CONNECTIONS

CHAPTER NEWS

Join Us for a Chapter Picnic!

Driving directions are: from I-5, take exit 143 (SeaTac Mall exit 320th St.) and proceed west (right) on 320th. Turn right at 23rd Ave. S. (at a McDonalds). Follow 23th Ave. S. as it winds to the right and to the left, approximately (o) mile. Turn left onto S. 312th at the 3-way stop. Take the first right turn, which is the entrance to Steele Lake Park. Proceed straight toward the lake. This is a great opportunity for kids who have TS to meet one another and for people to just relax and have a good time. Hope to see you there!

Raising Awareness in the Schools

Our chapter has been asked to help provide speakers for the assembly, an activity booth and follow-up materials for the classroom. For this first YADA day, we will be contributing the informational materials, and possibly a speaker. If you are interested in being a speaker (4-6 minute talk) or have an idea for an activity booth, please contact our president, Roseanne Torgerson at 206-322-4754 or wtorgerson@uswest.net.

Chapter Budget Passed for FY 2001

Conference Video Now Available

IEP Workshop Planned

Consider Donating to Our Chapter of the TSA Through a Workplace Giving Program

It's easy: There's no need to write and mail checks. Just complete the applicable forms once a year, and your employer takes care of the rest.

It's flexible: You decide how much to give. Even a couple dollars each paycheck is a big help to our chapter, plus you can also designate any other organizations you may wish to support.

It's efficient: Frequent, regular giving means frequent, regular chapter revenue. In addition, if you are eligible to deduct charitable contributions on your federal income tax return, you pay less tax.

The next time you have an opportunity to contribute through United Way or another a payroll deduction program, please think seriously about specifying the Tourette Syndrome Association, Inc. Washington State Chapter as a recipient of your generosity. If you have questions about how to fill out the forms properly, contact our chapter Treasurer, Bill Zook, at (206) 367-4491 or tsawash@aol.com.

And don't forget about matching gift programs. Although each company has its own rules, in most cases, every dollar you give will result in two dollars for our chapter!

UPCOMING PROGRAMS

Employment Conference
Sponsored by Washington Initiative for Supported Employment, this is an annual conference bringing together people with disabilities and local and national leaders in the field of employment. It will be held June 20-22 in Ellensburg. Contact them at 206-343-0881, ext. 118 for a registration form. Scholarships are available.

Effectively Serving Children & Youth with Emotional and/or Behavioral Disabilities
Sponsored by the Washington Re-EDucation Association, this is meant for educators working with children with these difficulties. It will be held August 6-10 in Shoreline, with clock hours available. Contact them at 206-230-5292 or WAREA@earthlink.net for a registration form. Encourage your child's teacher to attend!

MEDICAL NEWS

St. John's Wort and Depression
The first large study in the U.S. to evaluate the use of St. John's wort, an herbal remedy, in alleviating depression has shown that it is useless. Two hundred patients with depression found that it worked no better than a placebo. This contradicts a number of smaller studies which did find it effective in mild to moderate cases of depression. In one previous study, it had been found as effective as Zoloft, an SSRI class of drug which is commonly used to treat depression, anxiety and OCD. However the American Psychiatric Association praised this most recent study as rigorous and sophisticated and said that it shows if someone is suffering from a major depression, he or she should not rely on this herb.

Magnets and Depression
If St. John's wort has been shown not to be an effective alternative to pharmacological ways of treating depression, there is a new therapy on the horizon which does show some promise. A current study is underway at Harborview Medical Center in Seattle to treat depression by means of stimulating the brain with a magnet. Transcranial magnetic stimulation produces a pulsing electric current that generates a constantly changing magnetic field which penetrates the skull. The magnetic field, in turn, produces an electric current inside the brain. It is similar to electric shock treatment in that both send a current into the brain to stimulate electrical activity. A major difference is that electric shock therapy affects many areas of the brain including the memory and motor control areas. Magnetic stimulation is limited to the pre-frontal cortex which makes the chances of seizures of memory loss much less likely. Results of the study have shown that approximately 50% of the test subjects have shown improvement in their depression. Doctors says these were patients who weren't helped by SSRI medications or who couldn't tolerate them. The study is ongoing and looking for test subjects. Contact Cara Fuchs at 206-731-2436 or check the web site at www.washington.edu/healthresearch. Scroll to "keyword search" and type in "magnet."

