating Committee. Nothing About Us Without Us.
Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network
Thank you for this opportunity to comment on updating the IACC Strategic Plan. I am representing the Autistic Self Advocacy Network.
My comments on October 23 focused on ethical issues, concerns about the appropriateness of early intervention and associated research, permissions for acquisition of biological materials, and the IACC’s recommended budget being skewed severely in favor of research into “causes and prevention” rather than practical and appropriate interventions, such as improvements in educational interventions, services and supports.
I have had an opportunity, through the IACC Scientific Workshop Panel process, to make some language changes and suggestions that should apply throughout the Strategic Plan. Since I was on Panel 1, “When Should I Be Concerned?” I will use that section of the 2009 Strategic Plan as an example of changes ASAN would like to see incorporated throughout the entire 2010 Plan:
Many of these changes reflect either more accurate and useful terminology or more respectful language that does not introduce an undertone of disrespect, fatalism, or excess pathologizing of autism.
Anywhere the term “high risk” is used to characterize the likelihood of siblings also being on the autism spectrum, the language should be changed to just that: “high likelihood” rather than “high risk.”
“Abnormal” should be changed to “atypical,” as we have done for the Panel 1 final document.
Anywhere interventions are mentioned, the use of the qualifier “appropriate” should be inserted, addressing our community’s concerns about “intervention for the sake of intervention,” and especially in the light of the obvious disregard of and dismissal of autistic input into the research process to date.
Rather than “early warning signs,” we strongly suggest “early indicators,” which is more scientifically accurate and does not introduce negative value judgments into identifying indicators of autism or atypical development.
Instead of “symptoms,” “characteristics” and “conditions” are more appropriate, since autism is not a disease process but a neurobiological difference.
The use of the term, and concept of “severity,” is questionable for several reasons. First, “severity” is often contextual, over both time and other things like situation and location. What is being looked at when using the “severity” criterion is how “observable” the autistic characteristic is. Whether or not a characteristic is observable and to what degree does not necessarily correlate with other aspects of the person. Again, the focus needs to be on improving the quality of life and not on reducing autistic traits. For this reason we prefer the term “variability,” which indicates that both abilities and disabilities can be present in the same person, and that abilities and disabilities can change over time, whether permanently, or temporarily, in the presence of other factors, such as external environment. “Variability” refers to variability of autistic traits. Where the concept of “severity” is used it must be tempered with research into autistic strengths and also neutral, but autistic, characteristics.
I have made another language change, from “pathology” to “differences in neurobiology and cognition,” which is more specific and avoids the concept that all autistic differences are pathological. Many of them are not.
I have rewritten the first section of the Strategic Plan, with its three sub-questions, to read:
“When Should I Be Concerned?”
-“What are the Early Indicators of ASD?” (rather than “What are the early warning signs?”)
-“Are there typical characteristics that are part of an ASD diagnosis?” (I left that the same, since you already used “characteristics”, which is the preferred term.)
-How much variation is there in characteristics and pattern of abilities and disabilities (over time and depending on context)?”
In addition, undue focus should not be placed on “losing symptoms” of autism, without qualifying language indicating that the “loss” could be due to learning of skills, and certainly should not indicate, at this early stage in research, that these research subjects have become non-autistic. Especially in the light of reports that many of the subjects still retained co-occurring symptoms often found in autistics, such as OCD, anxiety, ADHD, etc., the public should not be encouraged to think that “loss of autistic symptoms” is “loss of autism.” I have changed the sentence in Panel 1’s draft to: “Finally, evidence is emerging that some children ‘lose’ explicit characteristics of ASD although it is not clear whether that loss of autistic characteristics is permanent throughout the lifespan, or whether it reflects “learning skills” rather than “losing characteristics.”
I have reformulated one of the Research Opportunities to: “Inclusion of bioethical and other ethical considerations into the diagnosis and screening process, including but not limited to consideration of the implications of genetic testing and detection of maternal antibodies. Maternal antibodies is an emerging area of concern for us which is reflected nowhere in the current Plan or suggested revisions.
