CONNECTIONS

CHAPTER NEWS

President's Corner

Hello everyone. I am writing this just days after our May medical conference. What a way to kick off the official "National Tourette Syndrome Awareness Month" which is May 15 to June 15. Although we have yet to have this officially proclaimed in Washington State, there is no doubt in my mind that we have certainly contributed to an enhanced awareness and understating of Tourette Syndrome through the medical conference (see article below).
Right now I am looking forward to a little break with my family to relax and refresh as it has been a very busy year. The other big thing that happened was attending the National TSA conference in Virginia in April (yes three weeks before our own conference!). Please refer to my separate article on that as well. So conferences have been the focus of my attention of late and after I get a chance to catch my breath, I look forward to looking at other areas for our chapter. Every summer we hold a retreat planning session. This is a very productive day where we spend the first part looking at what we did in the previous year, what worked, what didn't work. We then think about what our chapter members want from us in terms of services we provide and projects to focus on. Using all that information, we come up with a long range plan for the next 12 months. It is an effective tool that helps us keep on track and ensure the projects we choose to pursue are in line with our overall goals. From the conference evaluation forms, we gathered a little data on what types of conferences our members would like. We also received feedback from adults that attended that there is a need for gatherings of adults with TS. Whether this be in formal conferences, support groups or just social outlets we are not sure, but the area definitely needs further exploration (for those in the Seattle area, see the information on page 10 on an adults with TS get-together). We are always seeking the input of our members, so please let me know areas that are important to you.
Some of our priorities will be to continue our participation in Youth Awareness of Disability Assemblies (YADA), to continue to provide education and advocacy support and to build on our public relations and political advocacy. We would like to pursue new areas like expanded services for adults and greater networking opportunities for families. Foremost however are grant applications and fund raising, as with the inexpensive ticket prices for our conference, our funds have been left somewhat depleted. Volunteer recruitment is also an ongoing priority for us. Since our chapter is 100% volunteer based, we can only do as much as the people we have. Thank you to the four people (Sheri Griffin, Margreet de Leeuw, Claudia Weber and Martha Hankins) who filled out the volunteer sign-up form at the conference. I look forward to working with you.
Unfortunately we have yet to have a person come forward as Newsletter Editor, although there has been some interest from a few people that could possibly help with the content. Our board has to seriously evaluate our newsletter situation. We hate to stop production because we know this is such a vital source of information for people. For some, this is the only contact and source of reliable TS information and resources. This will be at the top of our agenda for our summer retreat and it may cause us to reevaluate some of our other priorities and make careful choices about the projects we pursue. I would again encourage you to give this your careful consideration. Being Newsletter Editor is fulfilling such a vital role and you would be helping so many people in Washington State, besides arming yourself with the latest and greatest in information and contacts. Please call me if you would like to discuss this further.

Finally I wish everyone the best for a great summer and I hope to see you at the Summer Picnic on August 28!
 

TSA Medical Conference Report

We held our medical conference on Friday, May 14 and Saturday, May 15, 2004. Both days were a tremendous success and it would not have been possible without all the people involved who contributed to such a successful event. First I would like to thank Dr. Samuel Zinner who was the program chair for both days. Dr. Zinner helped me pull the program together and organized the following speakers to present on a variety of topics: Roger Freeman, M.D., John Piacentini, Ph.D., Robert Reichler, M.D., and Harlan Gephart, M.D. Without the efforts of Dr. Zinner, the conference would not have been possible. On behalf of our chapter, I would like to sincerely thank all the speakers for so generously donating their time Friday and Saturday, and to Dr. Piacentini for flying from Los Angeles and to Dr. Freeman for driving here from Vancouver, BC. We are also grateful to Eli Lilly, Inc. and McNeil Pharmaceuticals for the financial support they contributed to help make this conference a reality.

Friday Event
The Friday event was targeted to the medical and professional community and offered continuing education credits. Our chapter co-sponsored this event with Children's Hospital and Regional Medical Center. There were approximately 125 participants, with a variety of backgrounds, including pediatricians, family physicians, psychologists, nurses, educators and other professionals. We are so pleased to be extending the education of Tourette Syndrome and its associated conditions throughout the medical and professional community. There was some excellent discussion and we hope that the attendees can take the information back to their practice and workplace and continue broadening the awareness of Tourette Syndrome. We were also able to get a few names of people who may be interested in our Physician Referral List and we will be following up with these people. Expanding our Physician Referral List is one of the major priorities for our chapter.
The final session was a panel discussion. Represented on a the panel was a young adult with TS (board member Jaime Biava), a parent of a child with TS, long-time PAVE advocate, and former chapter president (Fon Schrup) and a school nurse (Samara Hoag). During the discussion, the medical and professional community was exposed to real-life stories about living with TS and so could relate the information they heard in the talks to real-life situations. For many of these people, it would have been the first time they had ever seen anyone with TS, which of course is much better than reading about it in a text book. I hope they left with a greater understanding and empathy for the challenges faced by those in the TS community as well as the realization of how important it is to get an accurate diagnosis early on. Thank you again to all the panel members for their openness in telling their stories.
The Friday event was video recorded. To obtain a copy, contact Marianne Gonterman at Children's Hospital and Regional Medical Center at 206-987-5706 extension 2.

