| Volume VIII, Issue 3 | September, 2001 |
Bowl-a-Thon Set for OctoberMark your calendars for Sunday, October 21 and plan to come have fun bowling either in the Seattle area or in Puyallup. Please see the brochure inserted in this newsletter for full details. This is our major fund raiser of the year, and we could use your help in making it a success. Let's bowl a strike for TS awareness! |
Our state chapter board met for its annual retreat in July to review the goals we set for our chapter last year and to set new ones for the coming year. Here is a recap of some of last year's accomplishments:
Our chapter welcomes a new board member, Bernadette Witty. Here is what she has to say about herself:
"Born in the city of Melbourne, Victoria in Australia, I lived in Melbourne for my first 22 years. After graduating from university with a Bachelor of Science I began working with EDS which introduced me to the world of "information technology." Five years later I relocated to Sydney and after meeting a charming "Yankee" from the Pacific Northwest, we married. Our next move with EDS was a 15 month assignment in Kuala Lumpur, Malaysia, which although a cultural shock, was one of the most interesting experiences in my professional career. I then moved back to the U.S. with my husband in 1998, and settled on Bainbridge Island where we have been ever since. I was diagnosed with TS two weeks prior to the birth of my first child. My daughter is now 18 months old and together with my husband and two Labradors, appropriately named "Melbourne" and "Sydney" we are enjoying life in the U.S. My interests include gardening, reading, cooking and enjoying life as a stay-at-home Mum. I am excited about joining the WA TSA board and look forward to helping and contributing in as many ways as I can."
And, in fact, she will be contributing greatly as she assumes the role of co-president with our current president, Roseanne Torgerson. Besides her duties as president, Bernadette will also be assisting us with web site updates and with our chapter's participation in YADA days (see page 1 for information on YADA). Welcome Bernadette!
We have the following opportunities for you to help support your chapter and the people in our state with TS. You can volunteer for all or part of these tasks. Use the contact information on page 3 to le t us know if you're interested.
Staff the informational booth at the I.D.E.A.S. Conference - this conference will be held next February in Spokane. We need volunteers to work parts or all of two week days when the conference runs to distribute informational materials to conference attendees and answer questions about TS. The conference is att ended by special ed. personnel, teachers and parents. You should live in the Spokane area.
Grant writing - We need someone to help us write small grants to fund things such as having a representative from national TSA come to the I.D.E.A.S. Conference and give a presentation on TS, do more school awareness projects, or help underwrite the costs of putting on a chapter educational conference. This person could live anywhere in the state.
Newsletter editor - Do you like to find useful information regarding TS and share it with other people? After five years of writing our chapter newsletter, the editor is ready to hand over the reins to someone else. Although the mailing permit and our printer are currently in the Seattle area, it is possible for the newsletter to be produced from any part of the state.
Leslie is known to have one of the best web sites regarding TS, so while you're filling out the survey, check out all the other information and resources on TS she has available.
TSA funds a number of researchers each year who are doing work on TS and related disorders. Here is a sampling of what the 2001 funded proposals were:
Please note that TSA cannot provide copies of the papers listed above. Refer to a local medical library.
Good reading - A new book worth checking out is iWhy Can't They Just Behave? A Guide to Managing Student Behavior Disorders. Written by Barbara Zimmerman, it looks at the identification, characteristics and management strategies related to several disorders including ADHD, Fetal Alcohol Syndrome, Anxiety Disorders (including school phobia), TS, Asperger' s Traumatic Brain Injury and Attachment Disorders. The final chapter covers behavioral interventions, and most chapters include interviews with families and professionals.
Taken from the TSA of Northern New York newsletter, Summer 2001.
Editor's Note: Below are two articles showing both hope and warning about the use of nicotine in conjunction with controlling TS symptoms.
Mecamylamine: Hope on the Horizon
Amy Wilensky, author of the memoir, Passing for Normal
I recently had the opportunity to speak to Dr. Archie A. Silver, a Professor, Distinguished Scholar and the Director of Child and Adolescent Psychiatry at the University of South Florida, and a man who has conducted extensive research on the nicotine pat ch as a treatment for Tourette Syndrome. Most recently he has been studying a nicotine derivati ve, mecamylamine, and making some promising conclusions. The University of South Florida is a leading clinical research center for the treatment of Tourette Syndrome. Dr. Silver and his colleagues' research on mecamylamine was recently reported in the international medical journal iLancet.
Q: What is mecamylamine?
A: Mecamylamine is an old drug - first introduced in 1956 as a treatment for high blood pressure. Today it is sold under the trade name Inversine.
Q: How does it affect the brain?
A: Put simply, mecamylamine blocks nicotine receptors in the brain.
Q: How did you first discover that nicotine had an effect on people with Tourette Syndrome?