Low Cost Prescriptions
Because of no or very inadequate health insurance, many people cannot afford prescription medications necessary to their well being. There is a little known program offered by pharmaceutical companies which may be able to help those in need of medications which they cannot afford. The Pharmaceutical Research and Manufacturers of America (PhRMA)work with physicians to provide needed medicine free of charge. Since there are a large number of programs offered by various pharmaceutical companies, PhRMA has created a directory of the programs listed alphabetically by company. Information about how to make a request for assistance in cooperation with your doctor, what prescription medicines are covered, and basic eligibility criteria are listed for each program. Your physician can obtain copies of this directory by calling (800) 762-4636. Information can also be found on-line at: http://www.phrma.org/searchcures/dpdpap/

The paper work involved may be somewhat difficult to fill out. Because of this, a nonprofit organization has stepped in to help those who may need assistance. This group, The Medicine Program, will work with your physician, to assist you in enrolling in one or more of the patient assistant programs offered by PhRMA. The qualifications for each program may vary, although in many cases even those with relatively high incomes may qualify if medical expenses are particularly high. There is a small fee of $5.00 charged by the Medicine Program for processing each prescription request. Most prescriptions are initially filled for a 3 month period. After sending in your fee and information, the organization will prepare the necessary paperwork, including a letter to your physician which provides your doctor with information about the program and requests his/her cooperation. The letter for your physician will also provide an access number to your particular PhRMA program sponsor.
If you believe there is a possibility that you may qualify, and would like help from the program you can call 1-573-996-7300 to request a free brochure/application. They can found on-line at: http://www.themedicineprogram.com/
In addition you can make a request in writing to:

The Medicine Program
P. O. Box 515
Doniphan, MO 63935-0515

1. The name, address and phone number of the person taking the medication.
2. The name of his/her medication(s).
3. The name of your doctor who prescribes the medication.
4. The Medicine Program requires a $5.00 processing fee for each medication requested. This fee is payable to The Medicine Program.

If you are ineligible for assistance from all applicable pharmaceutical companies, The Medicine Program guarantees a full refund of your processing fee upon written request. For more detailed information contact The Medicine Program.

Keep in mind, that there is no requirement to go through The Medicine Program to participate in the PhRMA programs. You can just ask your doctor about it. If they are not familiar with the program, provide them the following information so they contact PhRMA directly. Phone: (800) 762-4636 or on the web at http://www.phrma.org/searchcures/dpdpap/

Killing Strep Throat Bacteria
Scientists have discovered a way to kill the streptococci bacteria on contact using enzymes produced by tiny viruses that infect bacterial cells. They are optimistic that this technique will not cause the bacteria to evolve resistant strains as antibiotics do. Another benefit is that because only targeted bacteria are killed, normal bacteria needed for health are not destroyed, something which antibiotics do. This streptococci bacteria causes strep throat, some ear infections, the flesh destroying disease and has been implicated in causing TS symptoms through PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections).