NIMH and other grant-making institutions should not fund research that uses or promotes the use of restraints, aversives, and seclusion. There is a growing movement in society away from the use of these draconian measures, reflected in current legislative efforts to ban their use. Restraints, aversives and seclusion are used disproportionately against people with disabilities, including autism and other developmental, intellectual, and behavioral disabilities. In no case should researchers applying for grants to study restraints and aversives, either to further their use or to legitimize that use, be allowed access to federal funds, including funds from private/federal partnerships. Research that promotes restraint reduction and elimination should be funded as a high priority in order to keep autistic and people with other disabilities safe.
Research into communication differences must be given higher priority than it was given in the 2009 Strategic Plan. A mere mention of Picture Exchange Communication Systems is not enough, given that PECS does not work for everyone on the spectrum, nor does it address the needs of people who need communications technology and/or systems part-time, as a supplement to speech and/or writing, or the need for systems that are flexible enough to accommodate a wide variety of changing communication needs. It also does not necessarily address the needs of people who use non-language-based communication and/or non-symbol-based systems. Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.
Finally, in order to accomplish the goal of achieving the best possible outcome for all people on the autism spectrum, autistic adults should be consulted and should participate in all levels and tasks of research on autism. Autistic adults with a perspective that focuses away from questionable cures and “elimination” of autism should be given a seat on the Interagency Autism Coordinating Committee. Nothing About Us Without Us.
Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network
IACC Comments, October 23, 2009
October 23, 2009
http://www.youtube.com/watch?v=IMg0SwYOthw
Thank you for permitting me to address this meeting of the Interagency Autism Coordinating Committee. I am representing the Autistic Self Advocacy Network.
I appreciate having had the opportunity to represent ASAN at the recent Scientific Workshop. The meeting offered many opportunities to make changes as the Strategic Plan is updated for 2010.
Inclusion of an objective to study ethical issues related to “the assessment and communication of genetic, environmental, and clinical risk for autism” was one of the recommendations from Panel 1, the panel I participated in. This objective does not go far enough in that it only addresses assessment and communication of risk. It does not address other ethical issues which we believe to be important. Therefore we strongly urge an objective that would address ethical, legal, and social issues related to all aspects of research, not just the communication of risk, although that is a critical area, given recent developments in identifying prenatal risk factors.
Another area for concern about ethics is early intervention, as interventions are initiated at earlier and earlier ages . Ideas about what early interventions will work are generally based on assumptions of non-autistic people about what “the reasons for autistic behaviors” might be, with little to no input from autistic adults, who can inform and guide research.
A concerted effort is being made to increase acquisition of biological materials, such as skin fibroblasts, brains, and other tissue types. There is an ethical concern with collecting biologic samples from young children, who are not capable of giving permission. Potentially, children might not want to contribute biological material, if one of the purposes was for developing a prenatal test aimed at selecting people like themselves out of the gene pool. Although there are many reasons for collection of biological materials, this concern must be addressed. People on the autism spectrum who can communicate,* (see below) and people with other disabilities such as Down Syndrome, and their families, have advocated against, and continue to advocate against, such an aim.
In general, recommendations of many of the panelists to include adults in many sections of the Strategic Plan are a step in the right direction.
Although the IACC does not fund research, presumably it has some influence on research priorities, or it would not bother to come up with budget recommendations. Here are some figures from the 2009 Strategic Plan.
Recommended budget for diagnosis and assessment: $133,600,000
For biology and risk factor research, $179,000,000. For causes and prevention, $216,400,000 [almost 28% of the IACC recommended budget]. Treatment and intervention gets $190,100,000.
For “Where Can I Turn For Services?” Where, indeed? Not to the IACC recommended budget, which suggests a grand total of $25,330,000 [3.27%]. If research were really funded at the levels recommended by the IACC, that question becomes even more anxiety-provoking for autistics and our families. We will certainly need to turn to avenues other than the IACC for answers to questions about needed services and supports. Research into causes, biomarkers, prevention, etc. will not help people who are alive today and need evidence-based information about services and supports.
Recent research and initiatives in the United Kingdom can provide a model for services-oriented research and also research into adult issues. The National Health Service has released a study of autistic adults, indicating that prevalence of autism in adults in the UK is one in a hundred, similar to the recent figure here of 1 in 91 children. Interestingly, the NHS report avoids alarmist rhetoric and talk of “an epidemic of autism.” In addition, initiatives such as the “Don’t Write Me Off” employment campaign and “Supporting people with autism through adulthood” can make a real difference in the lives of autistics, especially and young people who are transitioning out of school settings. Sadly, the United States is falling behind on crucial issues related to services and lifespan issues and is failing autistic adults, families and communities.
