CONNECTIONS

Newsletter of the Washington State Chapter of the Tourette Syndrome Association

Volume IX, Issue 2June, 2002

Chapter Planning Meeting

The board decided at its last meeting to hold a planning meeting in the fall, open to all chapter members, to assess where the chapter currently is, and where it should be headed in the next few years. The hope is to hear from a wide number of people about the activities, projects and goals they would like to see the chapter try to achieve, and also to identify some people who would be willing to share some of their time and talent towards those efforts. The event will take place in the Seattle area at a location still to be determined. We need people to help plan the event. Please see the Volunteer Corner.

Educator's In-Service

Our chapter is extremely fortunate to have been asked to be a co-sponsor of a training on TS for educators. Our good friend Jean Conklin (who although she is an Oregon resident has an adult daughter with TS who lives in our state and thus has been very generous with her time and support to our state chapter) was able to secure a grant of $24,000 from the Pipes Fund of Oregon to present this training. It is being co-sponsored by the ARC of Umatilla County in Oregon, and the Neurological Center in the Tri-Cities. Jean has graciously taken on the role of coordinator. We are still in the very initial planning stages of this day-long educator in-service. It is tentatively scheduled for April 2003. The location has not been finalized.
The purpose of the conference is to provide information about TS and related disorders to educators teaching at schools in eastern Washington and Oregon, areas which have traditionally been underserved in terms of educational conferences. The plan is to bring in a speaker from the national Tourette Syndrome Association. The speaker will use as a guide the TSA Educators' Curriculum, a large presentation binder which includes fully scripted modules, two videos and numerous overheads. At the end of this presentation, attendees will be given copies of this Curriculum, as well as other printed materials, to take back to their local school districts to use to train other school staff and administrators regarding TS.
This is an extraordinary opportunity for educators in eastern Washington and Oregon to receive the best information on dealing with TS students in the classroom. We are also intending to make the in-service available to parents or others outside the schools at a reduced rate. We are very grateful to Jean for developing this idea, securing the funding, and doing the legwork necessary to make it a reality. We will be giving you more details of progress on this in-service in future issues. In the meantime, if you live in eastern Washington, and are interested in helping make this a reality, please read more about it in the Volunteer Corner. Thank you to Jodi Benetti in Yakima who has already been busy helping us get information on eastern Washington school districts.

Goodbye

by Nanette Rosenthal

As this school year ends, I am bringing to a close six years on the board of the Washington chapter. I remember very clearly those early days on the board. When my oldest son was diagnosed with TS at age 4, I was desperate for information. I eagerly looked forward to receiving the periodic newsletters from the state chapter. Then one day, the newsletters stopped. I went to the monthly chapter meetings which were being held in Renton to see if I could get more information that way. I met a lot of nice people and heard some interesting speakers. Unfortunately, this was a hard time for the chapter board. They were just about to experience an almost total turnover which resulted in only their treasurer, Carroll Frye, left to keep the chapter functioning. It was obvious that more people were needed to step in if the chapter were to remain viable. Since I remembered how valuable the newsletter had been to me, I volunteered to be the newsletter editor. It was the only way I knew to keep a newsletter coming to my house! Luckily, a number of other people also volunteered to be board members at the same time, and so we started the slow process of rebuilding the chapter. Besides publishing the newsletter quarterly for the last six years, I have also been able to assist the chapter in other ways. Some of them are described below. Unless otherwise noted, there will be no one to take over these individual responsibilities when I step down.

Chapter files- Someone was needed to house the official chapter files, which were in a lot of disarray. With our co-president Roseanne Torgerson's help, I organized the current files and resources and continue to house all the chapter files, which have grown to about three file drawers.

Lending library - The board decided it was important to have a lending library of books, videos and audiotapes to lend to chapter members desiring information. I organized the small number of resources we had at the time and over the years have added a significant number of tapes and books to the library. I am thankful for Sue Bream as our lending librarian who now administers sending the materials to chapter members.

Support groups - The board felt very strongly that chapter members in other parts of the state needed places to go for support and for sharing resources and information. Over the years, I have assisted in setting up seven support groups throughout the state. As times has gone on, there is really only one group which meets regularly, the Federal Way support group (thank you Deb Smith and Zita McLaughlin!), but I still feel that we helped a number of people connect to one another, and we have been left with contact people in different parts of the state whom we can rely on when new families ask us for assistance.

