CONNECTIONS

Medical Conference Update

Agenda:

Presidents' Corner

Hello again everyone! I hope you had a wonderful Christmas and New Year and that this finds you healthy and ready to launch into 2004! Well, it's already March so I hope 2004 is off to a good start!
Our board is very excited as we look forward to the much anticipated medical conference May 14 & 15, and so the next few months will be very busy for us as we prepare. Through our information line as well as general calls for help, we hear a number of different stories and challenges families are facing. We hope that the medical conference will help provide more information, offer the opportunity to ask your own personal questions and promote networking among medical professionals and families alike. It is a tremendous amount of work to prepare and run a conference, so we are hoping our chapter members will respond with a large attendance. Refer to the Medical Conference update on page 1 for more information. Also we are co-sponsoring with Children's Hospital on the Friday conference and part of our agreement is that we will provide six volunteers for the day. So far I have had one person come forward. Thank you to Martha Hankins for offering your services and I look forward to hearing from more people.
We are also excited about having our own official School Advocate for our chapter. For many years this was done by the past president and very experienced Fon Schrup. As well as being a mother of a child with TS, Fon has over 20 years experience with PAVE and has been of personal help to many, many families throughout Washington. We are eternally grateful to Fon for all the help she has provided and continues to provide to TS families. Our board member Cori Hartje completed the National Advocacy training last October and is now a certified advocate. Cori also has personal experience as she is a parent of a child with TS and so through her combined personal experience, her background in professional education and National's training, she will be well equipped to help you address problems you may be encountering in the school system. Don't hesitate to call for help.
The devastating news I have to report is that this may be our second to last newsletter. As you will read from the flyer included with this newsletter, our newsletter editor, Nanette Rosenthal, will be retiring. Her last newsletter will be the June 2004 issue and unless we have a new editor in place by May 1st 2004, we will no longer be able to produce newsletters after June 2004. This is distressing as the newsletter is probably the best way we have to offer relevant and crucial information to our members. Over the seven years since we have been producing this newsletter, we have received many, many letters of positive feedback. Families had told us how helpful and insightful the content has been and so it will be a tremendous loss if we have to discontinue this service. On behalf of the board, we are pleading with our list of 950 people who receive this newsletter for someone to come forward and assume responsibility as editor. Nanette has a wealth of experience and resources as well as patience, so this will help the transition to be a very smooth one.
I will be attending the National TSA conference in April, the first time for me. I have missed the past two conferences due to either being pregnant or post-natal with a newborn. OK, probably too much information! I am looking forward to sharing what we have been doing as a chapter as well as learning successful strategies from the other chapters. If there is anything in particular you would like me to share with National, I would be happy to do so on your behalf. Just send me an email or give me a call.
I look forward to seeing you at the May medical conference!
Happy spring!

Bernadette

206-780-5361, Bernadette@thewittyfamily.com

CHAPTER NEWS

IDEAS Conference

Our chapter was represented at the state Inter-Disciplinary Educational Alternative Strategies conference (IDEAS) in Spokane on January 29 and 30. The conference is typically attended by school teachers, health professionals and administrators dealing with special ed. students across the state. We had an informational table to support educators that wanted more information about Tourette Syndrome and how to work with students in the classroom. Dozens of attendees stopped by to have in-depth conversations. Robin Doloughan and Mary Ingram from Spokane, and Cori Hartje, chapter board member from Seattle, supported the informational booth. Cori presented a break-out session to 52 educators on Understanding Tourette Syndrome & Associated Disorders: Specific Classroom Strategies. The session focused on the understanding of how TS manifests in the classroom, and discussion on behavior issues, resources, and on common experiences. Associated disorders that are often involved such as ADHD, Obsessive Compulsive Disorder, or the disability of dis-inhibition were discussed. Attendees left with IEP helps, accommodation strategies, and other handouts.

