| Volume VI, Issue 2 | June, 1999 |
CHAPTER NEWS
Bowl-a-Thon Combines Camaraderie and Fund Raising
Our chapter held its first annual bowl-a-thon fund raiser on May 2. Close to 40 members had a great time meeting one another, eating pizza and trying to knock down a few pins (the bumper guards helped considerably!) We raised $1300 which will allow us to continue to fund our programs to help those with TS in our communities. Special thanks to Karen Sadewasser who handled registrations, Debi Betts, Meg Howard, Ann Denzinger, Rhonda Earl, Bob Kuss and Bob McLaughlin who helped out at the bowling alleys and to our support group leaders who phoned chapter members encouraging their participation in the event. The following is a list of people who gave donations for this fund raiser. Thank you all so much for making this a success!
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Dale Anzai Rena Bailey Ester Bailey Jan Bell Susan Benton Rita Bernardo Geoffrey Bragg Brenda & Greg Brask & family David Brask & Lena Coleman Paul Brask Liz Budbill Carolyn Carbajal Stu Clark David Dannenberg Nadya Demarius Lisa Downen Christoph & Mary Clayton Enderlein Linda Evangelista Nancy Fletcher Freeman Security Services Danette Feuling Annette Gamache Ross Gibbens J.K. Gould Mick & Suzanne Graeber Pat Graeber Sharon Gravatt J. Greig |
John & Pete Gray Kent & Vicki Hall Julie Haney Lavonne Hawkins Gay Huckins Robert Jankelson Jessie Keller Ron Kisch Iris Kishi Dielda Kuhlmann Bob Kuss Tony Lang Barbara LaPalm Howard Lazarus Lily Leach Lorna Little Bill Littler Chris Mason Edie Matukla Kirk McCollach Mike McClure Beth McConville Zita McLaughlin Joe & Joan Merzlak Shawn Mobley Lisa Morales Karen Morrissey |
Cindy Morvan Claudia Murphy Lorraine Nowlin Van Olson Elizabeth O'Shaughnessy Tonja Owens Pam Parker PDQ Printing Cheryl Porter Chris Pound Hazel Rosenthal Glenn & Sally Rzeppa Kay Sadewasser Linda Sadoski Irv Schnell Dave Smith Lisa Smith Joan Sugiyama Greg & Robin Taketa & family Kim Thacker Regina Thomas Bill & Roseanne Torgerson & family Debbie Vessey Jo Wiedman Linda Willis Michael Willis Lynn Willoughby |
It's Picnic Time!
Our long-awaited summer is finally approaching. To celebrate, the Federal Way support group is hosting a potluck picnic at Steel Lake Park on Saturday, August 21. Everyone is welcome! Steele Lake has a wonderful play area as well as swimming in a freshwater lake. There's plenty of space for frisbees, volleyball or whatever. Bring your toys! We will recreate from 10am-2pm at site 3. Bring your own paper products, beverage and a dish to share (salad, dessert, chips, fried chicken, etc.). 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 23rd Ave. S. as it winds to the right and to the left, approximately ¼ 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. Site 3 is just past the large parking area on the left. What a great opportunity to meet some new friends and let the kids play!Grant Award
We are pleased to announce that our chapter was recently the recipient of a $1000 grant from the Schiff Foundation. This grant will enable us to target 24 of the state's 296 school districts to receive educational materials about TS. The special education coordinator (or other appropriate person) in these districts will receive the TSA video "A Regular Kid, That's Me" and four TSA publications specifically geared toward educators. After they have received this information, we will make follow-up calls to see if they have questions and to assess how they will use it. We have selected some of the more rural districts where knowledge of TS and associated disorders is sadly lacking. Thanks to the Schiff Foundation for enabling us to start this school awareness program. If anyone knows of other organizations who might be willing to support our efforts with a grant, please let the board know.Lending Library
Our chapter has started a lending library. It consists of books, audiotapes and videotapes. Some of the tapes are TSA produced, others are tapes of past mini-conferences or chapter meetings. Nationally televised shows on TS and OCD are also on tape. We plan to make these items available to borrow for a two month period through the support groups. They may be checked out at a support group meeting or at one of our mini-conferences. For the first time, we have allocated a small amount of money in our annual budget to purchase items for the library. We would love to have donations to enable us to build up our library more quickly. Do you have a book on TS or related disorders that you no longer refer to and would like to donate? Would you be willing to purchase a book or tape specifically for our chapter? Our members would be most appreciative and we would honor you with a nameplate placed in the book or on the tape. Sharing information on TS with those who are just beginning the journey is a wonderful gift.In the Spotlight
Kudos go to Bryan Smith of Federal Way. He was featured in a May 12 article in the Federal Way Mirror entitled "When Your Body Is Your Enemy." This sensitive and informative article described what it's like to live with TS. Bryan is the son of Randy and Deb Smith. Deb is one of the co-coordinators of the Federal Way support group. Way to go, Bryan!Awareness
Board members have been busy attending special education resource fairs in the Seattle School District. These fairs, open to parents and educators, have information from a variety of organizations that advocate for or cater to kids with special needs. This is a good way to get information about TS out to the educational community. If your school district schedules resource fairs during the school year, we encourage you to volunteer to sit at a table representing TS. We can send you informational materials to have available to give to those who are interested. Contact the editor.