Currently the Strategic Plan does not address communication differences and disabilities at all. This is a surprising omission, since one of the criteria for an autism diagnosis is communication disability. Although panel 4, on treatments and interventions, mentioned communication as an emerging tool, specific mention of communication research should be incorporated into the 2010 Strategic Plan.
*[Note: The comment "people on the spectrum who can communicate is NOT intended to mean that there are autistic people who cannot communicate. Everyone communicates. It's an error I wish I had caught before I delivered the comments, but I am posting the comments as I delivered them.]
*[I explained more carefully what I intended to say, in my November 10, 2009 IACC testimony:
Every person communicates in some form, but that communication is often not well-understood, and to this date, has been under researched. To separate autistics into “verbal” and “non-verbal” categories and leave it at that is to miss a critically important area for research, far surpassing in practical importance the finding of yet another “autism gene” or maternal antibody. The need for all autistics to communicate in ways that others can understand is crucial for our empowerment, life chances, access to basic needs, and for the chance to engage in reciprocal communication with people who do not easily access our various ways of communicating. What do autistics want? Ways of communicating that work for us and that allow us to communicate effectively with a wide range of others. What do parents of autistics want? Ways of communicating with us. A glance at comments online and in news media indicate that more parents are interested in being able to communicate with their autistic children (including adult offspring, who are by no means to be written off) than are interested in what gene/s are responsible for autism.]
Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network
Tuesday, October 20, 2009
Washington DC: ASAN and Allies Protest Autism Speaks, October 31 2009
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/
--
Metro accessibility information:
http://www.wmata.com/accessibility/metrorail.cfm
http://www.wmata.com/rail/maps/find_station.cfm#c30
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/
--
Metro accessibility information:
http://www.wmata.com/accessibility/metrorail.cfm
http://www.wmata.com/rail/maps/find_station.cfm#c30
Thursday, October 15, 2009
ASAN protests Autism Speaks in Boston, October 18
In light of Autism Speaks' draining funds from local communities, lacking representation of autistic people in leadership positions, and repeatedly using inaccurate and stigmatizing language, the New England chapter of the Autistic Self Advocacy Network (ASAN) is planning to protest the Autism Speaks walk in East Boston MA on Sunday, Oct. 18, 2009. The walk will take place at Suffolk Downs, 111 Waldemar Ave., East Boston MA 02128. Protesting begins at 8.45am, registration opens 9am, walk starts 10.30am. Over 60 national, international, and local disability rights organizations have signed onto a joint letter issued by ASAN condemning lack of representation, exploitative and unethical practices by Autism Speaks. The letter and accompanying press release are posted on the ASAN website: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61 http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=60 The Boston protest comes on the heels of a successful ASAN protest at an Autism Speaks walk in Columbus OH on Sunday, Oct. 11, following distribution of flyers by ASAN members at a student involvement fair at Ohio State University. Links below: http://asansouthwestohio.blogspot.com/2009/10/autism-speaks-in-columbus-let-them-eat.html http://asancentralohio.blogspot.com/2009/10/autistic-community-protests-autism.html http://www.youtube.com/watch?v=sUBfyfjIccA http://autisticselfadvocacynetwork-ohio.blogspot.com/2009/09/asan-osu-involvement-fair-activism.html ASAN also protested in Portland OR at an Autism Speaks walk on Saturday, Sept. 26. Local TV stations reported on the protest: http://www.youtube.com/watch?v=jYeZVQu5H3A http://www.youtube.com/watch?v=JxIPqE3DYG4 http://www.youtube.com/watch?v=74I5IdzzAPA If you are interested in attending the protest in Boston, please contact asannewengland AT hotmail DOT com.
