More Action Needed on Restraint & Seclusion Bill

The Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) is going to committee Thursday, Feb. 4th. More phone calls to representatives are needed immediately to keep strong protections for students in the legislation. There will be a live webcast from the Education and Labor Committee website at 11:00 am Eastern time.


Hello,

We have just been informed that H.R. 4247, the Preventing Harmful Restraint and Seclusion in Schools Act is going to be marked up by the House Education and Labor Committee this coming Thursday. In order to avoid amendments to the legislation that could potentially weaken the bill's ability to protect students, it is important we send a clear message to Congress to pass H.R. 4247 and to keep it strong. This is a crucial period for the legislation and we're urging all of you to call your Representatives before Thursday to tell them to co-sponsor and support the bill.


WHAT YOU CAN DO:


Call your Congressional representative to co-sponsor H.R. 4247. Encourage your friends, family, and coworkers to participate too!

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 at (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:

For your Representative: “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!


Edit: The bill was reported favorably to the full House by a vote of 34-10. Many thanks to everyone who helped by calling their representatives about it!

Restraint & Seclusion National Call-In Day - Contact Your Members of Congress

Please repost and distribute the announcement below, which explains how to contact your members of Congress on Thursday, January 21st, to ask for their support in preventing abusive restraint and seclusion in the schools.


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 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

Action Alert on Autistic Child Charged with Felony

As a consequence of a school restraint incident, an 11-year old Autistic boy in Arkansas named Zakhqurey Price has been charged with felony assault. There were no serious injuries, and the incident occurred under circumstances where the use of restraint would not have been legal if recently introduced federal civil rights legislation to protect children in schools had been in effect. Please take action by contacting the school principal and superintendent to inform them of your concerns and, if you can, repost the ASAN Action Alert set forth below.


Hello,

In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to. Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.

According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools. Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now. Find out how below:


School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834
E-mail: psiebenm@fortsmithschools.org


School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org
School Board Office: 1-479-785-2501 Ext. 1201


We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:

-Drop the charges against Zakhqurey Price

-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment

-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.


If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. His grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely. That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!


Update: The hearing has been rescheduled for April 13th. Click here for more on how you can support Zakh and his family.

Ari Ne'eman Chosen by President Obama for National Council on Disability

We are pleased to announce that ASAN President Ari Ne'eman has been nominated by President Barack Obama for a position on the National Council on Disability.

The White House
Office of the Press Secretary

For Immediate Release
December 16, 2009

President Obama Announces More Key Administration Posts, 12/16/09

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.”

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

Bios of the nominees are available through the above link.

Volunteers Needed to End School Abuse

In a bipartisan effort to protect children from dangerous restraint and seclusion in classrooms, new federal legislation will be introduced tomorrow by U.S. Reps. George Miller (D-CA), who is the chairman of the House Education and Labor Committee, and Cathy McMorris Rodgers (R-WA) who is a member of that committee and is the Vice Chair of the House Republican Conference. Their press conference will be webcast live from the Education and Labor Committee website at http://edlabor.house.gov/ at 11:00 AM EST on Wednesday, December 9, 2009.

As shown in a report by the U.S. Government Accountability Office on the inappropriate use of restraint and seclusion in classrooms, many students, including a disproportionate number of children with disabilities, have been injured and in some cases killed by these harmful practices. The federal government has no existing policies to prevent the misuse of restraint and seclusion in schools, and many states also lack adequate regulation and oversight.

ASAN is currently looking for volunteers to help with our advocacy work supporting the passage of legislation to protect students against school abuse. To volunteer, please write to info@autisticadvocacy.org with the subject line "Restraint and seclusion" in your email.


Update, December 9: The Justice for All Action Network has issued a press release supporting the legislation.

Second update: ASAN President Ari Ne'eman was quoted in an Education Week article on the proposed legislation, stating that it "is the first of its kind, going far beyond previous efforts to protect students with disabilities."

