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!

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

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

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

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

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.

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