| Volume VI, Issue 4 | December, 1999 |
First Phase of Educational Awareness Project Completed
Thanks to the grant received from the Schiff Foundations, we were able to mail out informational materials and a video to 30 school districts in our state to help increase their awareness of TS and its associated disorders. The materials were sent in October, and in November, follow-up phone calls were made to the special education directors of each district to confirm that the materials had been received and to assess how they might be used. The board will review the response we get from the school districts and determine if and how we proceed with choosing the second group of districts to receive awareness materials. This is a costly project, and can only be completed by raising money through grants, direct donations or fund raising activities. We appreciate the help of Seattle support group members Carole Jones, Robin Harkey and Judy Swain in compiling the materials and making phone calls. Here is a list of the districts who received materials in October:
Bremerton #100 Medical Lake #326 Bridgeport #075 Moses Lake #161 Stevenson-Carson #303 South Kitsap #402 Lake Chelan #129 Pullman #267 Onion Creek #30 Quincy #144 Highline #203 Ritzville #160 Davenport #207 Central Kitsap #401 Deer Park #414 Spokane #81 Eastmont #206 East Valley #361 Rearden-Edwall #9 Great Northern #312 Ellensburg #401 Orchard Prairie #123 Peninsula #401 West Valley #208 Yakima #7 Vancouver #37 Lind #158 Wenatchee #246 Wahluke #73 Grand Coulee Dam #301J
Now You Can Support Our Chapter On-Line!
Finished your holiday shopping? We are in the process of partnering with the not-for-profit support organization GreaterGood.com so you can simplify your shopping life, and support your TSA chapter at the same time!
Simply log on to our website at www.tourette.net/wa and click on the GreaterGood.com logo, or visit their site directly at www.greatergood.com and choose TSA-WA State Chapter as the not-for-profit organization you are supporting. Then, shop at over 60 on-line stores, including Amazon.com, 1800Flowers, eToys, Land’s End, Office Max, and Sharper Image. You pay the same price as if you shopped directly at these on-line stores, but five percent or more of every purchase you make will be sent to our chapter. It’s that easy!
Check our website for updates on the partnering arrangement. Once the process is complete, all of your on-line shopping can benefit your TSA chapter. Let your family and friends know that they can support our chapter while shopping, too. Questions? E-mail yount@drizzle.com
Annual Conference 2000
Our board is in the process of planning a major educational conference combined with a chapter annual meeting and elections for Fall, 2000. We could use your ideas and help in making this event a reality. If you could assist in locating speakers, finding a meeting spot, applying for continuing education credits for school personnel or planning part of the children’s program which will run concurrently, contact the editor. We need volunteers to make this event possible! Keep tuned to this spot in future issues of the newsletter for more information.Chapter Brochure
Our new informational guide on TS and associated disorders is hot off the press and it looks great! This is a wonderful vehicle for us to get the word out about TS and also give information about our state chapter so that people know whom to contact for further resources or assistance. Thank you to Joyleen Koe and Dr. Samuel Shiu for distributing the brochures to the Seattle School District and physicians in Issaquah. Please contact the editor if you are able to distribute to schools, physicians, libraries or churches in your area.In-Service Presentations
Raising awareness of TS is something that can be done any place and any time. While the board is currently targeting police departments and schools with the limited number of volunteers we have, anybody can make a short presentation about TS to a group which would benefit from increased awareness. Jan Frye recently gave a presentation to a music education class at Pacific Lutheran University. The music teacher had liked what Jan said in a presentation last year so much, that she asked her to come back again this year! Jan spoke for about an hour, and the format was very straightforward. It went as follows:Is There Anyone Else Out There Like Me?