Informational brochure - For our chapter to make contact with other groups and to spread information about TS, it was important that we have a document which we could disseminate. I wrote our chapter's informational brochure (stealing freely from other chapters' brochures!) which has been a very useful way to get the word about TS out. Thank you to all the chapter members who have taken stacks of brochures and disseminated them to various places around the state.

Bowl-a-thon fundraiser - It became obvious pretty quickly that if we were to have any programs as a chapter, we would need the money to fund them. I looked around at ways other chapters had raised money, and decided a bowl-a-thon was a good combination of a fun activity with a minimal number of volunteer hours needed. I have set up annual bowl-a-thons for the last three years with the help of a number of other volunteers (special thanks to Debi Betts and Jami Warren). The money raised has been well used.

Physician Referral List - Each chapter is responsible for compiling a list of physicians within their state which have expressed an interest in treating people with TS. We receive many phone calls and emails from people who are desperate for knowledgeable professionals to treat them or their family members. I have been able to expand our list over the years (with the able assistance of Leah Currier). This is a continuing process. We currently have a list of about a dozen professionals waiting final approval from the national office to be placed on the list.

IDEAS Conference - The annual IDEAS Conference in Spokane which brings together special ed. professionals from around the state is a perfect way place for us to disseminate information about TS. For the last three years I have coordinated having informational booths there. This year we also were able to bringing a speaker from the national office, Jackie Favish, to give a presentation. Thank you to our Spokane chapter members who have assisted with this over the years: Pam Mancheni, Laura Hainsworth, Noreene Bailey, and Tonja Faraca.

Schiff grant school packets - We were extremely fortunate to have the Schiff Foundation fund two grants for us to send informational packets on TS to 90 school districts throughout the state (thank you Mary Clayton Enderlein for helping us make the contact with the foundation). Bill Zook wrote the grant, and I chose the districts we would target and coordinated getting the packets sent out and doing follow-up phone calls to the districts to see how they were using the packets. Thank you to Judy Swain, Robin Harkey, Roseanne Torgerson, Bernadette Witty and Kim Gorman for helping to send the packets out and making lots of phone calls.

Email - As email became more prevalent, I became the email counterpart to Meg Howard-Petosa's phone info-line. I have answered many, many emails from people needing information, resources, and referrals. Board member Adam Fuller has recently taken over this duty (see article on page 12 regarding our new email address).

Secretary - Every board needs a secretary. Unfortunately, for the last five years, ours has not had one. So Roseanne Torgerson and I have shared this duty, switching off writing meeting minutes every other month.

Mailing List - The chapter mailing list six years ago consisted of about 500 people. I have maintained this list as an Excel spreadsheet since then. It now includes 950 people. I receive about ten new names a month from various sources. Besides updating the mailing list, I also send packets of information to these new people. Of course, there are also changes of address which need to be noted and people who ask to be taken off the list throughout the month.

Newsletter - For six years I've been faithfully churning out this newsletter. It started as a one page flyer and currently tends to be a 12-page publication. I've done my best to give the chapter members as much useful, objective, up-to-date information as I could find having to do with medical, educational, adult, legislative, and chapter issues. Thank you so much to Jai Kelly for her legislative article contributions, Robin Harkey and Hazel Rosenthal for helping with bundling and labeling the newsletters and Ken Clogston at Gateway Printing for printing the newsletter at cost. This is still my baby, and even though I would like to relinquish publishing this as well, I remember too clearly how I felt six years ago when those newsletters stopped coming to my mailbox for me to walk away from this commitment without being certain someone else is ready to take it over. But I know there must be other people out there in Washington who love to write, would enjoy receiving information about TS and related subjects from all kinds of sources throughout the country, and realize how important it is for our chapter to have a regular publication which brings us together.
Whew! Sounds like a lot of work! And it is - too much for me to continue to do. My personal situation has changed in the past few years, making it harder for me to keep up with these commitments. I started a part time job two years ago; this year my second son was diagnosed with TS; and my oldest son is now in middle school. All those years of trying to convince his elementary school teachers that his organizational skills were going to make it difficult for him to succeed as he got older have been borne out this year as he struggles through massive amounts of homework in the gifted program at his middle school. He needs me more now then he did in elementary school. It's time for me to advocate for my family in the same manner that I've been trying to do for others over these past six years.
I've been so fortunate to work with an incredible group of people on the board, all of whom are so dedicated, despite having their own plates full with TS at home. Besides being great co-workers, they are a lot of fun! I've also had the opportunity to get to know over the phone, email and sometimes in person, many other chapter members who have enriched my life. Being on the board has been a tremendous advantage over the years in making me privy to the newest research and information about TS. As a board member, I receive special mailings from national chock full of useful ideas and good information. I've also been privileged to attend the national TSA convention four years ago paid for by the chapter, which enabled me to make wonderful connections with other chapters across the country. I've had the opportunity to personally meet and chat with a number of fascinating people either with TS or knowledgeable about TS who have been speakers at our various conferences and mini-conferences.
So I want to make two points: 1) The personal benefits of being on the board are great, and 2) if some new people don't step up to the plate, the chapter will no longer be functioning at the level it currently is. One of these days that newsletter might stop coming to your door! Please take a few minutes to look over the wish list in the volunteer corner to see how you can make a contribution.