Employment Discrimination Testimony Transcript

Testimony given to the US Equal Employment Opportunity Commission and Department of Justice Civil Rights Division, Town Hall Listening Session on the ADAAA Proposed Regulations, Philadelphia, PA, 10/30/09; Stuart Ishimaru, Acting Chairman of the Equal Employment Opportunity Commission, presiding.


MR. ISHIMARU: Next we have Ari Ne’eman. We look forward to your statement and welcome.

ARI NE’EMAN: Thank you very much and thank you for the chance.

I represent the Autistic Self Advocacy Network, a group of Autistic people speaking for ourselves.

For too long, prior to the passage of the ADA Amendments Act, the approach of addressing discrimination and of viewing the difficulties that those on the autism spectrum face through the context of discrimination rather than merely through the context of impairment or charity was one that was all too often not taken in the autism world. With the passage of the ADA Amendments Act, and the promulgation of regulations implemented with a unique view to building a culture of civil rights that coincides with the growing recognition of the rights of those of us on the autism spectrum, those who desire to speak for themselves and take an active role in how we are viewed in society are trying to address the ways in which the society still poses obstacles.

We're very pleased by the regulations proposed in order to implement the ADA Amendments Act. And we have three broad suggestions in terms of how to improve them for adults and youth on the autism spectrum seeking to find and maintain, and avoid discrimination in the context of, employment.

First, we note that autism was included amongst the list of examples of impairments that will consistently meet the definition of disabilities. We would like to suggest that this be somewhat clarified to broaden the term to autism spectrum disability, rather than just simply autism, seeing as the term autism is commonly understood to refer to five diagnoses in the DSM-IV: Autistic disorder, Asperger syndrome, and others on the autism spectrum. Now, these different diagnoses have somewhat different characteristics, but they all substantially limit communicating, interacting with others and learning. As a matter of fact, in the DSM-V, the next edition, it has been proposed that these diagnoses be combined into a single autism spectrum disorder or autism spectrum disability diagnosis reflecting the fact that for more individuals, the particular autism spectrum disability diagnosis they receive is largely dependent upon what professional they visited or what region of the country they should happen to live in. We believe that clarifying the language to reflect autism spectrum disability will ensure that all autism diagnoses are covered.

Second, we also believe that in respect to the "regarded as" from the symptoms of impairment leading to adverse actions by employers, when this is brought up, that some consideration for the needs of people with invisible disabilities must be addressed in respect to the facts for people with invisible disabilities. One of the greatest difficulties is that our symptoms of impairment are extent to a lesser extent in the general population. We propose that a phrase be added in the section under actions taken based on symptoms of an impairment or based on use of mitigating measures, clarifying that an action taken on the basis of behavioral symptoms also present in the general population also constitutes an action covered under the "regarded as" prong. For example, an individual who is dismissed from a data entry job because he or she does not make eye contact with their supervisor, even if the employer is unaware of the autism spectrum disorder or disability, should still be covered under the "regarded as" prong of this definition.

Third, we also encourage that in respect to section 1630.10, discussing qualification testing and qualification tests, that particular focus be given in the example of a specific example of the ways in which personality tests are administered by many employers. As a matter of fact, a 2003 survey by Management Recruiters International found that 30% of American companies use personality tests, which often act to serve as an obstacle to the full access and the equal consideration in employment and hiring decisions for people with social communication disabilities. As such, we propose the inclusion of an example, to make this section more actionable for those of us with invisible disabilities and for those of us with communication disabilities and focusing on whether or not employees are asked questions as a condition of hiring or relating to social relationships or anxiety in social or other contexts. We feel that this will have an effect on employment discrimination in hiring and promotion for people with invisible disabilities.

Overall, we were extremely pleased by the quality of these regulations. And our community is looking forward to working with the Equal Employment Opportunity Commission and working with the broader civil rights community to help build a culture of civil rights and a culture of ADA enforcement in the autism spectrum disability community and beyond.

Thank you very much for your time and I would be glad to answer any questions.

