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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER    
Monday, December 3, 2001 

INDEX:
*  Legal tide has turned against the disabled
*  Parent Letter: Dear Parents, Professionals, and Andrew Wakefield,
*  Contact Brent Taylor Regarding DR Andrew Wakefield
*  Contact Autism Awakening For a Story Submission response to the  
     dismissal of Dr Wakefiled
*  CHILD WITH AUTISM SPEAKS FIRST WORDS
*  Single Dose of Secretin Fails to Alleviate Symptoms of Autism
*  TV Update: Parents of Disabled Children who are self-employed or own a 
     business
*  Teleconference: GREATER EXPECTATIONS: DEVELOPING LEGALLY 
     CORRECT AND EDUCATIONALLY APPROPRIATE IEPs
*   Teleconference: Universal Design for Learning:  Improved Opportunities
       for Access, Participation, and Progress  
*  Cablevision has produced a 30 second PSA for AHA/AS/PDD
*  CAUCUS for Autism Meeting
*  ISBE Parent meeting-reminder
******************************

Legal tide has turned against the disabled

By Lennard J. Davis. Lennard J. Davis is Professor and Head of the
Department of English of the University of Illinois at Chicago

November 25, 2001

Most Americans react to the idea of disability with good wishes and a
silent prayer to the effect that "there but for the grace of God go I."

With this level of detachment, few may have noticed a disturbing and
seemingly ineluctable trend in which the courts have been whittling away at
the provisions of the Americans With Disabilities Act, passed with much
fanfare and hoopla in 1990 under Bob Dole's stewardship, George Bush Sr.'s
imprimatur and bipartisan congressional support.

Ten years later, it has been estimated that 95 percent of the cases brought
before the courts under the provisions of that act have gone against people
with disabilities.

The Supreme Court has been steadily hacking away at the provisions of the
ADA.

Two recent cases could end the effectiveness of that legislation. The first
case is one in which an employer wants the right to determine whether the
job that an employee may want is a danger to his or her health.

Chevron withdrew the offer of a refinery job to a man because he tested
positive for asymptomatic chronic hepatitis C. Chevron maintained that the
man would be doing possible harm to himself by accepting the position.
While the ADA provides that an employer cannot discriminate against someone
with a disability, Chevron asks that employers be allowed to discriminate
to protect the person from possible harm.

In bringing this case, Chevron is appealing a decision of a federal appeals
court in San Francisco that rejected "paternalistic rules that have often
excluded disabled individuals from the workplace." If the case is decided
in favor of Chevron, it will weaken the ADA by allowing employers, not
employees, to decide health issues.

The second case could have even more profound consequences in dismantling
the ADA.

In Toyota vs. Williams, the auto company argues that Congress has defined
disability too broadly. In this case an employee of the company had carpal
tunnel syndrome that limited the use of her hands. She was able to perform
her job perfectly well until she was transferred to a different task, which
she could not perform.

Her employer claimed she is not disabled because although she could not
perform her new task, she could brush her teeth, pick up objects in her
home and so on. Toyota demands that those claiming coverage under the ADA
must demonstrate that they are "severely restricted from using their hands
to perform a broad range of basic functions needed to meet the essential
demands of everyday life."

The ADA defines disability broadly as a substantial limitation in one or
more life activities. In addition, a person is considered to be in the
protected class not only if he or she has a disability but also if the
person is "regarded" as being a person with disabilities.

The latitude of this definition has had employers up in arms. They fear
they will be beset with requests from their employees for accommodations
and will be sued for violations of the act. This, they say, will reduce
employers to poverty. However, recent estimates of small businesses
calculate that accommodations cost, on average, less than $5,000, of which
half can be made up by federal credits.

States' rights

The Supreme Court, with its new activism, has decided previous cases so
that states' rights predominate over federal protections in the area of
disability. It has also ruled that people with correctable disabilities,
such as hypertension and myopia, are not protected under the law, even if
their employer discriminates against them for having such conditions. The
net effect of these decisions has been to continue whittling away the
protections designed by Congress for people with disabilities.