The author Gwyn Rubio was recently in Seattle to do a book signing and reading of her novel Icy Sparks. Set in 1950's rural Kentucky, the book chronicles the life of a young girl growing up with TS. Ms. Rubio was kind enough to donate an autographed copy of her book to our chapter's lending library (see article on lending library, above).
Board member Brian Cahill presented information on TS at a training of the Seattle Police Department Crisis Intervention Team last December and February. This team was developed by the SPD to give officers additional training and resources to be able to effectively respond in situations involving people in crisis for whatever the reason. Officers are trained to recognize and respond appropriately in such situations.
Brian reminded the officers that the majority of children and adults with TS are no more likely to encounter the police than persons without TS. Many of the officers were aware of TS and even knew other police officers with Tourette's. Brian did mention that Tourette Syndrome may be accompanied by one or more coexisting conditions that may impact upon a person's reaction to stressful situations. He then showed the officers the video, "Not the Usual Suspects" by the Tourette Syndrome Foundation of Canada. The intention was to raise the awareness of the officers; to ask them to keep in mind that unusual "behavior" is not always the result of mental illness, drug use, or a sign of disrespect.
The officers seemed universally interested, sensitive to the idea that an individual's response to the stress of being stopped and questioned by police officers can result in "behavior" that is not dangerous or disrespectful. Several officers asked questions about folks they encountered in the past. One officer expressed concern that children with special needs were being shortchanged in many ways; she specifically mentioned her disappointment that schools were too quick to suspend children with neurobiological disorders rather than help them. Each officer was given an information sheet with a list of resources about TS, including our national and state association phone numbers. Brian came away from both sessions with a positive feeling about the SPD Crisis Intervention Team and the effort they were making to understand people in crisis. An in-service to the Tacoma Police Department is planned as well.
SCHOOL NEWS
In 1998, former Representative Livingston of Florida introduced an amendment to IDEA which would have given local school districts the autonomy to set their own discipline policies for all students, including those who receive special education. This amendment was dropped under pressure from disability rights groups in exchange for a nine month study of federal special education discipline policies by the General Accounting Office. In order to ensure that the GAO uses factual information in its investigation rather than anecdotal reports, the National Parent Network on Disabilities is seeking family reports on how the discipline policies outlined in IDEA 1997 have been applied in the local school districts. It is important to include both positive and negative reports describing the disciplining of students with disabilities. Reports must only detail events that took place after June 4, 1997 and should be sent in as soon as possible. School personnel may also send in a report. Use the following format when making your report:1130 17th St NW, Ste 400This is a very important issue facing students with TS. Please take the time to file a report if you have dealt with a disciplinary action in the past school year.