Meditation Video for OCD
A new videotape entitled "The Kundalini Yoga Meditation Video for Obsessive Compulsive Disorder" has been released by David Shannahoff-Khalsa. Eleven different meditation techniques are taught. It is helpful for OCD sufferers wishing to use it as a guide to daily practice or for therapists who have OCD patients who are treatment resistant to medication or refuse cognitive behavioral therapy. These techniques were taught at the Obsessive Compulsive Foundation Annual Conference in Chicago last August. A clinical trial involving the meditation protocol was funded by the Office of Alternative Medicine at the National Institutes of Health, the results of which were published in Shannahoff-Khalsa, DS, Ray LE, Levine, S, Gallen, CC, Schwartz, BJ, Sidorowich, JJ "Randomized Controlled Trial of Yogic Meditation Techniques for Patients with Obsessive Compulsive Disorders," CNS Spectrums: The International Journal of Neuropsychiatric Medicine, vol. 4, no. 12, pp. 34-46, 1999. To purchase this tape for $59.99, contact G.T. Enterprises, Box 13 Shady Lane, Espanola, NM 87532, 1-800-829-3970 or e-mail Gtent@roadrunner.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.

SCHOOL NEWS

Teasing cannot be prevented, and children cannot control what others say; however, they can learn to control their own reactions. Parents can teach their children the simple strategies listed below that will empower them and reduce feelings of helplessness. When children realize that there are effective strategies that they can use in teasing situations, their coping skills increase.

1. Self-talk. Encourage children to think about what they can say to themselves when they are in a teasing situation. A child could say to himself, "even though I don't like this teasing, I can handle it." A child should ask himself, "Is the tease true?" Often it is not. Another important question is, "Whose opinion is more importantÖ the teaser's or mine?" It is also helpful for the teased child to think about her positive qualities to counteract the negative remarks.
   
2. Ignore. Displays of anger or tears often invite more teasing; therefore, it is often effective for children to ignore the teaser. The child who is being teased should not look at or respond to the teaser. Children should try to pretend that the teaser is invisible and act as if nothing has happened. If possible, walking away from the teaser is encouraged. Parents can role play "ignoring" with their children and praise children for their excellent "acting." It should be noted that ignoring may not be effective in prolonged teasing situations.
   
3. The "I message." The "I message" is an assertive way for children to effectively express their feelings. The child expresses how he feels, what has caused him to feel that way, and what he would like others to do differently. For example, a child could say, "I feel upset when you make fun of my glasses. I would like you to stop. This strategy generally works better when expressed in a more structured or supervised situation, such as a classroom. When used in other situations, such as recess or on the school bus, it may lead to more teasing when the teaser perceives the child being teased is upset. Nevertheless, it is an easy skill to teach children to help them deal with many situations. The child should learn to make eye contact, speak clearly, and use a polite tone of voice.
   
4. Visualization. Many young children respond well to visualizing words "bouncing" off of them. It provides them with the image of not having to accept or believe what is said. This image can be created by showing how Nerf balls bounce off a person. Another effective visualization is for a child to pretend he has a shield around him that helps the teases and bad words bounce off. Again, this technique gives children that message that they can refuse these put-downs.
   
5. Reframing. Reframing is changing one's perception about the negative comment; it is turning the teasing into a compliment. For example, a child teases another about her glasses, "four eyes, four eyes, you have four eyes." The child being teased could politely respond, "Thanks for noticing my glasses." The teaser is usually confused, especially when there is not a reaction of anger or frustration. Another child might respond to a tease by saying, "That is a great put down."
   
6. Agree with the facts. Agreeing with the facts can be one of the easiest ways to handle an insult or tease. The teaser says, "You have so many freckles." The teased child responds, "Yes, I have a lot of freckles." The teaser taunts, "You are such a cry baby." The teased child can answer, "I do cry easily." Agreeing with facts usually eliminates the feelings of wanting to hide the freckles or the tears.
   
7. "So?" The response of "So?" to the teaser conveys an indifference that the tease doesn't matter. Children find this response simple yet quite effective. This strategy is humorously addressed in Bill Cosby's book The Meanest Thing to Say.
   
8. Respond to the tease with a compliment. When a child is teased, it is often effective to respond with a compliment. For example, if a child is teased about the way he runs, he can answer, "You are a fast runner."
   
9. Use humor. Humor shows that little importance is placed on the put-downs or mean remarks. Laughing can often turn a hurtful situation into a funny one.
   