The lack of knowledge or interest in these developments on the part of
nondisabled people is part of a larger picture. We have created a firewall
between them and us. While many white people have embraced the cause of
people of color, and while many straight people have taken up the cause of
gay, lesbian, bisexual and transgendered people, few have taken up the
cause of people with disabilities.

Perhaps the reasons for this are telling.

No whites will become black; few straights will become gay; but every
person can become disabled. All it takes is the swerve of a car, the impact
of a football tackle or the tick of the clock to make this transformation.
Christopher Reeve, one day Superman, next day a quadriplegic, is the most
dramatic example of this quick-change act.

Baby Boomers

Today's Baby Boomer generation is fast heading toward disability. The World
Health Organization predicts that by 2020 there will be more than 690
million people older than 65, in contrast with today's 380 million.
Two-thirds of the elderly will be in developing and underdeveloped nations.

The increase in the elderly population will cause a major change in the
disease patterns of these countries. There will be increasing rates of
cancer, kidney failure, eye diseases, diabetes, mental illness and other
chronic, degenerative illnesses such as cardiovascular disease.

Although identity politics is popular these days, what people fear is that
disability is the identity one may become but that one didn't want. This is
the silent threat that makes folks avoid the subject, act awkwardly around
people with disabilities, and consequently avoid paying attention to the
backlash against disability rights.

Even without the Baby Boomers, 15 percent to 20 percent of people in the
U.S. have disabilities. Add to this caregivers and family members, and
about half of the population is dealing with disability. People with
disabilities make up the largest physical minority in our country--too
large a group to ignore, and too large a group to roll back the protections
afforded to them.

We have to recognize that "them" is actually "us." If employers are
concerned that the protected class is too large, they may have to
reconsider their position as more people become disabled.

Effects of time

Most people would be better off identifying with people with disabilities
than fearing them. As you begin to notice your hearing going, your hands
stiffening, your eyes in need of stronger glasses, you may well want to
rethink what laws are being consigned to the dustbin of history.

Would it be such a miscarriage of justice if all of us were protected from
discrimination just as all of us are protected from voter fraud and
unwarranted search and seizure?

It isn't necessarily bad to be disabled, but it is bad to be discriminated
against, unemployed, poor and blocked by bad laws, architecture and
communication.

One out of 5 people now living near you has a disability. They are your
uncles and aunts, grandmothers and sisters. Pretty soon they'll be you. We
need to think twice before we disregard the trend of the courts in
eviscerating disability rights.

To do so we act, literally, at our own peril.

******************************

Dear Parents, Professionals, and Andrew Wakefield,

This is a sad, sad day for all.  Having met Andy Wakefield, I can tell you
that he is one of the few in the medical community whose goals are not at
all tainted by establishment's view of what's politically correct.  He has
not wavered in his quest to find the reasons and eventually a cure for our
children.  I am sure that as more and more of the people with power are
affected by autism and bowel problems - and this certainly will happen -
that Andy will find them at his door asking him for help.

Good luck, Andy.  You are a good man.

Eric Einbinder
Dad to Jake and Matt
Latham, NY

******************************
Contact Brent Taylor Regarding DR Andrew Wakefield
For those people that would like to make comments to Brent Taylor
regarding the recent events at the Royal Free Hospital and Andrew
Wakefield, MD, feel free to email him at (got the email address off the
Lancet website)....

b.taylor@rfc.ucl.ac.uk
******************************

Contact Autism Awakening For a Story Submission
Response to the dismissal of Dr Wakefiled

Contact Autism Awakening For a Parent, Professional, or Organization Autism First Steps Story Submission response to the dismissal of Dr Wakefiled . We are currently requesting submissions  For those people that would like to make comments regarding the recent events at the Royal Free Hospital and Andrew. We want to hear your views. We reserve the right to edit out any unprintable content.
Feel free to e-mail us at: AutismAwakening@aol.com
******************************