MR. ISHIMARU: Thank you very much. Very, very helpful. Are there any questions? No? I think you were pretty clear.

MR. ISHIMARU: I actually have one. On the personality tests, do you have a feel of how often they're used and for people with autism spectrum disability issues, are they ... will they always root out people who have the disability or does it happen more often than not?

ARI NE’EMAN: Well, this is something that's a growing concern in the human resources context. And one of the issues is that the use of personality testing is growing significantly, with 30% of American companies utilizing them in one form or another. There's a tremendous amount of diversity in terms of what personality tests are being utilized, the level of science that might back them and there's actually been in the disability context and we know in the context of social communication disabilities, in large part, because of the very issues that led to the passage of the ADA ... very little consideration as to the extent to which these personality tests are focusing on job-related tasks that would be covered by a matter of business necessity. We believe the anecdotal experience of many of our members and those of us on the autism spectrum show that these tests do tend to screen out adults on the autism spectrum. Particularly, because they're being applied in contexts that do not necessarily have those particular skill sets within the essential functions of that job. It's one thing if these tests are being applied in the context of sales force determination. It's another thing to be applied in an engineering context or in a data entry job or in another type of job. So we know that these are relatively widespread and we do know that they tend to, because they are generally focused on the nature of the employee's social interaction, the nature of the employee's private life, the nature of the prospective employee, to screen out many individuals on the autism spectrum and with other social communication disabilities or with other invisible disabilities.

MR. ISHIMARU: Very good. Thank you very much. Very helpful.


ASAN has posted the transcript of this testimony on our main website, and it is also available on the EEOC website. Please feel free to repost it if you so wish.

National Town Hall run by Advancing Futures for Adults with Autism

This article was written by an autistic self-advocate who attended one of the AFAA National Town Hall meetings on November 13, 2009, and describes his impressions of the event.


Nothing about us without us.

This is what I thought when first reading about the National Town Hall put on for Advancing Futures for Adults with Autism: this meeting must have the voices of autistics heard loud and clear, especially those of us who are adults and are struggling to live and survive in today's society. What an opportunity to address a part of our population that has long been overlooked!

Then I found out that the organizational chairs of the entire production were the New York Center for Autism and Autism Speaks.

Nothing about us without us.

These words again resonated inside me as I saw that Autism Speaks was playing a key role in this production, reminding me of the numerous discriminatory and prejudicial actions they have taken against people with autism (like myself) all in the name of so-called advocacy, awareness and research fundraising. Unfortunately I didn't have the numbers to protest the event and make a major impact with a boycott. I decided to register for the Town Hall – not as a way of being complicit – but as a way to gently and smoothly show the problems with Autism Speaks, their actions, their discrimination, and what people with Autism can do and what they really want.

Attending the event alone would not be enough, so I supplied myself with two fliers. One was an article listing ten misconceptions of autism by Alex Plank, a fellow person with autism and founder of the online community Wrongplanet.net. The other was a fact flier produced by ASAN (Autistic Self Advocacy Network), titled, “Why Autism Speaks Does Not Speak For Us,” which had a concise and current reference list along with its facts.

November 13th, Friday: the day of the Town Hall had finally arrived. I walked in the conference center at the satellite location to find a registration table with an Autism Speaks banner taped to the front. I picked up my name tag – they had listed me in the wrong state; I kept walking. The next person I encountered I'd met before, on a board for a resource center for persons with autism that had its space at a university. Unfortunately, this board has dissolved and the resource center closed for good. What's worse is that she is now working for Autism Speaks, and as I walked up to her, she treated me as though I were 4 years old.

“Oh Hi [Mr. E], How are YOU? (Fine) Do you REMEMBER me? (Yes) Let me take you to your table-”

At this point, I calmly went about my way and went to my table, as I became tired of the 'special' treatment.

I found my place at the table and put down my bag, proceeding to pass out my fliers. No one questioned me, nor did they question if I was a part of the staff leading the event – they happily took the fliers as if it was a part of the Town Hall. Every flier I printed up was given out; none were left over.