Washington, DC 20036
Fax: 1 (202) 463-9403
Two years after IDEA was reauthorized, the final regulations concerning it have finally been published. In many instances, school districts have been waiting for the regulations before implementing some of the new language of the 1997 IDEA. The regulations are available on the Internet. One website address is http://www.wrightslaw.com/law/code_regs/Index_IDEA_Regs_990313.htm. There are new regulations regarding the discipline of disabled students. Schools may suspend special ed. students for as long as 10 days for major infractions of school rules without making special provisions for them. But for longer or subsequent suspensions, schools must provide whatever services might be necessary to allow the student to progress according to his/her IEP. Those services might range from as little as sending classwork home to furnishing tutors, psychological counseling and health-care assistance at home. The regulations allow a special ed. student to be transferred to an "appropriate interim educational setting" for up to 45 days if the child carries a firearm into school, possesses or takes drugs on school property, or is "substantially likely to injure" himself or others. Such disciplinary action also would trigger a review of the IEP and, in most cases, school officials would be required to order a study of the child's behavioral problems.
Excerpted from The Seattle Times, 3/13/98
If you have access to the Internet, there's a website that is worth visiting for parents of special ed. children. Reed Martin is an attorney who deals with special education law. His website is www.reedmartin.com. He offers an "advocacy tip of the week" which can give parents a lot of good information on their children's rights under the law. Here's a sample of what you'll find: Have your school personnel ever told you "none of our staff knows how to do that," or "I am a regular education teacher and I don't have time to do that" or "we would have to hire someone new and we don't have any money in the budget for that?" Guess what? Your state education agency and your school have been promising the federal government for over 20 years that, in return for receiving federal financial assistance, they will have the staff your child needs, or hire them, or train them. The promise is made in the Comprehensive System of Personnel Development (CSPD) that your local district, and your state, promise the federal government they have in operation. CSPD is found in the 1997 IDEA amendments at 20 U.S.C. 1412(a)(14).
SEACC, the Special Education Advisory & Advocacy Committee for the Seattle School District, is looking for parents to volunteer to sit on their committee. They have expressed an interest in having a parent who represents the TS community. Their members are dedicated to the improvement of educational programs, policies, and procedures for students who are covered under IDEA and Section 504. This is a wonderful opportunity to be an effective advocate and to have some measure of influence in the Seattle School District on issues affecting children with TS. It's often easy to feel like you're up against a brick wall when dealing with school districts. Here is an opportunity to effect positive change. If interested, contact Katy Rourke, 13010 14th Pl. NE, Seattle 98125. And please contact our chapter if you take the position!
NEWS YOU CAN USE
Two years ago, the Social Security Administration adopted new, stricter standards for children's disability benefits (SSI). As a result, many kids' benefits were lost. To respond to the outcry against SSI terminations, the U.S. Congress passed legislation allowing children whose SSI cash grant was terminated to continue to receive free health benefits through the Medicaid program. In Washington, the Department of Social and Health Services administers the Medicaid program. Parents should be aware that DSHS may not automatically extend Medicaid coverage to kids who've lost their SSI. In most cases, if your child's SSI was terminated, he/she should remain covered by Medicaid. If the coverage was terminated, it is likely a mistake and should be fixed.The Washington Initiative for Supported Employment is holding their annual Employment Conference in Ellensburg on June 23-25. Local and national leaders in the field of employment and self- determination will be presenting workshops and lecture focusing on supporting people with disabilities find meaningful employment. Fees range from $150-220. A limited number of stipends are available. Contact 1 (800) 752-4379 for registration information.
If you're looking for a summer camp for your child, here's one that might be of interest. Learn to Win Camp is sponsored by Children's Hospital. It's an overnight camp designed specifically for children with learning and behavior disorders. Kids with ADD, PDD and social skills deficits are encouraged to attend. It is held August 15-20th at Camp Kirby, located just north of Anacortes. Psychologists, nurse specialists, mental health specialists and activity specialists are in attendance with a camper to staff ratio of three to one. A wide variety of outdoor activities, crafts, drama and non-competitive group activities are offered. Contact Children's Bellevue at (425) 454-4644 for an application.
LEGISLATIVE UPDATE
The state legislative session is over. A number of bills that may have an effect on people with TS were passed into law. Here's a summary:Creation of the Children's Health Insurance Program. This law allows children in families with incomes up to 250% of the poverty level to have access to health care (about $41,000 a year for a family of four). Currently the cut-off is 200% of the poverty level. This should allow up to 10,000 additional children in our state access to health insurance.