CHILD WITH AUTISM SPEAKS FIRST WORDS

This was ONE of the Most AWESOME Days of my Life!!! My child said first words.
Friday I went to the half special needs half typical children preschool I volunteer at. 
When I got there I did my rounds,
talking to every kid while they laid in their cots,
all except "John" the little boy with Autism all the
kids in this room are three. Well later all the kids
got up out of their cots playing around and whatnot
and he goes up to the cubbies (hes nonverbal mind you)
and he SIGNS EAT!! he has evidentally been doing this
a little bit for a while so then hes eating and he
wants moe and the teachers goes you want more? and
signs more at hte same time and THEN HE DID IT
PERFECTLY he has never done more perfect normally he
kind of claps and he SAID IT I was so excited that was
one of the greatest things that he mimimicked her and
THEN we were like YAYYY JOHN and clapped and he
responded he looked up and smiles really big and
THEN
he was done with that cookie and he did it without
prompting he took my hand to get my attention
(something else he has just started doing) and he
says More and signs it perfectly IM am like John if you
keep talking to me I will feed you cookies all day
long. THEN
he did something else he has never done before he goes
over to HIS CUBBY and gets his jacket. and takes my
hand and walks to the door because he wants to leave
THAT WAS AWESOME

Then when he left he said Bubye 

That was an Awesome day I am so proud

liltreehugger@yahoo.com

******************************

Single Dose of Secretin Fails to Alleviate Symptoms of Autism

WESTPORT, CT (Reuters Health) Nov 28 -
One IV dose of porcine secretin fails to improve core symptoms of autistic disorder in children, according to the results of a multisite, placebo-controlled trial funded by the National Institute of Child Health and Human Development. This finding matches those reported by other investigators since 1999. However, in a study reported in July, Repligen Corporation, located in Needham, Massachusetts, found that three doses given at 3-week intervals yield a significant response in a more controlled population of children with autism. The US Food and Drug Administration recently granted a "fast track" designation to Repligen for development of a synthetic human form of the gastrointestinal polypeptide. In the new study, reported in the Journal of the American Academy of Child and Adolescent Psychiatry for November, Dr. Thomas Owley and associates enrolled 56 children, ages 3 to 12 years, who had autistic disorder. The children were randomized to an IV infusion of porcine secretin, 2 clinical units per kilogram, or a saline placebo. Four weeks later, the subjects received the alternate treatment. According to assessment every 2 weeks for 8 weeks, the difference in Autism Diagnostic Observation Schedule social-communication total scores did not differ significantly the placebo and secretin groups (p < 0.73). Differences were similarly insignificant according to the Gilliam Autism Rating Scale and the Aberrant Behavior Checklist-Community Version. "It's not clear at this time that secretin adds to the treatment of autistic disorder," first author Dr. Owley, who is on the faculty at the University of Chicago, told Reuters Health. "What was disconcerting was that, even with 56 kids, not one had a really good response." "We're certainly disappointed that it didn't help," he said, adding that if Repligen researchers find a subgroup of autistic children who respond to secretin, "that would be extraordinarily exciting." "There is absolutely a need to give more than one dose to see an effect in these children," Laura Whitehouse, a spokesperson for Repligen, said in a separate interview with Reuters Health. "After all, many drugs don't have an effect after a single administration, particularly when you hope to find a change in cognition or social behavior." She also noted that treatment effects appear to be optimal when secretin is given early, so her company's phase II trial included 126 children between the ages of 3 and 6 years. "In all 126, we found a statistically significant improvement in kids as determined by Clinical Global Impression scale," Whitehouse said. The data were presented in July at the annual meeting of the Autism Society of America in San Diego. Secretin was even more effective when analysis was confined to children who had normal levels of two biomarkers in their stool, chymotrypsin and calprotectin. "Children [with high levels of the biomarkers] had really severe GI problems," Whitehouse commented. When the researchers evaluated the responses in the 66 subjects with normal biomarkers, a significant effect of secretin was noted using four different assessment tools. J Am Acad Child Adolesc Psychiatry 2001;40:1293-1299.

http://neurology.medscape.com/reuters/prof/2001/11/11.29/20011128drgd001.html
******************************