The Use of Containment Rooms in Our Schools

Background
The children of Carol Skinner and Mike Freeman were placed in a special education wing of their local high school in the Olympia School District. Carol's daughter (who has Cerebral Palsy and stereotypical movements similar to tics) was placed in 2001; Mike's daughter (who has Down Syndrome) in 2002. Within the special education classroom (the IEP placement) was an adjacent space - a partially converted storage closet in which their children were educated for parts of the school day and where Carol's daughter ate her lunch every day. The small room was not part of the approved placement described in the students' IEPs and it did not meet the safeguards of a disciplinary isolation room as described in WAC (Washington Administrative Code) 392-172-394 (2). The room was roughly 4 feet by 10 feet with floor to ceiling open storage shelves on three walls. Three to four oxygen cylinders were stored there. The door (with no observation window) opened inwards swinging through the only open floor space in the storage closet. If a student were to fall on the floor due to illness or during a seizure, the fire department would have had to cut the door apart with a chainsaw to rescue the student.
Both parents tried to educate the district on the safety issues and on the unreasonable placement aspects of the storage room. That failed, so the parents resorted to both mediations and due process hearings. Because the purpose of the small room's use was not disciplinary, but was considered educational or therapeutic by the school, the protections of the WAC having to do with disciplinary isolation rooms were not available to the families at the hearings. In addition, the district's staff did not honor agreements formed in mediation about not using the room for Carol's daughter but continued to keep her in the room unbeknownst to Carol (her daughter is not able to speak, so could not communicate this to her). Eventually, Carol was forced to obtain a transfer of her daughter to another high school in the district. Mike obtained a placement alteration removing his daughter from the special education wing (and the storage closet) and from the educational case management of the special education wing staff. The local fire department and health department finally "recommended" that the district remove the door from the storage closet if it was to be used as instructional space (reportedly, the door has been taken off the hinges but Carol and Mike are prohibited from accessing that portion of the school to verify this). Interestingly, although largely unused, Carol's daughter's new school has a stand-alone isolation "box" located in a storage corner of a restroom. These types of rooms are not unique to that one particular school, or even that district, but are present in many schools across our state.

Need for Legislation
Both students experienced non-disciplinary uses of isolation and restraint in special education. The parents discovered that educational or therapeutic uses of isolation and/or restraint are not bound by the protections found in state administrative law that exist for disciplinary or averse intervention uses (i.e., WAC 392-172-388 thru 396). The WAC defines aversive intervention by saying that isolation, restraint, etc. must be something "…which the student is known to find painful or unpleasant for the purpose of discouraging undesirable behavior…." With students like Carol and Mike's who are not fully capable of self expression, and who are not behavior problems, the protections in WAC are easy to avoid.
Despite the parents' repeated approaches to the school board, the district refused to address the specific policy concerns and the district remains committed to using the loophole in the WAC to employ aversive intervention techniques apart from the uses prescribed in WAC. Through the parents' contacts with a woman named Debbie Sorrels, they found that these and related problems were not just local but statewide (and spreading even on a national basis). They determined that the large gap in WAC impacting their children and the smaller gaps in the WAC that impact students being disciplined needed to be corrected in state statute (rather than just in WAC or in local school district policy). The Washington Administrative Code is administrative law, the lowest level of law. The WAC is enforceable through agency hearings such as with the Office of the Superintendent of Public Instruction, and seldom forms a sufficient base for litigation in Superior Court. On the other hand, the Revised Code of Washington (RCW) is statutory law. It is passed by the state legislature and is enforceable in Superior Court.
This group of three people had some useful skills among them. Carol is a registered nurse. Mike has a background as a regulations writer and is currently working as an unpaid citizen lobbyist. Debbie has 28 years of experience as a foster parent including 8 years specializing in at-risk youth, and is currently contracted with DSHS/DDD as a family support worker/community guide. Together, they decided it was time to bring this problem to the state level and try to address it by means of changing the law.

Drafting a Bill
Initially, Carol made independent contacts to her legislators in the 22nd Legislative District. Late in 2003, Carol invited Mike and Debbie to come alongside to help in the complex process of seeking statutory changes. After two meetings with one legislator, a committee staff person came into play to draft a legislative bill. The bill that came forward was HB 2885, introduced January 21st. However, due to some misunderstandings, the draft did not successfully address most of the group's issues. The bill received sign-on support from seven house members (bipartisan support). The bill is not likely to receive a public hearing and by the time of the publication of this newsletter should be dead. As drafted, the bill would elevate some of the requirements of WAC 392-172-394 (2) to RCW. This would strengthen the requirements and make it easier to enforce the provisions — but only for disciplinary uses of isolation. Although the last two thirds of the bill are excellent examples of the protections and notification the parents were seeking, they have withdrawn support for the bill as it is since it does not address the issue of non-disciplinary uses of isolation. They will be taking the best parts of the bill as examples and drafting a stronger and more comprehensive bill for introduction into the next legislative session. They hope to build their base of community support over the next nine months and begin the process of sponsorship again in December.