2001-2002 Chapter Budget Passed

In April, our chapter board passed a new budget for FY 2002. Again, it is a very modest budget. We are proud of the fact that we have continued to work within our budget over the years. However, in order to expand our programs in any significant way, we will need additional funds either through donations or through fundraising.

Expenses Actual

2001

Budget

2002

Print/Copy$678$900
National Conf.$0$900
Postage$838$1,000
TSA Publications$370$800
Meeting Supplies$152$200
Office Supplies$69$150
Misc.$51$100
Support Grp. Funds$0$100
School Awareness$323$1,000
Lending Library$0$100
Fundraiser$354$400
Conferences$2,385$5,500
Advocacy Grp. Membership $200$200

Total

$5,420

$11,350

Income Actual

2001

Budget

2002

United Way$1,324$1,600
Unified Dues$1,339$1,400
Combined Federal Campaign$282$100
Cash Donations$164$200
Fundraiser$1,916$2,000
Grants$1,000$3,000
Conference Registration$270$3,000
Savings Account Interest$25$50

Total

$6,320

$11,350

Volunteer Corner

We have lots of opportunities this time around. If we don't find volunteers for these tasks, these services will soon no longer be available in our chapter. If it's noted to contact Roseanne Torgerson, she can be reached at (206) 322-4754 or rtorgerson@cortland.com. Otherwise, contact the editor at (206) 367-4491 or TSAWASH@aol.com.

Board Members - We are in need of a number of new board members to help us plan our chapter's goals and various activities. We currently meet the first Tuesday of each month (Sept-June) at Valley Medical Center in Renton from approximately 7-9pm. The date and location could be changed depending on the group of board members we have. Besides the two hour commitment each month, board members can take on other responsibilities as they are able and interested in. Contact Roseanne Torgerson.

Chapter Planning Meeting - Volunteers are needed to help plan a fall event in the Seattle area whose purpose will be to look at where the chapter is currently and where it should be going in the next few years. Contact Roseanne Torgerson.

Secretary - This is a board position. Responsibilities would include attending board meetings and typing up minutes to distribute to board members (about four hours each month). Contact Roseanne Torgerson.

Conference Planner - This could be a board position if desired. We are very close to having the plans in place for the medical conference we had to cancel this spring. However, if we don't have a conference planner to make contact calls with the speakers and be a liaison with the conference facility, we will not be able to hold the conference. Many of the tasks involved in this could be delegated to other volunteers such as making name tags, ordering food, writing up the brochure, and handling registration, but someone needs to be the main point person to do tie it all together. Contact Roseanne Torgerson

Educator's In-Service - See page 1 for full details of this planned event. We need volunteers for many aspects. They include: Liaison with the conference coordinator; Procuring AV equipment for the day of the event; Copying and distributing printed materials which will be given to conference participants; Public relations in the form of invitations, announcements, advertising dissemination, etc.; Procuring continuing education credits for conference participants; and Working the event. This is a great opportunity for people who live in southeastern Washington! This will benefit the school districts in your area greatly; help make it become a reality.

YADA Days - We need volunteers to work at activity booths or give very short presentations for Youth Awareness Disability Assemblies being held at Seattle elementary schools. TS is represented along with a number of other disabilities. Planned dates so far are: 6/11-12/02 at Wing Luke, 10/7-8/02 at BF Day, 11/14-15/02 at Kimball, 12/5-6/02 at Arbor Heights, 2/19-20/03 at Coe and 4/24-25/03 at High Point. Volunteers can work for all or part of the two-day event. Contact Roseanne Torgerson.