TS is still rare enough that many kids with TS can go for years without meeting someone else their age who has it. It can be very isolating to think you’re the only one out there who has to deal with the same issues. Our chapter has tried to provide occasions for people with TS to get to know one another – conferences, the bowl-a-thon, picnics and support groups. We realize that many of you live too far away to attend these events and would like another way to hook up with a potential friend. Jim C. lives in Montana and doesn’t know anybody else with TS. He would love to find a pen pal to correspond with. He’s an 18 year old senior who likes playing basketball, singing and playing games on the computer. He loves to swim and is into pro wrestling. He works at a grocery store, and his favorite subjects in school are algebra, philharmonic choir and ceramics. He would be happy to correspond with either a boy or a girl. If you’re interested in striking up an e-mail friendship, drop him a line at jecbrudicas@hotmail.com.E-Mail Addresses
In an attempt to keep our mailing list up-to-date, we’re asking those chapter members who have e-mail addresses to let us know what they are. Although this newsletter is our main vehicle for reaching people, occasionally we have notices of upcoming events or alerts of urgent legislative action about to take place which will affect TS families but which don’t make the newsletter deadlines. This is another way of communicating with you which is less labor intensive for us than a phone call and hopefully less intrusive to you as well. Our chapter policy regarding our mailing list is that we keep all information you give us strictly confidential. We only release a phone number or an address with your permission, and we never hand over the entire list to another organization unless it is for an event we are co-sponsoring. If you send us your e-mail address, we promise you will not be inundated with junk e-mail! E-mail TSAWASH@aol.com today and give us your address.Support Groups
The following support group leaders have agreed to accept telephone calls concerning Tourette Syndrome. Although all phone volunteers are well versed in TS, their comments reflect their personal background with TS and do not necessarily reflect the views of the chapter.Webmaster's note - for the list of support groups please see the TSA of Washington home page
NEWS YOU CAN USE
Information on OCDSolvay Pharmaceuticals has an information line to learn more about Obsessive Compulsive Disorder. It includes a listing of physicians in your area who are qualified to treat people with OCD. Call 1-800-NEWS4OCD for your free packet of information. You can also visit their web site for information at www.ocdresource.com.
Service Dogs
Did you know that people with TS are eligible to have a certified service dog? Two of our chapter members didn’t either until a therapist suggested that a companion animal of some kind might be just the thing to help their son with his daytime anxieties and nighttime terrors (along with the parents’ consequently sleepless nights). Serendipity and a lot of research led them to Dana & Larry Babb at Paws-abilities Dog Training in Tukwila. This husband and wife team has been helping people of all ages and with all kinds of disabilities to train service dogs for many years. They are passionate about training both the dogs and their owners to become an effective team. You provide the dog and the willingness to work, and they provide the training.The process requires a lot of patience and commitment of time both at the training center and at home, but the outcome was definitely worth it for our chapter members. Their son slept by himself without terrors (and without waking them up eight times a night) for the first time in his ten years once he had his service dog Midnight, and could tolerate being in a room by himself without “freaking out.” His relationship with Midnight is not perfect by any stretch, but it has given his parents some respite and their son a four-legged 24 hours a day seven days a week support “person!”
For more information, contact:
Training: Larry or Dana Babb
Paws-Abilities Dog Obedience
(206)277-3794 (Tukwila)
Finding a dog (if you don’t already have one):
Seattle Purebred Rescue
(206)654-1117 - This is a general
number; they can give further
contact numbers for specific breeds.
Misc. questions: E-mail chateaJ@hotmail.com
The TSA and the Washington State Chapter do not endorse products, services or manufacturers. Such names appear only as information for our members. TSA assumes no liability whatsoever for information about or the use of any product or service mentioned.
Opportunities from the LDA
When you think of a learning disability, what do you think of? Dyslexia? Anything else? A learning disability is a neurological condition that interferes with a person’s ability to store, process or produce information. Individuals with LD are generally of average or above average intelligence, but the disability creates a gap between ability and performance. How many of you with TS out there are familiar with that gap? It’s quite common for people with TS to also have a learning disability, many times undiagnosed.Here is just a short list of examples where learning disabilities may be present: person may have problems with syntax or grammar; may have problems with sentence structure, writing mechanics and organization; may have difficulty with time, sequencing and problem solving; may be able to explain things orally, but not in writing; may have difficulty in differentiating sounds that occur simultaneously; may have difficulty following directions, especially multiple directions; may perform similar tasks differently from day to day; may have difficulty following a schedule or being on time; may experience stress on extended mental effort.