Wednesday, October 7, 2009
Press Release: Disability Community Condemns Autism Speaks
For Immediate Release
Contact: Ari Ne’eman, President
Wednesday, October 7th, 2009
The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org or info@autisticadvocacy.org
Disability Community Condemns Autism Speaks
Over 60 organizations condemn lack of representation, exploitative and unethical practices by autism organization
Washington, DC – More than 60 national, international, and local disability rights organizations have signed onto a letter condemning the organization Autism Speaks for exploiting those it purports to help. The letter (attached) will be released on Wednesday, October 7 by the Autistic Self Advocacy Network (ASAN), the leading advocacy organization run by and for Autistic youth and adults speaking for themselves. The letter’s signatories include the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living, and it calls on Autism Speaks' donors, sponsors, and supporters—including Toys ‘R Us, Home Depot, Fox Sports and Lindt Chocolates—to end their support for the organization. The joint letter highlights a pattern of behavior on the part of Autism Speaks beyond any particular instance, but it was instigated following Autism Speaks’ most recent fundraising video, entitled, “I am Autism”.
The disability community reacted in horror to the “I am Autism” campaign, which presents Autistic people as kidnap victims and burdens on their families and local communities.
ASAN held a protest in Portland, Oregon on September 26 that received widespread local press coverage, including segments on the news broadcasts on two local television stations, KPTV-12 (Fox) and KOIN-6 (CBS). Additional protests are being organized for Sunday, October 11 in Columbus, Ohio, and for Sunday, October 18 in Boston, Massachusetts. ASAN is also organizing a large protest at an Autism Speaks-sponsored concert at Carnegie Hall in New York City on Tuesday, November 17. Singer Bruce Springsteen and comedian Jerry Seinfeld are headlining the concert. See the attached Media Advisory for details of these protests.
“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” proclaims the spooky announcer on Autism Speaks’ “I Am Autism” video. Produced by Academy Award-nominated film director Alfonso Cuarón and Grammy award-nominated songwriter/producer Billy Mann, the video premiered at the United Nations World Focus on Autism Conference in front of a collection of dignitaries and First Ladies and was subsequently released online on September 22.
Since then, Autism Speaks has attempted to distance itself from the video, taking it down from its website while continuing to distribute it via YouTube (http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=related).
The joint letter highlights three areas of unethical and exploitative behavior on the part of Autism Speaks:
a) Its damaging and offensive fundraising tactics, which frequently equate being autistic to a fate worse than death
b) The low percentage of money donated to Autism Speaks that goes towards services or support for families and individuals, particularly in light of its high executive salaries
c) The lack of representation of Autistic people themselves in Autism Speaks’ Board of Directors or leadership
“This joint letter sends a clear message to the corporate and philanthropy world that Autism Speaks does not speak for Autistic people or our families,” said Ari Ne’eman, an adult on the autism spectrum and President of ASAN. “The type of fear-mongering and exploitation Autism Speaks engages in hurts Autistic people by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” In addition to relying on arousing fear and pity to raise funds, Autism Speaks’ video repeats frequently referenced claims of higher than average divorce rates among parents of Autistic children. A study conducted in 2008 by Harris Interactive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities.
The video also relies heavily on the idea of rapidly increasing autism rates. Another new study by the British Government’s National Health Service, which was released the same day as the video, found that the autism rate among adults (one percent of the population) is the same as the rate among children. This provides evidence that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.
“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child who lives in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”
“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” wrote Sarah, an Autistic blogger at the blog Cat in a Dog’s World. She added, “Autistic people deserve better than what Autism Speaks has to offer.”
The new video is reminiscent of the December 2007 New York University Child Study Center’s “Ransom Notes” campaign that used fake ransom notes claiming to be from an anthropomorphized disability that had kidnapped a child. After widespread outcry from self-advocates, parents, and professionals and the condemnation of 22 national disability rights organizations, led by ASAN, those ads were withdrawn in just two and half weeks. The Ransom Notes controversy was covered by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post, and other major media outlets. ASAN is working with the cross-disability community on a similar response to Autism Speaks’ campaign.
“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the Board of Directors of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation, and we are taking action.”
About ASAN
The Autistic Self Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people. ASAN seeks to advance the vision of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports, and others, ASAN focuses on organizing the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without Autistic people. Instead, it should be to create a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens.
For more information, visit http://www.autisticadvocacy.org/.