Lending library - We have a lending librarian currently, but we need to have someone who is willing to watch for types of books or videos that would be useful for the library, and then make those purchases with money that has been allocated from our chapter budget each year. This person should also update the index we have to the library each time new material is needed, and then forward the new material to our librarian. Occasionally when there are TV shows that feature TS, the person would tape the show for inclusion in the library. This job would probably take only about an hour a month, and the person could live anywhere in the state.

Support groups - Occasionally when people throughout the state volunteer to lead a support group, there needs to be a person who will give advice on how it should be set up, show the leader how to affiliate their group with our chapter and with TSA, send out invitations to the first support group meeting, provide a mailing list of people in our chapter that live in that geographical area, and then be a contact and support person for the support group leader. The amount of time this would take depends on how many support groups are active or about to be started. Currently that number is very small. The person could live anywhere in the state.

Bowl-a-thon or other fundraiser - In order to keep our chapter functioning, we need to raise money! Anyone who is willing to plan either another bowl-a-thon or some different type(s) of fundraiser(s) is necessary to keep us moving forward with our goals. Fundraisers can be planned in any part of the state and will take varying degrees of involvement depending on the type of fundraiser.

Physician Referral List - Someone is needed to send questionnaires to doctors and other health care professionals that have been identified as having some interest in treating patients with TS. The person would then track when the questionnaires are returned and forward the ones we would like to have on our physician referral list to national TSA for their final approval. The list would then be updated periodically. This would take about three hours a month and could be done by anyone in the state.

IDEAS Conference - For the last three years we have had an informational booth at the special education IDEAS Conference in Spokane at the end of January. Someone is needed to fill out the paperwork with the conference presenters to enable us to have an exhibit there, order publications to disseminate and find volunteers to work at the booth. Work for this takes place between September and January each year and takes about three hours a month. It could be done by anyone in the state.

Mailing List/Informational Packets/Publications Coordinator - Someone is needed to take over the chapter mailing list. It is in an Excel spreadsheet format and contains about 950 entries. Approximately ten new entries are forwarded to you a month from various sources. Some of those new entries require sending an informational packet of materials. The mailing list is used to generate labels for newsletter mailings four times a year and very occasional other mailings. The list needs to be updated periodically with address changes and people wishing to be removed. New publications from TSA would be ordered several times a year as needed, and mailed to people requesting information. This job would take approximately five hours a month, and probably would be best done by someone living in the greater Seattle area.

Newsletter - The newsletter is published four times a year. It takes about ten to twelve hours a month to gather materials of interest for inclusion, write articles or solicit others to write them, edit articles, put them in newsletter format (I use Publisher, but Pagemaker could also be used), take to the printer and then to the post office.

TS Informational Pamphlets in Libraries
Jean Conklin, who is coordinating the educator's in-service (see article above), is also the author of the book Music in the Midst of Chaos (reviewed in our March 2000 Connections, the text of which is available on our website). This book is about her experiences as a mother living with and advocating for two disabled daughters (one with TS, the other with Cerebral Palsy). She recently had copies of her book placed in libraries around our state. We were able to include our chapter informational brochure with that, so now there is information on TS and how to connect with our chapter in 300 libraries around the state. Thank you Jean for giving us the opportunity to raise awareness in this way!

Recent Contributions
We are very thankful to the following people who have recently made contributions to our chapter:

      Ken Clogston
      Michael & Wendy Spektor
      Jeanne Serrill

Athletes for Kids Mentoring Program
In the December 2001 issue of Connections, I wrote about 9-year old chapter member Craig Moscaret, and the high school mentor his family had found for him to help increase his self-confidence and sense of belonging. Craig's parents, Liz and Ken Moscaret, along with the father of Craig's mentor have expanded this program. The result is Athletes for Kids, a mentorship program which matches high school athletes with special needs elementary school students. It is currently a pilot program on the Sammamish plateau. For the next school year, the plan is to recruit mentors from Issaquah and Liberty high schools. The hope is to get corporate sponsorship which will enable the program to grow throughout King County. The mentors are required to spend at least eight hours a week with their charge. We will keep you up-to-date on this program as it moves out of its pilot stage.

Revamped Website

Board members Bernadette Witty and Brad Hawkins have been working very hard over the past few months to accomplish one of our chapter's goals for this year: expanding our website. Please take a look at their handiwork. The address is www.tourette.net/wa. This new website has a lot more relevant information and resources that you should find very useful.