A: We got into this because one of our colleagues discovered that when nicotine was given to rats who had also been given haloperidol (Haldol), it potentiated the action of the Haldol, which induces relaxation. When the rats were given nicotine in conju nction with the Haldol, it increased the Haldol's effect times ten. So we thought that nicotine would maybe have a helpful effect for those with tic conditions, such as TS. Nicotine gum was indeed helpful, but the effect lasted for only about 45 minutes, and it had distasteful side effects. Then we tried the nicotine patch, which was also quite effective. With the patch, we were able to reduce the dose of Haldol by 50% and improve the quality of life of many people with TS.
Q: How and why did the nicotine studies lead to the research on mecamylamine?
A: We thought that inhibiting certain receptors - as opposed to stimulating them - could also possibly have an effect. People don't like the sound of nictoine, which they associate with cigarettes; it also made kids nauseous. We thought of mecamylamine, a nicotine antagonist, and did an open trial that looked good, and then tried it in a controlled study. Then, we did a double-blind, placebo-controlled multi-site study involving 12 universities and 60 patients - we just presented the results at a neuro-science meeting.
Q: How well does it work?
A: It works wonderfully in terms of controlling irritability, rage, depression - the emotional factors of TS. It really seems to control these elements. It does not have a very significant effect on motor tics.
Q: Is it available to consumers?
A: It has not been approved for use with TS, but it is approved for hypertension. The drug is currently produced by Layton Bioscience. I will say that doctors can use it however they want.
Q: What are the side effects?
A: We use it in very low doses (2.5-7.5 mg, 1-3 pills a day) and have found very few, if any, side effects. It has little or no effect on blood pressures in those doses. Occasionally we see constipation.
Q: Can it be combined with other medications?
A: We are going to set up another study to test the results of mecamylamine in conjunction with medications such as Risperidol and Haldol.
Reproduced from the New York City Chapter TS Newsletter, December 2000.
Safety of Nicotine Patches
Researchers at Stanford University School of Medicine have fo und that nonsmoked nicotine stimulates growth of blood vessels. Encouraging the growth of blood vessels can be beneficial in cases in which a patient has circulation problems. But it also can encourage growth of tumors, which need blood vessels to grow, and vessel-clogging plaque. When nicotine patches are prescribed for short-term usage to help a person stop smoking, there should be no problem. The question of the safety of them arises when the patches are used for extended periods of time, such as when people with TS self-medicate by using them to control tics.
New Test for Diagnosing ADHD A new 15-minute test developed by researchers at Harvard Medical School is hopefully bringing more objectivity to the process of diagnosing Attention Deficit/Hyperactivity Disorder. During the test, called OPTAx, a child sits before a computer screen and is challenged to respond to the appearance of moving stars. The speed and accuracy of the child's responses provide data on attentiveness and impulsiveness. The doctor transmits the data via the Internet to a database at Harvard where it is compared against the scores of 1,800 other children. A report is generated detailing 12 measures of inattention, impulsiveness and hyperactivity.
Generic Version of Prozac Now Available
The drug company Eli Lilly's patent for Prozac expired in August, paving the way for other pharamceuticals to produce fluoxetine, the generic name for Prozac. This antidepressent is widely prescribed for people with TS who have depression or OCD. Having a generic version will cause the price to drop between 25% and 40%, an appreciable cost savings, considering many health plans don't cover drugs prescribed for mental illness. At the same time, Lilly has come out with a once-a-week dosage of fluoxetine, still under their brand name of Prozac, and still protected by patent (thus making it more expensive).
The TSA and the Washington State Chapter do not endorse products, services or manufacturers. Such names appear only as information for our members. TSA assumes no liability whatsoever for information about or the use of any product or service mentioned.
Job Hunting and TS
by Anne Marie Hermann and Richard Hermann
Everybody hates job hunting. It is intimidating, stressful, anxiety-ridden, and uncertain of outcome. Moreover, all of these negatives are magnified if you also have to contend with a visible disability.
The fundamental questions for any candidate with Tourette's are: "What do I say to prospective employers about my disability?" "When do I say it?" and "How do I present it?"
Tilt the Odds in Your Favor Before addressing these fundamental questions, there is one very important thing you can do to improve your odds: try to identify employers who are more likely to be favorably disposed toward candidates with disabilities. Here are the best ways to targ et such employers:
Preliminary research pays big rewards and builds confidence. It will steer you toward potential employers that have experience with, and a positive attitude toward, considering job seekers with disabilities.
What Do You Say to a Prospective Employer and When Do You Say It?
As little as possible. Initially, when first communicating with an employer, you will be best served if you say nothing. Let your paper credentials (resume and cover letter) speak for themselves and get you in front of the interviewer. Your resume and cover letter should focus only on your qualifications for the position.