Saturday Event
The Saturday event was targeted to individuals with TS, their families and friends. We had a tremendous turnout with many registering on the day as well. The total number of adult attendees was around 140 with around 50 children attending the Children's Program. The speakers were the same as on Friday with the exception of Dr. Reichler who talked on OCD Friday. We would have loved to have had Dr. Reichler join us on Saturday, but since we were allowing so much time for question and answer, we simply did not have the time to fit everyone. I hope we can get Dr. Reichler to talk to us next time around. Dr. Zinner, Roger Freeman, M.D., John Piacentini, Ph.D. and Harlan Gephart, M.D. all gave very informative talks and together covered a wide range of subjects. Although we had allocated a generous 30 minutes for question and answer, it still did not seem to be enough. A lack of sufficient time for questions often arises in our conference feedback, and although we did our best to accommodate this, it is always a difficult struggle between balancing a wide range of topics and incorporating enough time for questions.
I am in the process of going through the evaluation forms and so far there has been some very good feedback along with some helpful suggestions. I would like to thank every person who completed an evaluation as this information is vital for us. When reading the comments, it occurred to me that I did not put a place for a name and contact number which is a shame because I would certainly like to be able to follow up with people who had some great ideas and suggestions. The majority of the Saturday attendees were parents of a child with TS. Most people stated as their goals their desire to learn more information and gain a better understanding of their children's behavior. Most felt that their goals were met and for those who said they were not, they gave helpful suggestions. It is difficult to summarize all the results especially since there were contrasting comments from one end of the spectrum to the other. For example some said the question and answer period was not long enough; some said it was too long. Some said that the pitch of the discussion was too technical and should have been directed at more of a lay audience; some said that the doctors should assume a sophisticated audience and give more technical information. Some really appreciated the behavioral therapy discussion; others preferred the pharmacological discussion. Some appreciated the discussion on drug interactions; some thought it went off topic. Most everyone appreciated the panel discussion at the end, although there was frustration by some who did not get their questions answered. Some wanted the panel to be adults with TS and to have less structured ‘lecture' style discussion and more discussion among small groups. I think this really speaks to the need for greater support groups and in particular, support groups for adults with TS. We have started to address this with our Seattle social group, but it seems we need more opportunities for adults to get together. When asked if the attendees felt they could apply this information to their needs, most felt more informed and better suited to ask more detailed questions at their own doctor visits with their child. Some wished they had had this information ten years ago. Some thought they could not and some were still figuring out what their needs were. There was some feedback that people felt too rushed for time, especially at lunch and they would have liked more time to sit and talk with people. Suggestions for future conferences covered a wide range including education, behavior issues and parenting skills, social skills and transition into adulthood, PANDAS, advocacy, and alternative/complementary approaches. Some overall feedback was comfort and relief of all the other people concerned with the same issues and a feeling of ‘not being alone in this' as well as learning of the wide range of support services out there and that research and understanding is continually growing.

Children's Program
Meg Howard-Petosa did an outstanding job in organizing an educational and entertaining Children's Program. For some, coming to the conference would not be possible if there was not such a program; others look forward to it just so the kids can be together, play and share stories. Meg single-handedly organized a fun-packed day for the children and from what I saw and heard, and the feedback received, the day was an outstanding success. The children had presentations from Mad Science, Darby Gerking, a professional music instructor, "Bubbles the Clown" and a rap session with George Lynn, a mental health counselor. Every one of these was very well received and age-appropriate. Other activities included an outside treasure hunt, coloring and building projects, guessing games and tours of the museum. I had my 4-year-old daughter enrolled in the program and when I went up to check on Lauren, everything seemed so calm; it was calmer than my house — and I only have 2 children! I hope the children were able to make some connections that they can pursue outside of the conference and perhaps meet up again at our summer picnic.
I would sincerely like to thank Meg for all her work on the Children's Program as well as the 14 volunteers that she had helping with the children. We know for sure that if there was not child care available there would have been no way we could have had large registration numbers. Thank you Meg!!!