The Learning Disabilities Association (LDA) of Washington promotes and provides services and support to improve the quality of life for individuals and families affected by learning and attentional disabilities. There are three programs they sponsor which may be of particular interest to people with TS. You do not necessarily have to have a learning disability to attend these programs.
CHOICES Adult Program
This program maximizes the learning potential of individuals. The typical participant may be impulsive, make poor decisions that get him/her into trouble, have difficulties with family and/or coworkers, and have struggles at home and/or work. The curriculum helps participants learn:S.T.A.R.T. Adolescent Program
This program is very similar to the CHOICES program but is geared to adolescents between the ages of 12 and 19. The training is also given in 14 weekly sessions. The cost is the same as for the CHOICES program, however, full or partial scholarships are available. It is available in the King County area. Contact Mindi Blanchard at the number above.L.E.A.D. Program
The L.E.A.D. program provides a unique approach in teaching individuals the skills necessary to seek, obtain and maintain employment. It is again very similar to the CHOICES program. Besides teaching the social skills of the CHOICES program, however, there is an emphasis on skills needed in the workplace. The curriculum helps participants learn:Health Insurance Information
In April of this year, our state legislature passed the Children’s Health Insurance Program (CHIP) expanding health coverage for children in the state. CHIP is a program operated by the state in partnership with the federal government under Title XXI of the Social Security Act. It will be administered by the Medical Assistance Administration (MAA). It will serve children under age 19 whose families’ income fall between 200-250% of the federal poverty level ($2,784-$3,480 per month for a family of four). Children who are covered under CHIP will receive most of their medical services from a managed care plan. There is coverage for inpatient, outpatient, dental, home care, medications, and long-term care. Mental health and chemical dependency services will also be provided. Families will share in the costs through a premium, co-pay or combination. The services offered are the same as coverage through Medicaid, which is provided at no cost to the family. Medicaid requires that the family income level be at or below 200% of the federal poverty level, however. The MAA’s plan to implement this program has been submitted for approval. If approved, the program will start serving children in early 2000. Contact the MAA through the Washington State Department of Social & Health Services for more information. Their web site is http://maa.dshs.wa.gov/chip/index.html.Social Security
The Social Security Administration announced a 2.4% cost-of-living increase in Social Security benefits under Titles II and XVI of the Social Security Act starting in January 2000. Individuals receiving Supplementary Security Income (SSI) will receive a maximum of $512 a month. Couples will receive a maximum of $769.Work Incentives Legislation
Both the House and the Senate have given overwhelming approval to the Work Incentives Improvement Act, a bill designed to let disabled people keep their government health benefits when they go to work. Under existing law, increased earnings disqualifies people from continued Medicaid eligibility. Because of this, many people decide to stay in lower paying jobs rather than lose the health care coverage Medicaid provides. Under the new act, people with disabilities could earn up to 250% of the poverty level without losing Medicaid benefits. Disabled people who receive Social Security Disability Insurance and who return to work would be given Medicare coverage for up to 10 years as opposed to the current limit of four years. Disabled people who return to work would also be allowed to buy into the Medicaid program. This bill is currently in committee where disagreements over how it will be financed are still to be ironed out.Job Protections for Parents of Children with Disabilities
by Deborah LeuchoviusEleven years ago, my son was born with spina bifida and a related brainstem syndrome. My employer, a small non-profit agency, allowed me to return to work part-time; my husband’s income made this a realistic option. I could not have managed all my son’s therapy sessions, doctors’ appointments and unexpected medical crises without the flexibility this arrangement provided.