The track record of job candidates who reveal their disabilities early in the job-hunting process is not very promising. Employers are typically flooded with job applications. Rather than look for positive reasons to interview candidates, their initial concern is to pare down the pile of paper applications to a manageable few. The easiest way to do this is to take a "rejectionist" approach: looking for a reason to eliminate candidates. You do not want to present an employer with a convenient reason to reject you.
If you are concerned that your Tourette's might emerge during a telephone or personal interview, take the initiative and discuss it frankly with your interviewer up front. In that case, it is better for you to raise it than for the interviewer to bring it up upon observing or listening to you (which, by the way, is prohibited by the Equal Employment Opportunity Commission's Interviewing guidelines, but does not really affect employer conduct in the real world). If the interviewer comments about it first, you may want to reconsider working for his or her organization.
If you think you can make it through the interview, but that your Tourette's might be noticeable during the workday, you have a difficult decision to make. Do you go public now or wait and let the chips fall where they may later? The answer to this question is not easy and is highly individual, depending upon the "rapport" between you and the interviewer, the nature of the job for which you are applying, and many other factors. Employers do not like to be surprised.
How Do You Present It?
If you have to say something about your Tourette's, you should present it accurately as having little or no impact on your performance on the job. Be sure to mention if you are largely able to control it with medication and that the medication does not affect your ability to work.
Beyond that, the most important thing you can do is to rehearse for the moment when you might have to talk about your Tourette's. Do this in front of a mirror as well as in front of a spouse, relative, or friend with whom you can " role-play" the interview.
Prepare as You Would for Any Interview
Learn as much as you can about the employer's operation, products and services. Plan ahead to make a great first impression. Exude confidence. Look sharp. Be u pbeat. Be friendly. Be honest. Be on time. State how you can add value to the employer's business. And anticipate the unexpected.
Anne Marie Hermann is an attorney who has specialized in disability law and was producer and host of Law and Disability," a nationally syndicated radio program. Richard Hermann is a principal of Sutherland Hermann Associates, a career counseling firm, and the author of over 25 books on career transition.
Reprinted with permission from The Tourette Gazette, newsletter of the Greater Washington Chapter, Spring 2001.
Steps to Getting a Good IEP
Reed Martin, J.D.
September is often the time for your child's annual IEP review. Here is a good list of points to remember as you prepare for the meeting.
Before the Meeting:
At the Meeting:
Reed Martin is an attorney specializing in special education law. You can find more of his helpful information at his website, www.reedmartin.com
Special Education Students and the WASL
Some special education students with IEP's are not able to participate in the required state assessment test, the WASL (Washington Assessment of Student Learning). For those students, there is another way to gauge progress. The purpose of the Washington Alternate Assessment System (WAAS) is to implement an assessment and accountability system to include students in special education programs who are unable to participate in all or some of the general content areas of the WASL (reading, math, writing or listening), even with accommodations. The WAAS is designed to measure progress toward those IEP goals, which are aligned to statewide Essential Academic Learning Requi rements (EARL's), and to create incentives for movement, where appropriate, to full participation in the WASL. Commercially made tests may be used for students who need to participate in the WAAS, and these students are not required to have a portfolio assessment. Refer to the entire text of OSPI Bulletin #1901 at http://www.k12.wa.us/specialed/bulletins/bulletin.asp for more information.
Parent Group Forming
There is a new parent group forming in the Highline School District whose purpose is specialed. advocacy. They are planning to meet during the school day on the first Friday of every month. They also have an e-mail list serv set up. If you would like to subscribe to the list serv, send a blank e-mail to HSD-Unite-subscribe@yahoogroups.com. For further information, contact Rhonda Meyers at (206) 824-6195, bmeyersrl@qwest.net or Shannon Maas at (206) 248-3712, bshannontony@aol.com.
By Jai Kelly
The national TSA office has recently established the Washington D.C. office of the To urette Syndrome Association in response to the growing number of issues before the federal government which have a direct impact on those with TS and their families. Below is a summary of some of the current federal and state legislation which is of impo rtant to our community.
WASHINGTON STATE LEGISLATION
Ticket to Work - In spite of one of the most frustrating legislative sessions in recent history, some good news came of it. The Ticket to Work program was passed and signed into law by Governor Locke. This program will allow individuals on SSI and SSDI to keep their Medicare benefits, if necessary, if they find employment. Advocates for the disabled have worked for passage of this legislation for several years. This is just one example of how refusing to give up even after legislation has failed to pass year after year can pay off.
School Bullying - Legislation aimed at this was held up in the House of Representatives this session.