Volunteers
I would like to thank the many volunteers who helped on Friday and Saturday. In addition to the complete chapter board who were involved throughout the conference planning process and on both days, I would like to thank Sheri Griffin, Nanette Rosenthal, Ellen Broyles and Wende Wahl who were all involved in this conference. If I have forgotten somebody, please forgive me, but know that your volunteer efforts are very much appreciated. Since our chapter is solely a volunteer based one, our level of services is directly dependent on our volunteers. So thank you!!!

Book Sale
We held a book sale on both days and were able to present to the medical and professional community 68 different book titles covering all the spectrum disorders of which TS is a part. There are so many books on these topics and it is difficult to find them all in the one place. Thank you to Baystate Professional Book Service for facilitating this sale. This company specializes in books in the area of mental health so if you are ever looking for a title, they are a good resource. Their website is www.baystatebooks.biz.

We did video record the conference and will be making available copies for loan through our lending library or for sale. Please check our website for more details on this or call or email me at 206-780-5361 or Bernadette@thewittyfamily.com. We will also have copies of the complete conference syllabus for Saturday available from our lending library or for sale.

Overall I think the conference was a success. There were definitely lessons learned, but by and large an effort well worth it. I would like to thank all those people who spoke with me on Saturday. Your kind words are very much appreciated.

2004 Budget

New Board Member

That's All, Folks

My tenure as newsletter editor has come to an end. Although it's time to move on to other challenges (notably both kids moving on to new schools and a major house remodel), I'm going to miss being involved with the chapter in this important way. It has been immensely rewarding to receive scads of information on TS and associated disorders, and then to collaborate with professionals in the field as well as other chapter members on various articles. It is also gratifying to know that I'm providing information and resources to people throughout our state who might not have access to it in any other way. Thanks to all of you who have taken the time over the years to write me with your encouragement or to send a contribution on behalf of the newsletter.
I've been extremely fortunate to have had great, dependable volunteers helping with the production of the newsletter over the past seven years. Thanks to Hazel Rosenthal, and more recently, Robin Harkey for their many hours of folding, stapling, labeling and assembling the newsletters for bulk mailing. Kim Gorman keeps our chapter mailing list and generates mailing labels for each issue. I appreciate the assistance Carole Jones of Carole Jones Design has provided in the last couple of years in the design and layout of the newsletter. Ken Clogston of Gateway Printing has been extremely generous over the years in printing the newsletter and various flyers and pamphlets at cost or often for free. For several years when I first started publishing the newsletter, Erin Hewitt, a high school student, regularly wrote "Ask Erin" an advice column directed specifically to kids. Jai Kelly has been a trooper, dependably keeping up on both state and federal legislative issues since 2000 and writing our Legislative Update section. As soon as Dr. Sam Zinner moved to the Seattle area in 2003, he volunteered to contribute an "Ask the Doctor" column for each issue, for which I'm very grateful. All of these people's contributions have helped make this newsletter one of the best of any of the TSA chapter newsletters in the country (if I do say so myself!).
Let's not allow this vital service to our chapter come to an end. If you are able to help contribute in any way to producing this newsletter please let us know. Contact Bernadette Witty at 206-780-5361 or bernadette@thewittyfamily.com. And remember, back issues of Connections can be found at our website www.tourette.net/wa

2004 National TSA Conference

The TSA National conference was held April 21 to 25, 2004 in Alexandria, Virginia. I had the opportunity to attend, along with board member Jaime Biava. To say this was an amazing, powerful, rewarding and very memorable event for me is an under-statement. I am writing this on the plane on the way home so I guess my emotion level is still high. For me it was the first time I had attended a National conference and to be surrounded by so many other people with Tourette Syndrome or directly affected by it, as well as hearing from medical and scientific experts who are dedicating their careers to the treatment and research had quite an impact on me personally.

Chairman's Training
On Wednesday, April 21, I attended the Chairman's training. This was an excellent opportunity to meet all the other chapter chairs and finally put some faces to people I have corresponded with via email. The chapters shared some great information involving their local activities and there was a lot of discussion on fundraising ideas. I was surprised to learn of the range and extent of fundraising that has been done and particularly how approachable the corporate world can be when asked. My take-home thought is that there are many ways our chapter could expand our fundraising activities which would then greatly expand the services we could offer. I hope we are successful in recruiting more volunteers so we can pursue some of these ideas. We also had a brainstorming session on problems and solutions that our chapters face. I guess it was no surprise that many of the problems we face, including the need for volunteers, funding, preventing "board burn-out" and achieving more active participation, is common among all the chapters. Together we came up with some creative ideas and I will hope to implement some of these over the course of the next year.