Contact: Ari Ne’eman, President
Wednesday, October 7th, 2009
The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org or info@autisticadvocacy.org
Disability Community Condemns Autism Speaks
Over 60 organizations condemn lack of representation, exploitative and unethical practices by autism organization
Washington, DC – More than 60 national, international, and local disability rights organizations have signed onto a letter condemning the organization Autism Speaks for exploiting those it purports to help. The letter (attached) will be released on Wednesday, October 7 by the Autistic Self Advocacy Network (ASAN), the leading advocacy organization run by and for Autistic youth and adults speaking for themselves. The letter’s signatories include the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living, and it calls on Autism Speaks' donors, sponsors, and supporters—including Toys ‘R Us, Home Depot, Fox Sports and Lindt Chocolates—to end their support for the organization. The joint letter highlights a pattern of behavior on the part of Autism Speaks beyond any particular instance, but it was instigated following Autism Speaks’ most recent fundraising video, entitled, “I am Autism”.
The disability community reacted in horror to the “I am Autism” campaign, which presents Autistic people as kidnap victims and burdens on their families and local communities.
ASAN held a protest in Portland, Oregon on September 26 that received widespread local press coverage, including segments on the news broadcasts on two local television stations, KPTV-12 (Fox) and KOIN-6 (CBS). Additional protests are being organized for Sunday, October 11 in Columbus, Ohio, and for Sunday, October 18 in Boston, Massachusetts. ASAN is also organizing a large protest at an Autism Speaks-sponsored concert at Carnegie Hall in New York City on Tuesday, November 17. Singer Bruce Springsteen and comedian Jerry Seinfeld are headlining the concert. See the attached Media Advisory for details of these protests.
“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” proclaims the spooky announcer on Autism Speaks’ “I Am Autism” video. Produced by Academy Award-nominated film director Alfonso Cuarón and Grammy award-nominated songwriter/producer Billy Mann, the video premiered at the United Nations World Focus on Autism Conference in front of a collection of dignitaries and First Ladies and was subsequently released online on September 22.
Since then, Autism Speaks has attempted to distance itself from the video, taking it down from its website while continuing to distribute it via YouTube (http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=related).
The joint letter highlights three areas of unethical and exploitative behavior on the part of Autism Speaks:
a) Its damaging and offensive fundraising tactics, which frequently equate being autistic to a fate worse than death
b) The low percentage of money donated to Autism Speaks that goes towards services or support for families and individuals, particularly in light of its high executive salaries
c) The lack of representation of Autistic people themselves in Autism Speaks’ Board of Directors or leadership
“This joint letter sends a clear message to the corporate and philanthropy world that Autism Speaks does not speak for Autistic people or our families,” said Ari Ne’eman, an adult on the autism spectrum and President of ASAN. “The type of fear-mongering and exploitation Autism Speaks engages in hurts Autistic people by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” In addition to relying on arousing fear and pity to raise funds, Autism Speaks’ video repeats frequently referenced claims of higher than average divorce rates among parents of Autistic children. A study conducted in 2008 by Harris Interactive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities.
The video also relies heavily on the idea of rapidly increasing autism rates. Another new study by the British Government’s National Health Service, which was released the same day as the video, found that the autism rate among adults (one percent of the population) is the same as the rate among children. This provides evidence that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.
“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child who lives in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”
“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” wrote Sarah, an Autistic blogger at the blog Cat in a Dog’s World. She added, “Autistic people deserve better than what Autism Speaks has to offer.”
The new video is reminiscent of the December 2007 New York University Child Study Center’s “Ransom Notes” campaign that used fake ransom notes claiming to be from an anthropomorphized disability that had kidnapped a child. After widespread outcry from self-advocates, parents, and professionals and the condemnation of 22 national disability rights organizations, led by ASAN, those ads were withdrawn in just two and half weeks. The Ransom Notes controversy was covered by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post, and other major media outlets. ASAN is working with the cross-disability community on a similar response to Autism Speaks’ campaign.
“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the Board of Directors of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation, and we are taking action.”
About ASAN
The Autistic Self Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people. ASAN seeks to advance the vision of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports, and others, ASAN focuses on organizing the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without Autistic people. Instead, it should be to create a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens.
For more information, visit http://www.autisticadvocacy.org/.
"I Am Autism" video: Disability Community Responds to Autism Speaks
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
Wednesday, September 23, 2009
I Am Autism Video: (Autism Speaks Gets It Wrong Again)
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.
“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.
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