How Can Our Chapter Members Help?
Mike, Carol and Debbie need to receive letters with the stories of students who have had problems with schools in the area of aversive interventions, either because of disciplinary situations and/or in non-disciplinary situations. The letters need to be identified by legislative district but can and should be anonymous as to student name (to protect confidentiality). If letters that do identify students or families are received by them, they will take the necessary steps to remove identifying information prior to sharing these letters with legislators.
They are also seeking letters from families with students who are disabled who are concerned about this issue (even if they don't have a personal experience with it) and the growing national issues around aversive interventions. Even if it is not happening to a family today, the risks are growing. They could use as much support as possible from the 40th District (the Skagit County area) since Representative Dave Quall of that district is chair of the House Education Committee.
They are also interested in letters from professionals who have knowledge of or concerns about the practices of using aversive intervention both for disciplinary and non-disciplinary reasons.
The letters they receive will be bundled by district and presented as they seek legislative sponsorship for a bill. There is no way to predict what legislators will come forward as the champions for this bill, so at this stage they need to receive letters from as many regions of the state as possible. If they get every legislator to sign onto the bill that they draft, then that assures an easy passage of the bill.
Letters may be sent to Mike Freeman at 2323 Woodfield Loop SE, Olympia, WA 98501.

Special thanks to Mike Freeman for the information used to write this article.

NEWS FROM NATIONAL

Serial Novel Available on TSA's WebsiteSerial Novel Available on TSA's Website

TSA 2003-2004 Research Awards

• Immune factors and their impact on brain function
• The possible role of streptococcal infections in TS
• Basal ganglia anatomy
• The neurophysiology of tics
• Behavioral therapies and tic control
• Animal models of tic disorders
• Genetic studies in TS families and isolated populations
• Functional Magnetic Resonance Imaging of motor control
• Omega-3 fatty acids and tics

SCHOOL NEWS

Physicians' Diagnoses Don't Mean Automatic Section 504 Eligibility

Words Educators Use

Lawsuit Involving TS Student

Appropriateness of IEPs

Reprinted from Special Education Law Monthly November 14, 2003

Life Program Provides Postsecondary Education for Disabled Young Adults

The Art of Letter Writing

MEDICAL NEWS

by Samuel H. Zinner, M.D.

Question:
Please explain or enlighten me and others as to how, if at all, hypnosis can be helpful for the suppression or control of tics. I have never been hypnotized but have seen others hypnotized. I have seen people act, do and say incredible things while in the state of hypnosis, so I cannot help but wonder if hypnosis can help with TS. My feeling is that the tics must come out in some way, even if treated with hypnosis, but I am very interested to read your comments in this regard.