Leadership Training
Thursday morning was spent in leadership training which included a comprehensive discussion on government relations and public relations. The public relations was particularly timely and useful as I had just written a press release for our May medical conference before I left for Virginia. Of course after the training, I realized it was all wrong and re-wrote it! The presenter was Laura Scott, Account Supervisor at Ketchum, a leading public relations agency. In the short 45 minute presentation I think I got a great lesson on Public Relations 101 and was very pleased to be able to apply the new information to the public relations strategy that I was in the middle of for our own medical conference. Learning how to approach the media, how to pitch a story, interviewing tips for talking to the media and writing press releases was very timely and helpful information for me. I guess the results can be seen in that our conference was listed in the Seattle Times health calendar, and I was interviewed by a reporter from the Bainbridge Review who is writing an article on Tourette Syndrome. The other thing I learned is that public relations is all about communication and keeping good consistent contacts within the media. In trying to promote our own conference, I corresponded with Warren King who is the medical reporter for the Seattle Times (you have probably seen his articles in the health section). He could not cover our medical conference this time, but I told him that he could use me as a contact next time. We have all heard the various new stories that arise in the media from time to time about TS. Most recently it was the "Deep Brain Stimulation" surgery; others include the time a man with TS was asked to leave a Kirkland restaurant, and then there are the various TV shows and movies that depict characters with TS. All of these are an opportunity for us to accurately educate the public about Tourette Syndrome.

I really believe successful public relations are so important for our chapter and I hope to continue our momentum in this area.

Trip to the Hill
On Thursday afternoon, Jaime Biava and I participated in the "Trip to the Hill." On that day over 120 appointments with Representatives, Senators and staffers were made by TSA delegates. The intent was to advocate for specific legislation affecting the TS community. Specifically there are four major issues that the TSA is concerned with: 1) Mental health parity 2) Reauthorization of IDEA 3) Genetic discrimination and 4) Federal funding. I will not go into detail on each of these but more information on these can be found at the national TSA website or by contacting the National Government relations contact Jeremy Scott. Jaime and I met with Mark Rupp who is a legislative assistant to Senator Maria Cantwell. We discussed federal funding and mental health parity and Mark was very supportive of us. We also asked Mark to have Senator Cantwell sign on to a letter that was sent by Senator Clinton and another Senator (the name escapes me) to Senators Specter and Harkin asking for $2 million for the Tourette Syndrome Public Health Education and Research Program. I later received an email from Mark telling me that Senator Cantwell had indeed signed on to the letter.
We then met with Joshua Jacobs who is a legislative assistant to Senator Patty Murray. We talked about federal funding and mental health parity again and also about IDEA reauthorization. Joshua was just as supportive, although he told us that the budget is very tight right now, especially given what is going on overseas. We also asked Joshua to ask Senator Murray to sign on to the letter.
We were quite nervous as we entered the Senate building and tried not to think about the anthrax and ricin scare last year. However after meeting with the aides, it quickly becomes apparent that we are the ones with the information, and the personal story. Nerves are quickly abated once you start talking and realize how much of an impact you can make, if you just get out there and tell your story. After going to Capitol Hill, a trip to Olympia should be easy! Increasing our visibility in Olympia is also something I would like our chapter to pursue. So if anyone wants to meet with one of our representatives with me in Olympia, just give me a call!

General Sessions:

Medical and Behavioral Sessions
On the Friday morning I attended the first of the medical & behavioral sessions. A range of behavioral interventions were discussed by James Leckman, M.D., John Piacentini, Ph.D., and Lawrence Scahill, MSN, Ph.D. All the presenters delivered excellent talks and the presentations prompted a good question and answer period. Different approaches were discussed and it is comforting to know that for those where medication has been less than successful or for some, not an option, there are non-pharmacological approaches to coping with TS. I also learned that there is a "TSA Behavioral Sciences Consortium" that these presenters are part of, so we can look forward to continued research and findings in this vital area. We were fortunate to have John Piacentini at our own chapter medical conference to discuss habit-reversal therapy that involves awareness training combined with competing behavior. See the article on our chapter medical conference for more information.
On Friday afternoon I attended a session given by Cathy Budman, M.D. on impulse control and anger management. Dr. Budman, also on the National Medical Advisory Board, gave an insightful and comprehensive presentation. She differentiated between temper tantrums and rage, discussed the various pros and cons of medication and answered with compassion some of the difficult questions raised. Rage can be a symptom of TS and one that can be difficult and painful to talk about. Cathy did an excellent job on exploring these issues and I hope that one day we could have her come to Seattle and address the topic with our chapter members.
Saturday morning was spent in a plenary presentation on pharmacology by Budman, Jorge Juncos, M.D., and John Walkup, M.D. from the National Medical Advisory Board and Gerald Erenberg, M.D. from the National Scientific Advisory Board. After hearing lists and lists of drugs, my brain began to enter overload. I think however that the important message was monitor, monitor and monitor. The brain is a living organ so even if a drug is successful for a while, things change. I am encouraged by the work on expanding the pharmacological options available, but see there is much more to be done.
Saturday afternoon was spent with Dr. Leckman on the topic "TS Does Not Define You as a Person." There were many adults with TS present and many parents with personal stories of trying to help their children with the challenges they are facing. One person had flown to the U.S. from New Zealand; she was that desperate for information. Living your life as a person, who just happens to have TS, is such an important thing to remember, especially for those young people looking toward transition into adult life. The take home message from this was find the things you are good at and that you enjoy and also remember all the good things that accompany TS! There are some definite advantages to high levels of energy. I know this is sometimes easier said than done but you have to try.
The final session was a plenary session of a question and answer family panel. The panel consisted of three parent/child combinations and a young adult with TS who recently earned his medical degree, Evan Trost. They all talked about their personal stories, struggles and hardships along with successes and joys. They each found ways to overcome the challenges that TS has presented them and included some light-hearted humor as well. It's true, sometimes you have to laugh. I laugh at myself when I do hand-stands in the kitchen in the middle of cooking dinner!

TS Talent Revue
Saturday evening was a dinner that included eight different entertainers, all of whom have TS. Scott Anderson is a vocalist who started the evening with a fantastic performance. He goes by the name "Twitch." This was the first time I had heard him and was very impressed. I bought a copy of his self-titled CD and have been playing it ever since. I would encourage you to check it out at his website www.twitch.us to hear a sample of his music. Hannah Elliott is a vocalist with an amazing voice. I definitely think she would give American Idol contestants some very good competition. Michael Wolfe wowed the crowd with his jazz and also his spur-of-the-moment jamming with a young man in the audience that played the bass. I think jamming with Michael Wolfe is an experience that young man will not forget in a while! I was so impressed by the musical talent of all the entertainers — it made me wish I could sing a note in tune! I would love to ask one of the presenters to perform at a fundraiser for our chapter, something else on my list of goals for us.

Well I hope I have given you a good summary of the conference. It was well worth it for me and I plan to use the things I learned there to continue to grow our chapter. The next national conference will be in 2006, I expect at the same location in Virginia. I would encourage you to attend it if you can.

MEDICAL NEWS

by Samuel Zinner, M.D.

Deep Brain Stimulation and Tourette Syndrome — New Frontier?

Question: There was something on television recently about a treatment for Tourette Syndrome on brain stimulation. Does this work, and is it available to anybody with tics?

Answer: The procedure that was announced is referred to as Deep Brain Stimulation, or "D.B.S." This procedure was performed at the Children's Hospital of Cleveland this past February on a 31 year old man with very disabling tics.
D.B.S. is considered to be highly experimental, and involves the implantation of electrodes in the brain. The electrodes are attached to a device that is surgically implanted in the upper chest. This implanted device delivers electrical pulses which then travel through the electrodes to the region in the brain (basal ganglia) that is thought to be responsible for the tic symptoms of Tourette Syndrome. Tourette Syndrome, by definition, is a tic disorder, but it is very common for people with Tourette Syndrome to have other, non-tic symptoms. However, D.B.S. for this patient was performed specifically to alleviate the tics. There is no evidence or reporting that D.B.S. may be helpful for non-tic symptoms.
The D.B.S. procedure was first developed in 1993, and increasingly is applied to patients with Parkinson disease, which is another neurological involuntary movement disorder. However, the procedure is still very uncommon, even in Parkinson disease. Parkinson disease involves similar brain structures as Tourette Syndrome, but the defects are not the same. It is not understood why D.B.S. works in patients with Parkinson disease, or why it seems to have worked in this patient with Tourette Syndrome. Undoubtedly, the success is related to an impact on the movement of chemicals (neurotransmitters) between cells in the brain.