New Chapter E-mail Address

Please make a note of the fact that our chapter's official e-mail address is now tsawashington@hotmail.com. Please use this address when needing information, resources or support (or call our info-line at (206) 781-9035). Our old address, TSAWASH@aol.com, is still functioning but is now just for people who need to reach Nanette Rosenthal directly. And please send us your e-mail address. We periodically send out notices of upcoming events and other useful information that is too time-sensitive to make it into the newsletter.

NEWS YOU CAN USE

Book on ADD
Here's a new book that you might find useful when dealing with a child with TS plus ADD. "Tourette's and Attention Deficit Hyperactivity Disorder - Toughing It Out at Home and at School." It was made possible by a grant from the Louisiana Department of Education Office of Special Educational Services and consists of contributions from doctors, attorneys, Ph.D.'s, and lay people. The list price is $18. Contact the Baton Rouge Tourette's Support Group c/o John B. Kent, Jr. 895 Dubois Dr., Baton Rouge, LA 70808 or (504) 766-4002. Thanks to chapter member Holly Gray for her tip about this book.

Disability Benefits
For those applying for disability benefits due to TS, here is a website that offers free advice and information on Social Security and Supplemental Security Income disability benefits. The site is http://www.thedisabilityexpert.com. The information on the site is provided by a former Social Security disability determination specialist. If you click on "Feedback" on the left side of the screen, you can ask your own questions about disability benefits. One user found the article "How Your Condition Affects Your Ability to Function: The Key to Disability Benefits" to be particularly helpful.

Positive Behavioral Support
We have had numerous articles in this newsletter about the use of positive behavioral support as a means of dealing with problem behaviors in school. Now there's a new video produced by the Center on Positive Behavioral Interventions and Supports which demonstrates the implementation of discipline strategies proven to decrease students' disruptive behavior. The 23 minutes video is entitled "Positive Behavior Support in Schools" and is designed for teachers, administrators, school personnel and parents. It addresses the following core features of school-wide positive behavior supports:

The cost of the video is $15. To order, contact Claudia Vincent at clavin@oregon.uoregon.edu or (541) 346-2486. More information about the video is available at: http://www.pbis.org/english/default.htm.

Special Ed. Resources
The web site www.ideapractices.org answers your questions about the Individuals with Disabilities Education Act, and provides a variety of resources for parents of disabled children, including online documents, print materials and videos published by the Family and Advocates Partnership for Education and other organizations. View the resource collections at www.ideapractices.org/resources/index.php.
Reprinted from the Connecticut Chapter Newsletter, Winter 2002.

Disability Issues
The American Association on Mental Retardation in Washington, DC, has created a new Internet-based news service called RADAR that monitors more than 150 major newspapers and trade publications for news coverage of national and international disability issues. Examples of major issues that RADAR will track include abuse, housing, transportation, employment, and aging. Information will be summarized in biweekly reports and stored in an online database. Keywords are added to the summaries to allow researchers to track developments on particular subjects over time at the national, regional, state or local level. RADAR can be viewed by visiting http://www.radaraamr.com/.

Resume Database
The National Business & Disability Council offers a free service for college graduates or soon-to-be college graduates. This resume database for job seekers with disabilities posts your resume on the Internet where it will be viewed by top companies. For more information, call 1-800-839-6163 or email Resumeposting@ftei.com. To post the resume, go on-line to www.business-disability.com. Click on "Job Seekers" then on "Post Resume." You will be prompted to enter your email address and create a password of your choice.