Answer:
Hypnosis has been suggested, and rejected, as a treatment approach for tics since the time of the original description of "Tourette Syndrome" in 1885. Dr. Jean-Martin Charcot was the chief physician of the Salpetriere Hospital in Paris. It is he who had urged Dr. Tourette to publish an article describing his patients with tics. Dr. Charcot asserted that hypnosis would be of no help for the treatment of inherited tics. However, he did feel that hypnosis would work for "hysterical" tics (meaning tics that were caused by a neurotic mind).
However, there is arguably an important role for hypnosis in the treatment of Tourette Syndrome. Hypnosis has been shown to be effective in reducing phobias and other anxiety-based disorders. Anxiety is a significant associated condition for many people affected by TS. Remember, too, that when addressing treatments for TS, it is important to consider the "big picture." A majority of people with Tourette Syndrome have associated, or "comorbid" conditions, and more often than not it is these conditions that present the main challenges to the individual. Therefore, the most successful treatment strategies often target the comorbid conditions. These conditions may include attention deficit disorders, anxiety disorders, depression, anger regulation difficulties, sleep disturbances, and other behavioral problems. A variety of behavioral treatments are available for each of these related problems, and hypnosis may be useful in treating any of these conditions. Research studies, however, are limited.
One of the great difficulties in studying alternative healthcare approaches for the treatment of Tourette Syndrome is funding; research is very expensive, and there is very little financial support available to pay for the research. Medication-based research is often supported by pharmaceutical companies that hope to find some benefit to their medication. Fortunately, there is growing interest in funding research in holistic approaches to healthcare. Research is currently underway studying some unregulated agents. Also, the National Institutes of Health is interested in funding studies of promising alternative treatment (and preventive) approaches to healthcare.
The first studies examining hypnosis as a tool to treat Tourette Syndrome appear in the medical literature in the early 1960s. Most studies (and studies are very few in number) are limited to case studies, rather than to randomized controlled trials that use larger numbers of patients. However, there have been no recently published studies examining hypnotherapy in TS. The most recently published study is now 15 years old. The majority of studies have examined adults with TS, rather than children. Results have been mixed, with some studies showing strong support for the use of self-hypnosis, or relaxation-imagery, as a useful tool to treat tics.
Various components that have been included as part of "hypnotherapy" (the use of hypnosis as a form of therapy) are progressive relaxation, biological feedback (such as regulation of fingertip temperature), a practiced eye-roll procedure, and visual imagery. In addition, there have been case reports documenting the success of electroencephalography (EEG) biofeedback training. (Editor's note: see the article on the use of neurotherapy and biofeedback in the June 2000 issue of Connections, www.tourette.net/wa.) Relaxation training has also been considered as a behavioral treatment for tics. This therapy is broadly defined, and is described in a 1997 publication by Ann Bergin et al. as including "progressive muscle relaxation, deep breathing, visual imagery, autogenic training (i.e., repetition of statements suggesting a relaxed state), and producing postures and activities characteristic of a relaxed person." Relaxation training is often used as an induction component for hypnosis, or may also be considered to be a form of hypnosis. While this study did not find that relaxation training was effective in reducing tics, there are many who argue that, since tics are often made worse by anxiety, measures that reduce anxiety should help to alleviate tics. Again, there have been very few studies exploring this possibility.
An alternative non-medication based approach for the treatment of tics that shows significant promise is "Habit Reversal." This approach includes awareness training (becoming aware of tics before they're happening and as they are happening), relaxation training, and either developing a competing response (which is a movement other than the tic that interferes with the ability to make the tic; for example, for a neck-extension tic, the patient learns instead to flex the neck at the same time that he or she is extending the neck, so that the end result appears to the outside observer as no tic at all), or learning to modify or slow down the tic behavior. A more complete description of how to use habit reversal is available online at www.dbpeds.org/handouts. However, I would recommend that anyone considering the use of habit reversal contact a behavioral therapist skilled in using habit reversal. The process is quite variable and needs to be tailored specifically to each patient. (Editor's note: Habit Reversal will be discussed at our Medical Conference. See article above.)
The Association for Comprehensive NeuroTherapy is a nonprofit agency whose stated mission is "dedicated to exploring advanced and complementary non-toxic treatments for" Tourette Syndrome and related disorders. This organization publishes a newsletter, Latitudes, that presents concepts and testimonies in complementary treatments for TS. I cannot vouch for or promote the scientific validity of information presented in Latitudes, and I will add that the publication is neither endorsed nor rejected by the Tourette Syndrome Association. Further information is available online at www.Latitudes.org, or by calling 561-798-0472. As with all healthcare approaches (allopathic/"western" and non-western/non-traditional), it is wise to use caution in selecting any intervention. It is also vital that all healthcare providers be made aware of any interventions that you select and that are recommended or provided by another provider.
For further reference, I would recommend the following sites for information regarding scientifically sound holistic approaches to healthcare. These include the National Center for Complementary and Alternative Medicine at http://nccam.nih.gov/, or the Longwood Herbal Task Force (LHTF) at www.mcp.edu/herbal. There are also several useful links from the LHTF that you may find useful.

Dr. Zinner is an Assistant 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. He will be a presenter at our upcoming medical conference, held in conjunction with Children's Hospital and Regional Medical Center, in May.

ADHD Drugs' Long-term Effects Examined

Link Between SSRI's and Depression

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.