An important distinction is that the recent report describes a single case involving only one patient with Tourette Syndrome. The national Tourette Syndrome Association reports that, "While it is encouraging that at the present time the patient is experiencing a reduction in symptoms, insufficient time has elapsed since the operation to conclude that this [improvement] will persist. Moreover, it should be understood that when undergoing this procedure, there are serious risks involved that could include [brain] bleeding and infection." The procedure also has devise-related complications, which can result in temporary or permanent problems.
The national Tourette Syndrome Association warns that, "unfortunately, in the past we have witnessed a variety of therapies heralded as breakthroughs in Tourette Syndrome treatment that have proved ineffective in the long run. Only rigorous, methodologically sound scientific study of D.B.S. will provide the answers we seek."
Some of the past therapies have included surgical techniques, which are extremely rare approaches in managing tics. Furthermore, such procedures are reserved for extremely disabling or injuring tics, and only as part of experimental research-based protocols. The techniques can be quite dangerous, and are not available in general.
Currently, the national TSA Scientific Advisory Board is working to convene a panel of experts from around the world to provide a comprehensive review of D.B.S. The objective of this panel will be to advise on the safety and efficacy of D.B.S.
For the time being, D.B.S. is not available as a therapy in the treatment of Tourette Syndrome. Ongoing research efforts have provided evidence of good benefit to treatments involving behavioral approaches and some medications. As always, a thorough evaluation of tics and non-tic problems is essential. In addition, an ongoing relationship with a supportive and patient care provider, and good communication with a child's school and family, offer the best outcomes in managing Tourette Syndrome.
For an online news report on the patient who underwent D.B.S., go to: http://abcnews.go.com/sections/GMA/DrJohnson/Tourette_syndrome_040401.html

Dr. Zinner is an Assistance Professor of Pediatrics at the University of Washington School of Medicine, and a Developmental and Behavioral Pediatrician with the Center on Human Development and Disability at the University of Washington Medical Center.
 

Antidepressants and Children

The TSA Medical Advisory Board has not reviewed this material. The authors are solely responsible for its content.

LEGISLATIVE UPDATE

Health Insurance for Children

In previous issues we have requested your support for the Family Opportunity Act, (S. 622/H.R. 1811) also known as the Dylan Lee James Act. This federal legislation would allow families of severely disabled children to buy into Medicaid insurance if their employer-provided health plan does not cover the medical expenses of their children. Families whose income is 250% or less of poverty level would be eligible to buy into this program. This Act currently has 63 cosponsors in the Senate and 85 cosponsors on the House. Without this opportunity to buy into Medicaid, thousands of families are forced to relinquish custody of their children in order to get them the health services they need. A study in 2001 showed that over 12,000 families have had to relinquish custody in 18 states so their children could get the help they need. Statistics on the remaining states were not available at this time. This should never happen. Contact your Senator or Congressperson to let them you support this legislation.
Another bill which will help to address this same problem in a different manner is the Keeping Families Together Act ( S. 1704). According to the American Counseling Association the Keeping Families Together Act "...is somewhat less expensive than the Family Opportunity Act, but has fewer cosponsors. The Keeping Families Together Act, introduced by Senator Susan Collins (R-ME) and Rep. Jim Ramstad (R-MN), develops and expands systems of care for children at risk of custody relinquishment. The bill allows a competitive grant program for states. Grantees must demonstrate that children would receive appropriate, individualized mental health treatment so that parents would not have to give up custody. The bill is a lower-cost, focused solution that would hopefully pave the way for more comprehensive, nationwide action on this problem." Mental Health Parity legislation will also help to address this problem for families who are employed, but whose health insurance plans do not cover mental health services at the same level that other medical conditions are covered. The Senator Paul Wellstone Mental Health Equitable Treatment Act (S. 486/H.R. 953) has strong bipartisan support with 67 Senate cosponsors and 241 House cosponsors. President Bush has also pledged support for federal legislation to require parity for mental illness coverage. We ask that you contact your senators to urge them to support immediate action on The Senator Paul Wellstone Mental Health Equitable Treatment Act. Senators should be encouraged to contact Majority Leader Bill Frist (R-TN) and Health, Education, Labor & Pensions Committee Chairman Judd Gregg (R-NH) to urge them to bring S. 486 to the full Senate for a vote as soon as possible. For the past three years this legislation has had overwhelming support, but has not been allowed out of committee for a vote. The committee chairpersons often have the power to keep legislation from being voted upon and made into law regardless of the support they have in Congress and across the country.IDEA Reauthorization By a near unanimous vote, the Senate has approved major changes in the Individuals with Disabilities Education Act (IDEA). The changes include stronger enforcement by Federal and state authorities, limits on parent lawsuits, and reduction of school paperwork. Compared with the House version passed last year, this bill provides greater legal protection for students with disabilities. For example, the House bill allows schools to eject children for unruly behavior without having to demonstrate that the behavior was not linked to their disabilities; the Senate bill requires proof that the misconduct was unrelated to disability. Neither bill, however, calls for full funding of IDEA provisions – a pledge that Congress made when the law was first enacted 30 years ago. The next step will be reconciliation of the Senate and House bills in a conference committee, where much mischief is possible. Senator Edward M. Kennedy, a chief sponsor of the Senate bill, is seeking some "pre-conference guarantees" to ensure that key issues such as student discipline will reflect the Senate's approach.
According to the national TSA: "IDEA can be an enormous help to children with Tourette Syndrome (TS); however, the help will be more effective and will reach more children with TS if the following recommendations are implemented in the course of reauthorizing IDEA.1. We need TS listed as a disability under the IDEA, more specifically under the category of "Other Health Impaired." Children with TS very frequently receive no special educational services because of misunderstanding about the nature of their symptoms. Educators continue to erroneously see TS as a behavioral or conduct disorder which results in the inappropriate placement of these children.2. We support basing eligibility for services and accommodations on the presence of symptoms that interfere with school performance. We have long struggled to obtain services for children with TS, because frequently these children can achieve at grade-level. But a child with TS, who has interfering symptoms such as constant erasing, rewriting, and tics that cause the student to lose his/her place on the page, may be performing well below his/her potential.3. Discipline provisions in the law should be written so they do not require punishing children for the expression of TS symptoms. We acknowledge that any behavior that is harmful to others must be controlled and that students with TS are responsible for their behavior. However, tics, both vocal and motor, are very frequently misinterpreted as bad behavior or intentional classroom disturbances. Tics are not bad behavior. Tics are uncontrollable neurobiological events. Decisions by educators addressing behavioral issues need to be based on a correct understanding of how TS affects behaviors.4. In order to achieve the best academic and social results for children with TS early identification is paramount. The law should require and provide teacher training for all special and regular education teachers about TS and its accompanying neurobiological disorders."
Many states are rebelling at full enforcement of IDEA because the states currently must make up for the funding which the Federal Government fails to provide. The National Governors Association is now on Capitol Hill telling members of Congress that the enforcement provisions should be eliminated or watered down until the Federal government lives up to its promise of IDEA funding. Let your Representatives at both the state and national level know that full enforcement of IDEA is MUST.  