The stories I’ve heard since then have made me realize how lucky I was. Other parents of children with disabilities have told me of being passed up for promotions – even fired; they’ve shared tales of inflexible attendance policies that put them in the terrible position of having to choose between their jobs and their children’s medical needs. Fortunately, job protections are no longer just a matter of luck. Federal legislation now protects many parents of children with disabilities from discriminatory hiring and firing practices and provides for leaves of absence so parents can care for their children’s special needs.
The Americans with Disabilities Act
The Americans with Disabilities Act (ADA), which applies to businesses with 15 or more employees, protects parents from discrimination in hiring and firing decisions. Simply put, an employer cannot fire you or refuse to hire you just because you have a family member with a disability. On the other hand, although the ADA requires businesses to accommodate applicants or employees with disabilities, it does not require similar accommodations for parents of children with disabilities. For example, a uniformly applied attendance policy does not violate the ADA even if it has a more severe effect on employees who have family members with disabilities.The Family and Medical Leave Act of 1993
The Family and Medical Leave Act (FMLA) of 1993, which became fully effective in February 1995, secured sorely needed leave and flexible-hour options. FMLA requires covered employers to provide eligible employees with up to 12 weeks of yearly, unpaid leave for personal health problems, to care for a new child added to the family through birth or adoption, or to care for “an immediate family member with a serious health condition.”FMLA applies to all private-sector businesses with 50 or more employees and to public agencies or school systems with 50 or more employees within a 75-mile area. FMLA-eligible employees have worked for a covered employer for at least 12 months, have worked at least 1,250 hours over the past 12 months, and work at a location where at least 50 other people are employed by the employer within 75 miles.
Most disabilities meet the FMLA definition of “a serious health condition” – “a chronic or long-term condition that is incurable or, it not treated, would likely result in a period of incapacity for more than three calendar days.” A chronic condition is defined as one “that requires periodic visits for treatment by a health care provider, continues over an extended period of time, or may cause episodic rather than a continuing period of incapacity.” In other words, FMLA leave can be used for any absence related to your child’s disability as long as your child is receiving ongoing treatment from a health care provider – which may include a doctor of medicine or osteopathy, a podiatrist, a dentist, a clinical psychologist, an optometrist, a chiropractor, a nurse practitioner or a Christian Science practitioner. It is not necessary that your child actually see the health care provider each time you use FMLA leave.
Scheduling Leave
FMLA leave may be taken in hours, days or weeks – in one continuous block of time or intermittently when “medically necessary.” (Note: FMLA applies somewhat differently to school employees. For more information, contact your local office of the Wage and Hour Division, U.S. Department of Labor.)You may be required to provide 30 days advance notice when your need for leave is “foreseeable.” This would apply to surgeries, therapies or other procedures that can be scheduled in advance. When emergencies arise, you must give notice as soon as is “practicable.”
Either you or your employer may choose to use accumulated paid vacation or sick leave to cover some or all of your otherwise unpaid FMLA leave. Furthermore, if you receive group health insurance coverage through your employer, your employer must maintain it while you are on leave.
Job Guarantees
Most employees taking FMLA leave are guaranteed restoration to their previous job or an equivalent position upon returning to work. However, these protections are not guaranteed for “key employees,” defined as salaried employees who are among the highest-paid ten percent of employees within 75 miles of the work site.
An employer may cite “grievous economic injury” as a reason to refuse reinstatement to a key employee. In such cases, the employee must be notified and offered a “reasonable opportunity” to return to work at that time.
For More Information
ADA information can be obtained from regional ADA Technical Assistance Centers; call 1-800-949-4232. For information on FMLA, call your local office of the Wage and Hour Division of the U.S. Department of Labor, the number is listed in the government-listings pages of the phone book.If you work for a small employer who is not covered by these federal regulations, you may want to investigate applicable state or local laws. ADA Technical Assistance Centers can refer you to someone knowledgeable about state and local disability discrimination laws. And your state’s Commission on Women can tell you whether or not your state has its own parental leave law. (To locate your state’s commission, call the National Association of Commissions on Women at 1-800-338-9267.) State and local laws may provide even broader protections than federal regulations. By combining ADA and FMLA provisions with state laws, parents of children with disabilities can often weave together strong employment protections to help them keep their jobs.