Parents of Disabled Children who are self-employed or own a business

Monday Night, Dec. 3, 2001 from 7-9pm 

"As you know, there are many expenses for treatments and therapies not covered by our insurance programs.  Joe Colasanti will give a presentation to any parents who are self employed or own a business.  Joe will show us how to set up our business so that we may take advantage of huge tax savings through an IRS approved, medical reimbursement program.  His experience has saved other parents in this situation thousands of dollars." We will meet at 2711 Lahser in the Detroit Medical Center Southfield Education Center located one block north of 11 mile road on the west side of Lahser.  Once in the DMC complex, we will be in the northernmost building (behind 5/3 bank).  The meeting room is immediately to the right as you enter the building.  If you have any questions or need driving directions call:  Suzanne Rossi (248) 626-6066 or (248) 408-3365.   

The Special Education segments produced by Richard Bernstein will air on CBS Channel 62 on the following dates:Monday December 3, 11:00pm news and The segments explain the issues surrounding the proposed revisions to the special education rules in Michigan and urge supporters to continue their involvement in opposing these changes.

******************************

TELECONFERENCE ANNOUNCEMENT:

GREATER EXPECTATIONS: DEVELOPING LEGALLY CORRECT
AND EDUCATIONALLY APPROPRIATE IEPs

Mitchell Yell, Ph.D.The Individualized Education Program (IEP) is the centerpiece of the Individuals with Disabilities Education Act (IDEA). It is the procedure for devising a free appropriate public education (FAPE) for students in special education. As such, it is an extremely important legal and educational document. In the IDEA Amendments of 1997 (IDEA '97) Congress made significant changes to the IEP. The theme that runs through IDEA '97 is the need to improve educational results for students with disabilities. To do so, Congress made the most important changes to special education law since the passage of P.L. 94-142 in 1975. These changes, particularly those in the IEP process, pose new challenges for both regular and special education teachers. The purpose of this teleconference is to offer a method for developing legally and educationally appropriate IEPs. To do this, I will first present an overview of the legal requirements of the IEP planning process, including the changes in IDEA '97. Second, I will explain the required contents of the IEP, focusing on measurable annual goals, benchmarks and short-term objectives, and behavior intervention plans. Finally, I will propose a framework for developing legally and educationally appropriate IEPs.
ABOUT OUR PRESENTERS:
Richard F. Daugherty, Ed.D., is an Associate Professor of Educational Leadership at the University of Nevada, Reno, specializing in education law. He serves as a special education hearing officer, hearing officer mentor, and state review officer for the Nevada Department of Education. Dr. Daugherty is the author of Proactive School Law (1993), Nevada School Law for Teachers (1994, 1997, 2000, 2002), and co-authored Nevada Education Law (1998), a legal resource for Nevada administrators, educators, and school attorneys. He recently authored Special Education: A Summary of Legal Requirements, Terms, and Trends (2001). Daugherty is a monthly contributor to the Education Law Reporter. Dr. Daugherty authored a 1995 national education study commissioned by the American Association of School Administrators, which was disseminated to all colleges of education by the United States Department of Education. He also served as an America 2000 panelist by appointment of the U.S. Secretary of Education. Daugherty has authored several educational journal articles; is a member of the editorial board of the Journal of Research for Educational Leaders; and is a frequent presenter, regional consultant, and school district trainer on legal and proactive leadership issues. He has served as a reviewer for texts published by the American Psychological Association and Allyn & Bacon/Longman. Daugherty has developed three law and constitution courses which are offered on the Internet, enrolling students from 26 states and 6 foreign countries. Following experiences as a teacher, coach, athletic director, middle and high school principal, and district superintendent, Daugherty completed a doctorate in educational administration at the University of Wyoming and is in his fourteenth year teaching at the college and university level. He was the 1995 recipient of the Cashell Excellence in Instruction Award at the University of Nevada, Reno.
Joy Smiley Zabala, M.Ed., is a professional developer and consultant who provides assistive technology and leadership support to school communities, professional associations, departments of education, individuals and companies across the nation. She has participated in education and assistive technology support from a variety of perspectives: over ten years as a general educator in Florida, Georgia, and Venezuela; over fifteen years as a special educator and facilitator of adult learning in Texas and around the country, and two years in the private sector. Joy is the developer of the SETT Framework, a problem-identification and solving tool which supports collaborative problem-identification and solving by students, parents, and multi-disciplinary professionals. She is also a founding member of the QIAT Consortium, a grassroots national group which is in the process of developing a set of Quality Indicators for Assistive Technology Services. In this capacity, she maintains the QIAT Homepage and facilitates the QIAT Listserv which can be joined via the web page. Joy serves as member of the advisory board of LD Online, as a core consultant to Project LINKoUS located at the Education Development Center in Newton, MA, and as member-at-large on the executive board of Technology and Media (TAM) Division of the Council for Exceptional Children (CEC). In addition to these ongoing activities, Joy represented the field of education on the original Test Development committee for the national credentialing examination in assistive technology developed by RESNA and taught several sessions of Ready! SETT! Go!, an interactive four-week course on the World Wide Web, under the sponsorship of the National Center for the Improvement of Practices in Special Education located in Newton, MA. A native of Daytona Beach, Florida, Joy holds a Bachelor of Education from the University of Florida, a Master of Education from Florida Atlantic University, and has completed additional graduate studies in language acquisition, special education, and technology. Joy is currently a doctoral candidate in distance education for special education personnel preparation and leadership at the University of Kentucky.
Mitchell Yell, Ph.D., is a Professor in Special Education in the College of Education at the University of South Carolina in Columbia, South Carolina. For the past 12 years, Dr. Yell has conducted extensive research on legal issues in special education. His primary goal has been to extrapolate principles from legislation and litigation, communicate them to parents, teachers and administrators in a clear, nonlegal manner, and to assist school districts in the formation of legally sound, research-based, policies. Prior to coming to the University of South Carolina, Dr. Yell was a special education teacher in Minnesota for 16 years. During this time he taught in elementary, middle, secondary classrooms, and special schools for students with learning disabilities, emotional and behavioral disorders, and autism. He has published 54 journal articles, eight book chapters, and has conducted numerous workshops on special education law. He writes a column on education law for the journal Preventing School Failure and is the author of a textbook published by Merrill Publishing titled The Law and Special Education. He is also the lead author of the forthcoming textbook Educating Students with Emotional and Behavioral Disorders in General and Special Education Classrooms, also published by Merrill/Prentice Hall. Finally, he has recently started working on the special education law resource book, Developing and Implementing Legally Correct and Educationally Appropriate Special Education Programs, to be published by Sopris West.