NATIONAL LEGISLATION
Family Opportunity Act - Senators Kennedy(D) of Massachusetts and Grassley(R) of Iowa are still pressuring the Senate Finance committee to take action on the Family Opportunity Act (S. 231/H.R. 600). This bill would allow middle income families of disabled children to buy into medicare when their own health insurance is inadequate. This is a very popular bill among both Democrats and Republicans. If the committee has not taken action by the August recess, please contact them and your Representatives and encourage them to let this legislation come up for a vote in the Senate. Because of its strong bipartisan vote, there is no reason this bill should not be let out of committee and voted upon.
Patient Bill of Rights - Rep. Norwood amended the original house version of the Patient Bill of Rights after discussions with President Bush by eliminating the patient's right to sue his/her HMO. National TSA opposes this amended bill. With a House bill now so substantially different than the Senate version already passed, the possibility is strong that no Patient Bill of Rights will become law this session. Let your Representative know you support the original version of H.R. 2563 with all of its patient safeguards intact.
National Mental Health Parity - Several bills are working their way through Congress.
S. 543 sponsored by Senators Wellstone and Domenici, would help end discrimination in health insurance coverage of neurological disorders. This legislation:
The Mental Health and Substance Abuse Parity Act of 2001, H.R. 162, would prohibit health insurance plans from charging different fees for inpatient-hospital day and outpatient-visit limits or applying difference deductibles, co-payments, out-of-network charges, and other financial requirements for mental health and substance abuse treatment than for other health services. Its provisions apply to individuals with any mental illness or substance abuse disorder.
The Medicare Mental Illness Nondiscrimination Act of 2001, H.R. 599, would end Medicare's historic discrimination against patients with mental illness which requires them to pay a much higher percentage of their medical costs.
The Mental Health Access Act, S. 3238b focuses on the problem of people with pre-existing mental disorders not being able to obtain insurance coverage in the individual market.
The Genetic Nondiscrimination in Health Insurance and Employment Act, H.R. 602, would establish a comprehensive law banning discrimination based on genetic information in both health insurance and employment. A similar Senate version of the bill is still in committee.
Education - Both the House and Senate passed reauthorization of the Elementary and Secondary Education Act (ESEA), H.R. 1 and S. 1. Since there are differences in the bills, they have gone to a conference committee. Both versions contain dangerous amendments that would repeal key components of the Individuals with Disabilities Education Act.
The Senate bill contains the Sessions (R-Ala.) amendment that would allow school authorities to cease educational services or segregate students for violations of the school code of conduct. For example, a child with Down Syndrome could be removed from the regular class for hugging a teacher or other student if a school code prohibits unwanted touching.
The House bill contains the Norwood (R-Ga.) amendment that allows for the cessation of educational services if a student with a disability violates the school code regarding use and possession of a weapon, illegal drugs or commits "aggravated assault and battery," which states would define.
These amendments will essentially repeal the following vital provisions of IDEA: Free, Appropriate Public Education (FAPE); Least Restrictive Environment (LRE); Individual Education Program (IEP) parent/educator partnership; and due process protections and safeguards. The national TSA recommends that these amendments be thrown out. A careful system for disciplining students, protecting the school community, providing procedural safeguards, and providing alternative placements for students that need to be removed from their regular learning settings was worked out in the 1997 IDEA revisions. If there are adjustments needed in the existing IDEA rules, they should be debated as part of next year's reauthorization of IDEA. Please contact your representatives and let them know you oppose the amendments.
Stem Cell Research - The issue of stem cell research remains very controversial in Congressional and Executive branches of government. The President has not yet revealed his position on federal funding for research involving stem cells. Stem cell research holds promise for treating many diseases. However, most stem cell research involves the destruction of human embryos. Recent legislation in the U.S. House of Representatives would outlaw the creation of cloned human embryos for any reason, including for the purpose of creating potentially therapeutic stem cells. It is theorized that the best way to get the benefits of embryonic stem cells may be to create cloned embryos from patients' own cells. The stem cells derived from the embryo would be identical to the patient's DNA and so would not be rejected. Such cloning of a human embryo has yet to be done. Stem cell research on surplus embryos from fertility clinics is not affected by this legislation, unless of course, attempts are made to clone them. The Senate has yet to act on legislation similar to that passed by the House of Representatives.
I would like to add a note of thanks to Leye Jeannette Chrzanowski, President and Executive editor of the Disability News Service. This news service was established in 1997 by Ms. Chrzanowski and Mike Ervin. Their information on disability related issues has been invaluable to me over this past year. Sadly, their News service will be closing down on August 7 due to a lack of funding.
...and don't forget that this is the time of the year for signing up to contribute to United Way or other payroll deduction programs. Please consider designating TSA-Washington State Chapter this year. A few dollars each month will hardly be felt by you, but will go a long way toward helping others in our state with TS.
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