LEGISLATIVE UPDATE

IDEA

Medicare Patient Access to Drugs for Rare Diseases (H.R. 2700)

Public Law 106-130

Senator Paul Wellstone Mental Health Equitable Treatment Act

The Supreme Court

ADULT ISSUES

Medicated OCD is Considered a Disability in the Workplace

Reprinted from Federal Human Resources Week, November 24, 2003

Disinhibited Thoughts — Advance Warning

by B. Duncan McKinlay, Ph.D., C.Psych.

So what about warning people in advance about a person's difference? Is this the polite and proper route to take — something that Miss Manners would applaud? Or is it a violation — yet another public exhibition of what, if all things in life were fair, would be your most private inner self? Arguments can be made for both sides, and so this is what I will endeavor to present over the next two installments. My personal preference is the correct one only in that it is the right answer for ME at this point and place in my life. Only after having considered both camps will each of you be in the best possible position to find your OWN right answers, my friends.
I suppose the first question is whether or not your difference is a latent (hidden) or manifest (in your face) difference. Perhaps a difference that MAKES no difference IS no difference, at least as far as social situations go? But what about those unavoidably noticeable differences? These may be worth further reflection………..
First, from the perspective of a friend, family member, partner, teacher, or work colleague. On the one hand, warning other people in advance of meeting that person you know with a difference is minimizing to him or her. People are not defined by their difference, yet these actions set this tone. I mean, you don't "warn" people that the friend you are about to meet is black, or gay, or in a wheelchair. Or do you? And is it really even your position to DO the warning? This is not your disorder or issue, and doing the legwork to accommodate another's difference sets a dangerous precedent. Many a family has fallen hostage to one member's compulsions or rages, for example, as they continually walk on eggshells to oblige neurological whims and avoid rocking any boats. Allowing the person to experience the "real-world consequences" of either telling or not enables him or her to make certain choices, act upon them, and grow in his or her independence.
On the other hand, when I learned years ago that my parents had not told their staff (some of whom had worked for my father for years) that I had TS, this caught me very much off-guard. After so much time I had made the assumption that it would have come up at some point. Fair or not, my knee-jerk reaction was to feel that my parents were embarrassed of me to have gone so far out of their way to not say a thing. My open ticcing caught some members of my father's staff very much off-guard. Given those awkward moments, perhaps the true consideration of giving a "warning" lies in sparing unsuspecting others from the embarrassment of their uninformed reactions.

Copyright B. Duncan McKinlay, April 2003. Printed with permission.

Federal Program Offers Self-Sufficiency for Washingtonians with Disabilities

• A quick resumption of Social Security benefits if they lose jobs due to their disabilities
• Continuing medical reviews are waived while they are making timely progress towards work plan goals
• Selection of employment service providers who will design work plans and assist them obtain jobs

UPCOMING CONFERENCES

OTHER RESOURCES

Association for Comprehensive NeuroTherapy
The Association for Comprehensive NeuroTherapy exists to give information on alternative or nondrug treatments for the spectrum disorders of TS, ADHD, OCD and autism. They publish a 24 page magazine Latitudes, which is full of useful information from physicians and educators, as well as research reviews. The national TSA has a medical liaison to the organization, and lists the association on the TSA website. Their website is www.latitudes.org.

PAVE
Parents Are Vital in Education. This is our state's parent information center. It exists for parents of children with disabilities to help them understand the state and federal laws that protect our children. They are an excellent resource for questions having to do with special education in the schools. They have six offices throughout the state. Contact them at 1-(800) 5-PARENT, wapave9@washingtonpave.com or www.washingtonpave.org for more information.

WTC Clearinghouse
The WTC (Workshops, Training and Conferences) Clearinghouse was started in November, 2001. Its purpose is to acquire and distribute information about workshops, conferences and trainings available throughout our state as well as the rest of the US. These activities will be of interest to parents, administrators and educators involved with special education services for children. To access the Clearinghouse, you can go to www.searchwtc.com.

Asperger's Support Groups & Newsletter
A support group for parents, caregivers, educators, healthcare professionals and friends of Asperger/HFA/PDD children and young adults meets the second Wednesday of the month from 6:30-8:30pm at the Seattle Children's Home, 2142 10th Ave. W., Seattle. Free childcare is available. Contact Karen Roe 206-782-2232, fismama@qwest.net for more information. To sign up for a monthly email newsletter full of information useful to people along the full range of the autism spectrum (including ADHD), send an email to seattleasnews-subscribe@yahoogroups.com.

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