10. Ask for help. At times, it is necessary for a child to seek adult assistance or intervention if the teaser is persistent.

Guidance on Mediation
The federal Office of Special Education Programs (OSEP) has issued a question and answer document in regard to the use of mediation to solve special education disputes between parents and school districts. It restates the requirements reflected in the final 1997 IDEA regulations and is of use to both parents and education officials. Find this document at http://www.directionservice.org/cadre/idea/

Teacher's Guidebook on Behavioral Problems
The US Department of Education has released a new guidebook entitled Teaching and Working with Children Who Have Emotional and Behavioral Challenges. It is a comprehensive rsource designed to help teachers who educate students with emotional and behavioral difficulties. Parents can also use the guidebook to learn how to address their children's needs and to work effectively with their children's teachers. Topics include:
SHow to meet the provisions of the 1997 IDEA
SCauses of emotional and behavioral difficulties
SWhat you need to know about the student who takes medication
SHow to build a positive classroom climate
SWays to manage aggressive behavior
SComponents of effective alternative settings
SWhen to utilize school-based supports
SHow to work in collaboration with families
Visit http://www.air.org/cecp/teachingchildren.htm for more information.

ADULT ISSUES

by Michael Richardson

What is DVR?
The mission of the Division of Vocational Rehabilitation (DVR) is "to enable individuals with disabilities to prepare for, obtain and retain employment." Employment contributes to a person's ability to live independently in their community. DVR staff believe that every person has the right to work.

With offices statewide, DVR has been a partner with Washington State's communities for over 70 years. As a division of the Department of Social and Health Services (DSHS), DVR is designed to help meet the employment needs of people with disabilities and of businesses.

Eligibility for DVR Services

You are eligible for DVR services if you:

1) Have a physical or mental disability that results in a substantial barrier to employment; AND
2) You require vocational rehabilitation services to get or keep a job.

You will work with DVR staff to collect information about your disabling condition(s), barriers to employment and your ability to benefit from vocational rehabilitation services. DVR must also collect documentation that proves you can legally work in the United States.

Potential DVR Services

Medical Evaluation determines a person's strengths and vocational limitations through expert medical, psychiatric, social and psychological evaluations.

Vocational Assessment identifies a person's interests, readiness for employment, work and job opportunities in the community.

Counseling and Guidance establishes an ongoing relationship between the counselor and the person in which they explore the evaluation results and labor market opportunities, and develop a realistic plan to go to work.

Restoration increases work potential and ability to retain a job through use of medical and assistive technologies.

Job Preparation builds work skills needed to enable a person to obtain employment. Services may include volunteer experience, on-the-job training, vocational education or classroom training.

Support Services support the person in completing the rehabilitation plan and becoming employed. Services may include assistance with transportation; the purchase of tools, equipment, books or work clothing; or providing support for independent living.

Job Match/Placement assists in developing work opportunities and in obtaining and maintaining a job suited to the person's interests and capabilities.

Follow-Up follows a person's progress on the job for at least 90 days to ensure that employment is satisfactory.

Post-Employment provides short-term services to enable the person to stay employed.

Independent Living provides evaluations and services that will assist persons in dealing with life issues that get in the way of rehabilitation and employment goals. Examples include accessing community resources, self-advocacy skills, money management and personal organization skills.

Assistive Technology Services assist a person in the evaluation, selection, acquisition, or use of an assistive technology device to increase, maintain, or improve their functional capabilities.

Funding

Funding for DVR services is based on financial need. Before finalizing a Rehabilitation Plan, you are required to disclose information about your financial resources and liabilities. A worksheet is used to determine whether you have resources available to contribute to your Rehabilitation Plan costs. Alternate funding resources are explored and used whenever possible. While DVR offers a wide range of services, they will not pay for routine living expenses (e.g. rent, food).