Once I sat back down, I looked around and watched as the participants (who were waiting for the Town Hall to start) actually read the fliers I handed to them. This may sound insignificant, but to me it made a huge impact – our message was being read! Before the conference started, I was approached by a few people who stated that they appreciated receiving the fliers, and thanked me for having the courage to bring them to the Town Hall. Only one person spoke in disapproval.

10:20 am: the National Town Hall started. A giant video screen beamed in a live feed from the University of Chicago where the actual Town Hall was centrally held. I was at one of the satellite locations, of which there were 16 total. A few speakers appeared on the screen, including two from Autism Speaks: Lisa Goring, Director of Family Services, and Peter H. Bell, Executive Vice President. Director Goring's speech focused on the topic at hand, which was advancing futures for adults with autism. Executive Vice President Bell, however, decided to tell a personal story about his family's experience with autism and how he and his wife had prepared for having a baby. I found this unnecessary and off track, and so did others, as shown in the faces and reactions of the crowds both at the Town Hall and at the satellite sites.

The program was not run by Autism Speaks (although funded and organized by it) but by AmericaSpeaks, a nonpartisan organization based in Washington, D.C. that uses technology for discussion of public issues. Daniel Clark, an Associate of AmericaSpeaks, came on stage and laid out (vaguely) how the Town Hall would work, and introduced the “Theme Team,” a group of people with laptops set up to consolidate the various data received from around the various sites and “create common themes.”

There were four different points to be voted on, but each table in each site was encouraged to discuss the issue – and at our table, we all agreed that each point's list of strategies needed some modifying. This, of course, would not happen, and was not the point of the Town Hall meeting. The longer it went on, I started to think that this was merely a showcase for Autism Speaks' national agenda for adults with autism, and all who attended were a test group who would 'streamline' the agenda strategies down for them.

I was only half right.

Before each point's list of strategies was a sentence that stated its five-year vision. The central site in Chicago, seemingly desperate to show a person with autism 'participating,' allowed an autistic to read that sentence. Overall, the event had extremely little participation by anyone on the autism spectrum. They did have a 'special' segment for a person with autism who could draw quickly and with proficiency: they asked him to draw an illustration that interpreted what the Town Hall had accomplished that day. Did we get to see any of his work? You can guess the answer: No. This token participation had the feel of a minstrel show put on by persons in the present day: tasteless, ignorant, horribly discriminatory, and wrong in every way.

The Town Hall didn't actually fit a Town Hall-type of meeting; it was more of a discuss-and-vote type of meeting. This event wasn't really devoted to developing or modifying current ideas, but rather reinforcing the current proposals and strategies that were shown to us that day. Change or direct input incorporating original and/or unique ideas was not accepted due to the fact that all content was filtered & watered down by the “Theme Team” into something deemed more “acceptable.”

Now that the Town Hall is over, what did the participants (majority 45-64 year-old white relatives of or program/service providers to a person with autism, with an income of at least $60,000/year and up) actually decide, and what will they do next?

The AFAA (Advancing Futures for Adults with Autism) wants participants to become a “fan” of them on facebook, share resources and stories on their website, spread information about AFAA through word of mouth, and participate in the discussion forums on the site (afaa-us.org). In 2010, AFAA will host an Autism Congress, which I'm sure will represent people who speak for people with autism.

As I left the conference room, nevertheless feeling empowered that people actually read the fliers I passed out, Executive Vice President Peter Bell from Autism Speaks appeared on the screen one last time, demanding 90 seconds from the audience as they began to pick up and leave. I slowly turned around to hear an admonishment cloaked in praise:

“...and for those of you who have autism who attended today, thank you.”

I stood there, shocked at the sheer hypocrisy of the statement compared with the entirety of the Town Hall. Like many autistics, I would have traded all the thank yous in the universe for equal representation and the ability to serve in positions of leadership for groups that claim to speak on our behalf.

Giving out those fliers was my first step towards getting our own voice heard.