Money for TS Research and Education

"Congress passed the Consolidated Appropriations Act of 2004 (P.L. 108-199), which set aside $1.5 million for the Tourette Syndrome Public Health Education and Research Program within the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention. The education component of the program will provide education and intensive training for the public, physicians, allied healthcare workers, and educators about Tourette Syndrome. The research component of the program will focus on collecting scientific knowledge regarding TS. The program will seek to determine the prevalence of the disorder in the general population and the frequency of co-occurring disorders such as Attention Deficit Hyperactivity Disorder and Obsessive-Compulsive Disorder. The Tourette Syndrome Association is requesting $2 million dollars to be allocated to the National Center on Birth Defects and Developmental Disabilities at the CDC to continue the Tourette Syndrome Program. Congress knew that the $1.5 million allotted for the Tourette Syndrome Program last year was only enough money to establish the program and that it was going to take more money to complete both components of the Program."No Child Left Behind and Children with Disabilities
The No Child Left Behind (NCLB) Act allows parents whose children attend low-performing schools the opportunity to transfer to another public school of their parent's choice providing space is available. Priority is given to students who score the lowest in reading/English and mathematics and who receive free and reduced-price lunch. Please keep in mind that children who qualify for IDEA or 504 plans are eligible for these transfers also. Their disability does not disqualify them from the provisions of NCLB. It is the responsibility of all of us to ensure that Congress takes these bills seriously. Please contact your members of Congress to encourage them to support the legislation and amendments above. The Capitol Switchboard can direct you to your lawmakers if you dial 202-225-3121 or 202-224-3121.