******************************

TELECONFERENCE ANNOUNCEMENT:

 

Universal Design for Learning:  Improved Opportunities for Access, Participation, and Progress  

Tuesday, December 11, 2001, 2-3 p.m. EST FocusUniversal Design for Learning (UDL) is a relatively new approach for teaching, learning, and assessment.  Drawing on new brain research and new media technologies to respond to individual learner differences, software with UDL features facilitates the individualization of learning materials and experiences for maximum student inclusion and teacher effectiveness.  UDL also impacts the development, selection, and use of curricular materials.  Recent neuro-scientific research and UDL provide frameworks for teaching diverse learners, including students with disabilities.  This research gives us a new way to look at the strengths and weaknesses of individual learners across three functional networks in the brain:  recognition, strategic, and affective.  These insights into the learning brain have profound implications for how individuals learn and for how teachers teach.  UDL is core to the work of the National Center on Accessing the General Curriculum.PresentersChuck Hitchcock, Director, National Center on Accessing the General CurriculumGrace Meo, Director of Curriculum and Practice, National Center on Accessing the General Curriculum
How to CallDial 334-323-4100 and when prompted, enter # 40954.  The only cost to you is the long distance fee to the 334 area code.

******************************

CAUCUS for Autism Meeting: Reminder

Date: Monday, December 3, 2001
Time: 7:00PM - 9:00PM EST (GMT-05:00)

Location:  Upper Main Line YMCA (directions www.UMLY.org)
1416 Berwyn-Paoli Road, Berwyn, PA.  Room 1.