From “Exceptional Parent” © 1996. Used with permission from PACER Center, Inc., Minneapolis, MN (612) 827-2966, www.pacer.org. All rights reserved.
How to Select a Behavior Therapist
by Dr. Michael JenikeOver the last two decades, it has become increasingly clear that optimal treatment for most people with OCD involves the combination of medication plus the behavior therapy techniques of exposure and response prevention. Since many psychiatrists are now familiar with the use of serotonin selective reuptake inhibitors (SSRIs), it is often quite easy to locate psychiatrists who can prescribe medications. However, there remains a shortage of competent behavior therapists who have experience in treating OCD patients.
Since OCD patients are sometimes led to believe that a therapist is qualified in behavior therapy when they are not, it is important for the consumer to be armed with information and questions that can help them determine if a therapist is indeed competent and experienced. To gather information that may shed some light on this subject, I asked number of experienced behavior therapists what they would recommend. The following behavior therapists were consulted: Drs. Lee Baer, James Claiborn, William Minichiello, and Nancy Keuthen. In addition, I reviewed Dr. Jonathan Grayson’s article in the April 1996 issue of the OC Foundation Newsletter and Dr. Baer’s book Getting Control.
In Getting Control, Dr. Baer notes that most behavior therapy is done by psychologists, usually at the doctoral level (PhD, PsyD, EdD), although some psychiatrists (MD) and some clinical social workers (MSW) provide behavior therapy too. When consulting a mental health professional, it is important to specifically ask for a behavior therapist who is licensed by the state in which he or she practices.
Dr. Grayson emphasized the importance of finding a behavior therapist who is willing and able to understand you as a person, not only as an OCD patient. As with any therapy, your relationship with the therapist is of utmost importance, especially since he or she will be asking you to do things that you find inherently uncomfortable.
You will need to ask the therapist what technique he or she uses to treat OCD. If the therapist has never heard of exposure and response prevention or is vague around discussing these treatments, it may be best to look elsewhere. You need to know what these techniques involve to interpret what you are being told. The exposure part of the therapy involves actually confronting the source of the anxiety and/or discomfort. For example, a person afraid of contamination from public bathrooms will be asked to go with the therapist to a bathroom and touch some "contaminated" item in the bathroom. The response prevention part of the therapy occurs when the patient does not wash her hands while feeling contaminated. Over time and with repeated sessions, the discomfort diminishes until the contaminated item no longer produces anxiety or discomfort. The behavior therapist then will have the patient similarly tackle an even more stressful situation until all of the fears have been confronted. This gradual process of exposing oneself to a fear situation and then not giving in to the ritualistic response is therapeutic for the patient. For many patients, pretreatment with medication makes the process less anxiety provoking and hastens or facilitates the overall improvement.
Thus if the therapist says that his main technique involves relaxation therapy, you can be quite confident that he is not experienced because relaxation is not effective for treating OCD. If the therapist tells you that the root of your problem lies in some difficulty with your early toilet training and this is why you have OCD, you should also find someone else. In the not too distant past, parents were told that they had caused OCD symptoms in their child by incorrect toilet training or even some type of abuse. We do not know precisely why OCD symptoms develop, but it is certainly not the parents’ fault.
You might ask where a potential therapist learned about this type of behavior therapy. Did they go to a behavioral psychology graduate program or do a post-doctoral fellowship in behavioral treatment? How many patients have they treated with behavior therapy, and what is their success rate? How much of their practice currently involves anxiety disorders and especially OCD? There are other ways that a therapist can learn effective behavior therapy techniques. For example an American Association of Behavior Therapy (AABT) or Obsessive Compulsive Foundation workshop can help prepare a therapist for this type of work. Also if your potential therapist is a member of AABT or SBM (Society of Behavioral Medicine), this may increase your confidence that he or she is heavily involved in behavior therapy.