LEGISLATIVE UPDATE

by Jai Kelly

MENTAL HEALTH PARITY

One of the most important issues I have covered since doing the legislative update section of the newsletter is the inadequate insurance coverage of the costs of mental health treatment. Many health insurance companies limit coverage and many HMO's charge substantially more for treatment of mental health care than they do for other medical care. Or they may place limits on the number of visits allowed or place a cap on the amount paid for inpatient and/or outpatient visits. What many people do not realize is that parity in insurance coverage is not a new idea. In fact, the Bureau of Labor Statistics found that the percentage of health care plan participants whose mental health benefits for inpatient care were the same as those for traditional medical benefits fell from 54% in 1980 to 14% in 1993. The overall value of mental health benefits has also continued to decrease. From 1988 to 1997, the value of such benefits has decreased from 6.8 percent to 3.1 percent as a proportion of the total cost of benefits.
There is no defensible reason for this. Still, millions of individuals and families find themselves unable to afford mental health treatment because of this disparity in insurance coverage. Even though Tourette Syndrome has been shown to be an inherited, neurobiological condition, it is classified as a mental health disorder in the The Diagnostic Statistical Manual of Mental Disorders - IV. This is the reference book which most insurance companies and HMO's use to determine if a condition is considered a medical or psychiatric illness. As a consequence, many people with TS find that insurance coverage for their condition is greatly limited or denied altogether. Some have even found that limitations are imposed on their visits to neurologists because TS is considered a mental illness by insurance companies. Because of this, TSA has worked to support legislation which would prevent insurance companies and HMO's from limiting mental health insurance coverage or charging more for office visits or inpatient treatment. It has been a long slow process, but it appears that new mental health insurance parity legislation has a good chance of being passed at the Federal level.
In the Senate, bill S. 543 sponsored by Pete V. Domenici (R-NM) and Paul D. Wellstone (D-MN) has already passed. This bill would eliminate disparities in the coverage of mental health conditions. It applies only to companies with more than 50 employees. On March 20, 2002, Representatives Marge Roukema (R-NJ) and Patrick Kennedy (D-RI) introduced the Domenici-Wellstone bill, "Mental Health Equitable Treatment Act," in the House. The bill is designated H.R. 4066, and has the same title as the Senate bill. The House bill had close to 200 co-sponsors as of early May.
The main opposition comes from key GOP lawmakers who claim it would significantly increase the cost of providing health insurance. However, studies show that parity legislation causes very little increase in insurance costs. States which have enacted parity laws have found insurance costs increase by an average of 1-2%. In some cases, costs even dropped. Congressional Budget Office estimates that the passage of S.543 would cause an increase in premiums by an average 0.9%. Other studies show a possible increase of 1% or $1.32 a month (An Actuarial Analysis of S. 543, the Mental Health Equitable Treatment Act of 2001." Atlanta, GA: PricewaterhouseCoopers, July/August 2001). A provision of the current parity law would exempt companies from the law's requirements if their health insurance costs increase more than 1%. A GAO report has shown that very few companies showed even this level of cost increase.
Fortunately, President Bush has recently made very strong statements in support of insurance parity and may very well persuade House Republicans to pass some form of parity legislation. The President has stated: "Our health insurance system must treat mental illness like any other disease," but also cautioned that the legislation should "not significantly run up the cost of health care." He stopped short of endorsing a specific bill, but both sides believe he will work with lawmakers to enact legislation which would provide increased insurance coverage for at least most serious mental illnesses such as major depression, bipolar disorder, schizophrenia and obsessive-compulsive disorder.
With mental health insurance parity finally getting the attention it deserves, we hope you will take the time to contact your Senators, Representatives and the President and let them you know you support this legislation. This may be the best opportunity we have had yet to achieve passage of this very important legislation.
Jeremy R. Scott, Government Relations Specialist with the Tourette Syndrome Association has provided the following information for those interested in assisting us in getting this important legislation passed:

Please contact your Representative by email, fax, or phone, and urge him/her to support the new Roukema mental health parity bill (H.R. 4066).

The Capitol Switchboard number for the House is (202) 225-3121, and asked to be transferred to your Representative. You can access the H.R. 4066 through this link: http://thomas.loc.gov/cgi-bin/bdquery/z?d107:h.r.04066:.

Sample message:

"I am (calling/emailing/faxing) to urge (Congressman/Congresswoman) to please cosponsor H.R. 4066, the new Roukema mental health parity bill. This bill is critical to me and my family, because it will ban arbitrary limits on needed mental health services, particularly for Tourette Syndrome. Most insurers and health organizations code TS as a mental illness."

Locally, the Washington State Representatives and their Washington D.C. contact numbers are:

Note: the following numbers are long distance. You can also find local phone numbers in your local telephone books.