******************************

Cablevision has produced a 30 second PSA for AHA/AS/PDD

(Public Service Announcement) for AHA/AS/PDD which is scheduled to appear over 900 times on a variety of cable networks during December (in fact you may have already seen it!).  It will reach more than 800,760 households and business in Nassau and Suffolk counties.

We're so thrilled to have this opportunity to enable more people who are
seeking support, resources and information know about our existence and for
them to know that they are not alone.

The PSA has information on our support services, pictures of our conferences,
shows our participation in the NAAR (National Alliance for Autism Research)
walk and DISPLAYS our chapter contact numbers in Nassau and Suffolk Counties
and our WEBSITE address.

This is a community service of Cablevision of Long Island designed to help
local nonprofit groups with limited advertising resources produce original
public service announcements (PSA's) and air them on cable TV free of charge.

Cablevision cablecasts the video spot for one month on a variety of local and
national cable networks, which may include A& E, BET, CNBC, CNN, Cartoon
Network, Comedy Central, Discovery Channel, E!, ESPN, ESPN2, Fox Family
Channel, Fox News Channel, The History Channel, Home & Garden TV, The
Learning Channel, Lifetime, MSNBC, MTV, News 12, Nickelodeon, TBS, TNT, USA
Network or VH-1. 

Our most sincere gratitude goes to Cablevision for their generous
contribution and hard work.

This email is going out to our email list of over 300 families and
professionals and will be in our newsletter which is mailed to over 600
families and professionals.  Please feel free to duplicate this message.


Bernice Polinsky, bernicep@optonline.net
phone (631) 269-9246
Patricia Rosenthal Schissel, CSW, patschiss@aol.com
phone/fax (516) 484-8404
Advocates for Individuals with High Functioning Autism,
Asperger's Syndrome and other Pervasive Developmental Disabilities
www.aha-as-pdd.org

******************************

ISBE Parent meeting-reminder

Parents there are still two chances to attend one of these meetings:
* December 3 (tomorrow) at the Braun Education Center in Oak Forest
* January 22 in the Valley View district (Romeoville/ Bolilngbrook) -
location not yet  determined.  Check the ISBE website at www.isbe.stateil.us

You can attend a session other than that of your "home" district if needed,
but you won't have the opportunity to discuss these issues with your specific
Special Ed Administrators. 

Here's what they asked us to do:
1) START - Write a list of what you'd like the school to start doing
2) CONTINUE - Write a list of what you'd like the school to continue doing
3) STOP - Write a list of what you'd like the school to stop doing 

We, also, received an evaluation form that asked the following questions
1) Were you invited to your child's last IEP meeting?  Y or N
2) Were you given notice of the IEP meeting 10 days in advance? Y or N
3) If you were unable to attend the IEP meeting, did the district attempt to
arrange an alternate time/date?  Y or N
     If no, please explain
4) Were you concerns and ideas addressed in the IEP?  Y or N
5) Was there adequate time in your IEP meeting to address all issues? Y or N
6) Was the determination made at your child's most recent IEP regarding
his/her participation in state
     or district-wide assessments? Y or N
7) Is your child receiving the services listed on the IEP? Y or N
8) Are you satisfied with the services your child is receiving? Y or N
    If no, please explain
9) Additional comments or concerns?

Address to mail this survey along with other written comments should be sent
to:

Illinois State Board of Education
Division of Special Educaiton Compliance, E - 228
Attention: Marcia Kelley
100 North First Street
Springfield, IL 62777
OR
Marcia can be reached toll-free at 866-262-6663 or via e-mail
mkelley@isbe.net.

IF YOU WERE NOT ABLE TO ATTEND, SEND MARCIA YOUR COMMENTS TODAY via E-MAIL!

******************************

Autism Awakening, Autism FIrst Steps Newsletter, or any staff do not endorse any individuals, groups or programs.  References regarding programs, meetings, resources, research, opinions, treatment, etc., should not be interpreted as an indication of endorsement.  They are provided for informational purposes only. This is an attempt to keep the nation advised to all diagnostic, treatment, therapy, educational,
options available as well as legislative autism updates and more.

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ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE.  THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.