All of the behavior therapists that I consulted felt that a good behavior therapist for someone with OCD should acknowledge the role of medication in treatment of this disorder.
Another useful and important question might address the therapist’s willingness to leave his/her office if needed to do the behavior therapy. It is sometimes necessary to go out to touch garbage in the real world, visit public bathrooms as in the example above, drive with the patient, and a therapist that will only sit in his/her own office will not be as helpful as a more active therapist.
These are some broad guidelines that can help the consumer determine whether or not a therapist is qualified to do exposure and response prevention. Also, the therapist’s response to your questions is probably a good guide to much of what you want to know about a prospective therapist. If he or she is guarded, withholding of information, or becomes angry at your requests for information, you should probably look elsewhere. On the other hand, if the therapist appreciates how important a decision this is for you and is open, friendly, and knowledgeable, you may have a gem of a therapist. You have a perfect right to ask questions; this is your life and health.
Dr. Jenike is Professor of Psychiatry, Harvard Medical School, and Associate Chief of Psychiatry and Research Psychiatrist and Director, Obsessive-Compulsive Disorders Clinic and Research Unit, Massachusetts General Hospital. Reprinted with permission.
Transition
A Parent’s Guide for Transition of Special Needs Children from Elementary to Middle and/or High School by Pat Morton (reprinted with permission from 2/99 SEAAC Newsletter)Transitions can be difficult for all of us. They can be especially difficult for children with learning disabilities. One of the potential ravagers of a learning disability is low self esteem. This makes the transitions even tougher. For parents of learning disabled students, this is also a frightening time. The jungle out there could be made easier with a guide. There are many resources which are helpful, but how do you wade through it all?
Parents want to know what questions to ask about prospective schools and teachers. They want to know who will have their child’s best interest at heart. Who will be able to make the accommodations to create the best situation for learning success?
With these wants there are needs: a need for parents to find out what will work best for their child, a need for parents to be informed about their child’s options for accommodations, and a need to understand what schools are available. Parents need to be involved but just being involved is not enough. They need a framework so that they can focus their involvement, to be an effective advocate for their child.
At the first level of decision making you want to weed out the programs that just won’t work. Considerations at this level should include:
Some things to keep in mind in forming this vision for your child:
Oral or untimed tests
Note takers
Books on tape for class
Allowances for volume of work
Tutors in class
Assignments given both orally and written
Finally, a few words of wisdom. Remember to get a feeling for the entire program. Try to sense if it will continue to be a positive place even if there are some changes in staff. When you are down to a short list of two or three schools, spend some time there between classes and in the lunch room to get a better sense of the intangibles such as atmosphere and attitude in staff and students. Are adults out and about monitoring students and interacting with them? Do you think that your child will be lost in the shuffle or will some staff take the time to make that human connections? Ask your child if he/she would not feel safe at any of your selections. Trust your instincts as well as your intellect. This is a big task that is worth the effort. Break it down into manageable chunks. Start early and talk with others who have gone through it. Good luck.
Reprinted with permission from 2/99 SEAAC Newsletter.
Finished your holiday shopping?
We are in the process of partnering with the not-for-profit support organization GreaterGood.com so you can simplify your shopping life, and support your TSA chapter at the same time!Simply log on to our website at www.tourette.net/wa and click on the GreaterGood.com logo, or visit their site directly at www.greatergood.com and choose TSA-WA State Chapter as the not-for-profit organization you are supporting. Then, shop at over 60 on-line stores, including Amazon.com, 1800Flowers, eToys, Land,s End, Office Max, and Sharper Image. You pay the same price as if you shopped directly at these on-line stores, but five percent or more of every purchase you make will be sent to our chapter. It,s that easy!
Check our website for updates on the partnering arrangement. Once the process is complete, all of your on-line shopping can benefit your TSA chapter. Let your family and friends know that they can support our chapter while shopping, too.
n.com, 1800Flowers, eToys, Land’ill be sent to our chapter.
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