Order of Selection

Under the 1973 Rehabilitation Act, as amended 1998, when DVR is unable to serve all potential applicants due to either a shortage of staff or funds, DVR must establish criteria for the order in which eligible individuals will receive vocational rehabilitation services. The criteria for establishing the order of selection must be based on the level of severity of an individual's disability and the date of application for VR services. Those with the most significant disabilities are given the highest priority in the selection process. Washington State DVR officially went into Order of Selection on November 6th, 2000.

Services for People with TS

Not everyone with TS is eligible for DVR services. Eligibility for services will depend on the significance of the barriers to employment one faces because of TS. Even if eligible, the availability of services will still depend on the Order of Selection process.

Prior to developing a Rehabilitation Plan (Individual Plan for Employment), an eligible participant will go through a vocational assessment. During the vocational assessment process, you and your DVR counselor gather data and review information about your abilities, skills, interests and readiness for employment. Then you will analyze current labor market information and job opportunities in your local community. This process also includes a review of other factors that impact your employment options, such as housing, transportation, medical needs and your family situation. You will use this information to make an informed decision about your vocational goal and the services necessary to become employed. The information gathered during the vocational assessment process may include one or more of the following elements:

1) Information about your disability, education, social or family situation, as well as other factors that may impact your employment options.
2) An evaluation of your knowledge, skills, abilities and interests.
3) An assessment of your work history, work habits, and work tolerances
4) A review of the local job market.
5) An evaluation of your assistive technology needs to determine necessary workplace accommodations (e.g., equipment or devices).
6) An analysis of your salary and benefits needs.

This is an individualized process. Your DVR counselor will work with you to tailor the assessment to your specific situation.

For more detailed information on DVR services and to find an office nearest to you, access the web site at http://www.wa.gov/dshs/dvr/

Or, contact the state office in Olympia at:

Toll Free: (1-800) 637-5627 Voice/TTY
Voice/TTY (360) 438-8000
FAX: (360) 438-8007

You can also schedule a DVR orientation appointment at your nearest office. From there, you can decide if you want to apply for services or not.

(Information obtained from Washington State Division of Vocational Rehabilitation web site http://www.wa.gov/dshs/dvr/)

Michael Richardson worked at the WA State Division of Vocational Rehabilitation (DVS) as a VR Counselor and VR Supervisor from 1994 to 2000. He is currently a Project Coordinator for the DO-IT Program at the University of Washington.

LEGISLATIVE NEWS

FEDERAL LEGISLATION

Family Opportunity Act
This bill would allow middle income families of disabled children to buy into Medicare when their own insurance is insufficient to meet the child's needs. It has passed in both houses of Congress. Full funding for the Act is included in both the House and Senate budget resolutions. It is opposed, however, by Senate Republican leaders Lott and Nickles who have the power to block its passage despite strong support. It is important that you contact your congressmen and senators and the President and let them know how important this bill is.

The Mental Health Equitable Treatment Act of 2001
This legislation aws introduced by Senators Domenici (R-NM) and Wellstone (D-MN), and would help end the disparity in health coverage for people with neurological disorders. The bill:

• requires that all limitations on the coverage for "severe biologically-based mental illnesses" be equal to those for medical and surgical benefits
  
• ends arbitrary caps on inpatient days and outpatient visits,
  
• ends higher co-payments and deductible requirements that apply only to treatment for mental illness,
  
• lowers the current 50-employee small business exemption to 25, thereby expanding parity coverage to an additional 15 million people,
  
• removes the current September 30, 2001 sunset provision of the 1996 Mental Health Parity Act.

Individuals with Disabilities Education Act
For fiscal 2001, Congress adopted spending increases for IDEA's Part B state grant program for services to school-aged children. The Presidential budget calls for a $1 billion increase to IDEA, Part B. This would increase the federal government's contribution to the cost of providing special education services to 17% up from 14%. The states must pay the remaining portion. IDEA has been underfunded since its inception, so even this small increase is good news. Congress also approved increases to Part D programs that support research, personnel preparation and other activities necessary for the effective implementation of the law.