Rep. Jay Inslee 1st Congressional District (202) 225-6311
Rep. Rick Larsen 2nd District (202) 225-2605
Rep. Brian Baird 3rd District (202) 225-3536
Rep. Doc Hastings 4th District (202) 225-5816
Rep. George Nethercutt 5th District (202) 225-2006
Rep. Norm Dicks 6th District (202) 225-5916
Rep. Jim McDermott 7th District (202) 225-3106
Rep. Jennifer Dunn 8th District (202) 225-7761
Rep. Adam Smith 9th District (202) 225-8901

REAUTHORIZATION OF IDEA

Also of interest is the reauthorization of IDEA, the Individuals With Disabilities Education Act. Hearings are being held on possible changes to this Act, which is the basis of special education programs throughout the country. The most controversial section deals with the provisions concerning disciplining children with disabilities. Recently there has been the misconception that special education students are more prone to violence and that school officials are not allowed to effectively discipline these students due to IDEA. However, the General Accounting Office released a report on school discipline which showed that special education students who are involved in serious misconduct are disciplined in a similar manner to regular education students. A large majority of the school principals believes that IDEA's disciplinary procedures have either a positive or neutral effect on school safety and orderliness.
Under IDEA, students who are felt to pose a safety concern can be suspended from school. Fortunately, even when these students are not allowed on campus, the schools are still required to provide educational and counseling services in home or at appropriate off school sites. In this way, the safety of all students is protected and the services needed by special ed students are continued. To discontinue service would hurt not only the students affected, but all of us who must deal with the consequences of untreated disorders in these students.
The Senate Committee on Health, Education, Labor and Pensions held a hearing on IDEA on April 25th. The testimony focused on behavioral supports in schools. The subject of disciplinary measures under IDEA was discussed. Testimony supporting the importance of IDEA as a safeguard for children with disabilities was presented. Also of importance was the endorsement of the use of positive behavioral interventions and supports by the Special Education Division of the Department of Education. Positive behavioral interventions have been shown to minimize the need for future discipline and prevent disruption by all students in the classrooms. This use of positive, preventative action by educators heads off problems and addresses the unique needs of special education students. Let your Senators and Representatives know that you support IDEA in its current form and the implementation of positive behavioral interventions and supports instead of abandoning children who are challenged by the current discipline measures in many schools.


Senator Maria Cantwell:
State Offices 1-888-648-7328


Washington, DC Office
464 Russell Senate Office Building
Washington, DC 20510
202-224-3441
202-228-0514 -FAX


Senator Patty Murray
Seattle Office
Jackson Federal Building
915 2nd Avenue
Seattle, Washington 98174
Phone: (206) 553-5545


Washington, D.C. Office
173 Russell Senate Office Building
Washington, D.C. 20510
Phone: (202) 224-2621
Fax: (202) 224-0238

MEDICAL NEWS

Safety Tests on Drugs - Three US Senators have introduced a bill which would require the Food & Drug Administration (FDA) to reinstate a rule requiring drug companies to perform safety tests on adult medicines that are often given to children. In March, the FDA has said it would suspend the rule for two years to study whether a new law that provides financial incentives to drug companies to perform tests has made their rule unnecessary. The Senators, however, say that the FDA rule was designed to work in conjunction with the rule to ensure that drugs given to children receive proper testing.Condensed from 4/18/02 Seattle Times article.

Sleep Problems are Linked to Attention-Deficit Disorders - Researchers have found that children who snore nearly double the risk of being inattentive and hyperactive, showing a link between sleep problems and attention-deficit disorders. The study doesn't answer the question of whether one condition causes the other, but researchers think that snoring and other sleep problems could sometimes be a cause of ADHD because children often express sleepiness by being inattentive and hyper. If your child is a snorer or seems to be a very restless sleeper, and exhibits ADHD-type symptoms, it may be worth bringing it up with the pediatrician.

New Program to Treat Asperger's On-Line - One of the hallmarks of a person with Asperger's Syndrome is the difficulty he/she has with social contact. Microsoft Research and the University of Washington's Autism Center have developed a software program called KidTalk whose aim is to teach social skills on-line. KidTalk looks like a chat room with lines of text from different participants running down one side of the screen and smiley-faced icons representing the participants on the other. But instead of just having the kids chat, the program presents them with a script for social interaction and asks them to perform specific social tasks. Kids who perform well are rewarded with points and smiling faces. Those who chat too much or not enough see their over-sized face icon move away from the group. A therapist moderates the session and can send messages to the participants privately, offering tips and rewards. Felice Orlich, a clinical neuropsychologist at the UW who helped develop the program says that it is meant to reinforce social skills that kids learn in a social skills group, or also for kids who live in more remote areas and don't have access to such a face-to-face group. Condensed from a Seattle Times article, 3/11/02.