Letters to Senators from the state of Washington can go to:

Sen. Maria Cantwell
Fax: 202-228-0514
Email: Use the web form at http://cantwell.senate.gov/contact/index.html

Sen. Patty Murray
Fax: 202-224-0238
Email: Use the web form at http://murray.senate.gov/email/index.cfm

The following organizations have excellent information on these and other issues:

DREDF IDEA Rapid Response Network (RRN) at http://www.dredf.org/rrn/ActionAlert12.html

ACA's Legislative Action Center at http://capwiz.com/counseling

Bazelon Center for Mental Health Law at http://www.bazelon.org

National Alliance for the Mentally Ill at http://www.nami.org

SCHOOL NEWS

Restriction of Attorney Fees for Parents

HEATH Initiative on Intellectual Disabilities (2004)

Listserv for Special Education Parents in Seattle

Summer School to Build Skills

Moving from High School to College

Post-ITT is a free web-based resource designed to help students with disabilities make the transition from high school to college. It has comprehensive information about disability support services and activities designed to guide you through this process. Visit Post-ITT on the web at http://www.postitt.org. For info call 206-285-9317 or postitt@wri-edu.org. With so many resources now available on the Internet, there are lots of ways they can be used to help high school students prepare for college. Take a look at a new DO-IT publication at http://www.washington.edu/doit/Brochures/Academics/cprep.html that guides students through topics that will help prepare them for college. Some of the resources included are good for parents to take a look at too. This publication was originally published in the Closing the Gap periodical.

ADULT ISSUES

Disinhibited Thoughts #25 - Turning Lemons into Lemonade

by B. Duncan McKinlay, Ph.D.

Here's an odd little notion that occurred to me one day — "by God, this disorder BETTER be life-long, or I'm going to be mighty annoyed!" (??!) I think that requires some explanation…

A person is born with certain differences. Because the world expects certain things of certain people at certain stages of development which may not ‘jive' well with these differences, in various ways this person is disadvantaged. She eventually learns to rise above the disadvantage — not by actually smiting the differences mind you, but by enlisting them instead. In this way, her chosen self-definition then begins to rely on those very differences — what once plagued her is transformed into the source of her success. I once heard it said that "no one's ever gotten anywhere by building on their weaknesses." While I would agree, I suppose I would want to temper this thought with an addendum: don't knee-jerk into assuming that a difference is automatically a weakness either.
This notion is hardly original. Dr. Temple Grandin, famed and accomplished animal scientist who also just happens to have autism, stresses this point herself. She advises adults to find each autistic child's individual strength and cultivate it into an occupation. That strength you find and the child's difference may just be one and the same. Dr. Grandin herself is a case in point — it was the very sensory sensitivities borne of her diagnosis that fostered her many brilliant insights into reducing stress and suffering in livestock around the world. Sun Tzu's Art of War tells us, "Keep your friends close, and your enemies even closer": this applies just as well in the brain as it did on Sun Tzu's battlefield. Even Spiderman describes his superpowers as "my blessing…my curse."
In my case, akin to the starving artist notion, the angst that my differences provoked has been a valuable commodity. The unrest I felt over my impulsivity in action and emotion, my inflexibility at times, and my unusual movements and noises fostered insights within my chosen field, and in the end opened rather than closed doors for me. It caused me to become preoccupied with things I'd have rather not thought about; the passion in my writings and presentations is borne of that mental wrestling. And so whether I lose my differences, or simply come to comfortable terms with them, the end-result would be the same. I've lost something valuable. Who are you, after ‘who you are' is gone? What would happen to a "Disinhibited Thoughts" column if the thoughts suddenly found inhibition? How would you explain battle-scars, hard-won in a battle of differences, when those very differences desert you with no overt trace of why or how you've become the person you are? You'd be expected to pass for normal then — close Pandora's Box and pretend it all never happened. That sounds so invalidating to me — I would want to yell, "HEY! I STRUGGLED! We might look the same now, but we started from very different places — don't judge me!"
Do I want to become adept at running a lemonade stand, only to have my supply of lemons cut off just as I find myself amid ambitious plans to expand the franchise? No thanks. As Captain James T. Kirk once said, "I don't want my pain taken away, I need my pain!" Keep those lemons coming, please.

Until next time, my friends!

Visit "Life's A Twitch!" at http://www.lifesatwitch.com

Copyright January 2004, B. Duncan McKinlay, Ph.D., C.Psych. Printed with permission.
 

Adults with ADD

NEWS YOU CAN USE

The S.T.A.R.T. (Success Through Awareness and Responsibility Training) program is a 14 week skill-building program using multi-modal direct instruction techniques for adolescents. The course teaches skills to manage anger and/or stress, self-identity, decision-making, problem-solving, effective communications and identifying personal strengths. Contact Milele Landrum at the Learning Disabilities Association of WA, 425-882-0820, ext. 7 or www.ldawa.org for dates and times.
 

Itchy Tags?

Help for the Absent Minded

Summer Camps

Tax Benefits for Parents of Children with Learning Disabilities

The TSA, Inc. 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.

OTHER RESOURCES

CHADD Support Groups

Association for Comprehensive NeuroTherapy

PAVE

WTC Clearinghouse

Asperger's Support Groups & Newsletter

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