SSI and Employment
A new federal guide for people with disabilities became available last April for individuals on SSI who wish to return to work. The guide explains your rights under the Americans with Disabilities Act (ADA). Contact the Social Security Administration at 1-800-772-1213 for information on ordering. It is also available on the web at http://www.ssa.gov/work/workta2.html

Americans with Disabilities Act
The United States Supreme Court has decided to hear two employment cases that could limit the scope of the ADA. As you may know, the Court recently ruled that states are shielded from paying monetary damages under the ADA. This time private sector employers are challenging the ADA's employment provisions. One case involves the rights of an employee whose impairment prevents him from doing a certain task important to his job. The question before the Court is whether an employee in this situation is considered disabled under the definition of the ADA. The second case will decide whether an employer must accommodate a disabled employee by giving him/her a new job even if another worker with more seniority is in line for the same position.

The State of Arkansas has also asked the U.S. Supreme Court to hear a case which would strike down Section 504 of the Rehabilitation Act. Section 504 prohibits discrimination of individuals with disabilities by recipients of federal funds. Many students with Tourette Syndrome receive needed accommodations at their schools under this Act. The case in question, Arkansas Department of Education v. Jim C., involves a child with autism. His parents allege that the state did not comply with disability laws, including Section 504. Arkansas argues that Congress does not have the constitutional authority to subject states to private lawsuits under the Rehabilitation Act. Many disability rights groups are protesting the recent Court opinions which are weakening the ADA. If the U.S. Supreme Court agrees to hear this case, you may want to write Governor Locke and Washington State Attorney General Christine Gregoire and request that our state sign onto an amicus brief in support of the ADA. We will keep you updated on this case.

The ADA Notification Act (HR 914) was re-introduced in March by Rep. Foley (R-FL). This Act would require a person with disabilities to give businesses a 90 day notification of ADA violations before filing a lawsuit. In effect, this bill would allow businesses to put off complying with the accessibility portion of the ADA until they are caught discriminating. Once they receive notice of their discriminatory practices, they have 90 days to comply with the regulations. A lawsuit can only be filed if they refuse to make accommodations within 90 days. Senator Inouye (D-HA) recently introduced a similar bill in the Senate. This bill was originally introduced as HR 3590 last year. Fortunately, it was never passed into law at that time. It is important to contact your U.S. representatives and let them you know you oppose this attack on the ADA.

WASHINGTON STATE LEGISLATION

Mental Health Parity
Due to funding shortages many laws we had hoped would be passed have died in committee. This bill which would require mental health benefits which are comparable to other health care benefits was scaled down to require comparable benefits for children only in a vain attempt to assure passage. It still died in committee. A substitute bill has been drafted which would provide improved mental health services for children. This may at least be a step in the right direction. Even this is not assured of passage.

Ticket To Work
The State Senate budget included funding for this program. A similar bill did not make it through the House during the regular legislative session, but has been reintroduced for the special session. This program would allow those individuals on SSI and SSDI to keep their Medicare benefits, if necessary, if they find employment.

School Bullying
A bill aimed at curtailing bullying and harassment in schools has been held up in the State House of Representatives. The Senate passed its version of the bill which has widespread support from the PTA, teacher's union, polices groups and others. However some in the House claim it was a vehicle to open the door to the discussion of homosexuality in schools and could possibly censor their right to condemn homosexuality. Supporters point out that the legislation was drawn up to protect all students, with no special provisions for any one group.

Hopefully next year, we will have a better opportunity to get needed legislation passed. Writing or even calling your representatives really does make a difference. Although we do not have the finances that corporations have to influence legislation, if we work together, we can make the lawmakers sit up and take notice of issues important to us and our families. Because of the budget difficulties in our state, it is critical that we remain active in advocating for ourselves and our children.

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