Adverse Drug Reactions in Antipsychotic Drugs - The FDA and the a physician from Duke University have reported a possible link between the use in adolescents of the new antipsychotic drugs clozapine (Clozaril) and olanzapine (Zyprexa) and elevations in blood sugar levels. How the drugs cause this hyperglycemia is unknown. Three adolescents also developed an inflammation of the pancreas (pancreatitis); one died from it. If your child is taking either of these two drugs, you should discuss with the child's physician the possibility of routine monitoring for hyperglycemia since there are currently no approved guidelines for monitoring blood sugar with these drugs. Taken from the PA-TSA News, April 2002.

Medical Book on TS - Volume 85 in the Advances in Neurology series focuses exclusively on Tourette Syndrome, presenting a comprehensive account of the most recent achievements worldwide in the study and reatment of TS and related neurobehavioral disorders. A major area of emphasis is the relationship of TS to co-morbid and associated conditions. The editors are Donald Cohen, MD, Joseph Jankovic, MD and Christopher Goetz, MD, all well-known professionals in the area of TS. To order, call 1-800-638-3030, email orders@Lww.com, on the internet at www.Lww.com or from your local medical bookstore. The ISBN number is 0-7817-2405-8.

OTHER RESOURCES/UPCOMING PROGRAMS

Resources for Thurston County Residents
If you live in the Thurston County area, here are a few resources you might want to take advantage of which are sponsored by the Parent to Parent Support Program of Thurston County. All meetings are held at their offices at 420 Steele Street SE, Olympia. Contact them at (360) 352-1126 or Olywap2p@aol.com.

Sibshops - These meet on the second Saturday of each month and are designed to give siblings of special needs kids a time when they can have fun and feel special too.

Fathers' Network - The Fathers' Network meets the first Saturday of each month, and is meant as a support to men facing the challenge of raising children with special needs. Childcare is provided. For more information, call Robert Perretz-Rosales at 352-0303 or email kuhlkat@earthlink.net.

Bridges to Special Education - Parents of children in special education throughout Thurston, Lewis and Mason Counties meet monthly for support, discussion and to hear speakers. Contact Parent to Parent for information about dates and times.Sensory Integration Dysfunction Support Group - This group meets the second Tuesday of each month from 7-9pm. Call Linda at Parent to Parent for more information.

Teenagers with AD/HD
This all-day conference, sponsored by ADD Resources, the Bentley Center, the Learning Disabilities Assoc. of Washington, Washington PAVE and Overlake Hospital will offer sessions on "Teenagers with AD/HD," "Medications," "Problem Management," "Working with the Schools," and simulations of problem situations offered by the audience. 

Date:       6/8/02
Time:       8:30am-3:00-m
Location:   Overlake Hospital Conference Center,
              1035 116th Ave. NE, 
              Bellevue
Cost:       $45 at the door
Contact:    (253) 759-5085 or addadhd@attbi.com.
Flyer can be found at www.addult.org
Employment Conference
The annual Employment Conference sponsored by the Washington Initiative for Supported Employment brings together self-advocates, families, educational personnel, state and county staff for information and regarding employment of people with disabilities. Sessions include "Supporting People with Mental Illness in the Job Development Arena," "Stress in the Workplace," "Breaking Down Brick Walls: Putting Self-Advocacy to Work," and others. 
 
Date:      6/19-21/02
Location:  Central Washington University,
             Ellensburg
Cost:      Varies - from $145-$230
Contact:   (206) 343-0881, ext. 115
Conference on Asperger's
Dr. Tony Attwood, a psychologist who is expert in the field of Asperger's Syndrome, is coming to Seattle to present a full-day conference. It is sponsored by Future Horizons. 
Date:      7/13/02
Location:  Shoreline Conference Center
Contact:   1-800-489-0727 or www.futurehorizons-autism.com
National Conference
The Tourette Syndrome Association holds a conference every two years. This year the conference will be held October 31 thru November 3rd in Alexandria, Virginia at the Hilton Alexandria Hotel, Mark Center. Besides the general sessions which are open to all registered participants, there will be sessions for specifically for leadership training, medical professionals, those who are new to Tourette Syndrome, and youth. This is a great opportunity to make new friends and connections from all over the world as well as hear the latest in research on TS and strategies for dealing with it at school and at home. For more information, contact TSA at (718) 224-2999 or ts@tsa-usa.org.

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