Establishment of the developmental disabilities endowment fund. Recognizing that some people with chronic disabilities will continue to need support after their families are no longer there to help, this law will finance long-term care for persons with developmental disabilities through an endowment funded jointly by the investment of public funds and family contributions. As of press time, this bill was still on the governor's desk awaiting his signature.
Authorization of donation of surplus computers to schools and educational service districts with priority given to children with disabilities. This law authorizes the donation of computers and related equipment by the state of Washington to school districts. Currently surplus equipment is sold or exchanged at public and private sales. For many TS kids with fine motor skill deficits, the use of a computer can be a real benefit.
Creation of programs addressing disruptive students in regular classrooms. This law provides that, subject to available funding, schools are encouraged to provide training to regular classroom teachers working with disruptive students. Two sections of the law discuss having professional development institutes provide opportunities for teachers, principals and other school staff to learn effective research- based strategies for handling disruptive students, and to create a grant program to assist schools in providing alternative learning programs and settings for disruptive students in grades K through 8. (See article under School News, above, for an example of such a program.) Regular classroom teachers have often been woefully undertrained in dealing with children with behavior problems. This should help to alleviate that.
One bill which did not pass the legislature was the prohibition of health insurance discrimination on the basis of genetic information. This would have ensured that health insurance could not be denied or canceled, or the premiums raised if an individual requested or received genetic counseling, or if genetic information from the parents showed a children would be likely to inherit a disability. Hopefully, this bill can be reintroduced in the next session.
Another bill which died in the legislature was the mental health parity bill. We have been reporting extensively on this in past issues of Connections. The Washington Coalition for Insurance Parity intends to reintroduce the legislation at the next session. They plan to reach out to a broader range of organizations, and develop educational materials on parity to help spread the word about the need for parity in insurance coverage. At the start of the next legislative session, it would be helpful to contact your representative and ask for his or her support of this bill. In the meantime, last April the King County Board of Health passed a resolution urging the Metropolitan King County Council and the Seattle City Council and other employers to provide parity in mental health and chemical dependency treatment.
While we struggle to pass the mental health parity bill on a state level, U.S. Senators Domenici and Wellstone introduced legislation in April entitled the Mental Health Equitable Treatment Act of 1999 which would require full insurance parity for the most severe biologically based mental illnesses by prohibiting unequal restrictions on annual and lifetime mental health benefits, inpatient hospital days and outpatient visits, and out-of-pocket expenses. This act would build on the Mental Health Parity Act of 1996, which was a good start but had severe limitations, including caps on the number of hospital days and outpatient visits allowed. Contact your U.S. senators to let them know of your support of this act.
Also on the national level, is the recently introduced Mental Health Juvenile Justice Act co-sponsored by Senators Wellstone, Kennedy and Landrieu. This act is designed to address the treatment needs of juveniles with severe mental illnesses and/or substance abuse disorders who come into contact with juvenile justice systems. Part one authorizes grants for partnerships between state and local juvenile justice agencies and local mental health authorities to establish treatment programs that address the service needs of these juveniles. Part two authorizes grants to create systems for intensive community services to prevent high-risk juveniles from coming into the juvenile justice system and to meet the mental health needs of youth on probation. Part three authorizes the awarding of grants and contracts to establish four research and training centers to provide training, conduct research and provide technical assistance on juvenile justice and mental health issues.
RELATED SUPPORT GROUPS
OCD Support Groups
Contact: Phil Greengus (206) 322-3621
Date & Time: Every Saturday, 10am - 12pm
Location: Swedish Medical Center
747 Broadway, Seattle
Conference room on level B across from cafeteria.
A friends and family support group meets in the same location at
the same time on the first Saturday of the month. They meet with
those who have OCD for a time and then break into a separate meeting.
Contact: Debbie Meisel (206) 298-9626
Date & Time: 3rd Wednesday of each month, 6:30-8pm
Location: Seattle Children's Home
2142 10th Ave W, Seattle
Support Group for Parents of Children on the PDD/Autism Continuum
Contact: Rena Schoenfeld (206) 326-3886
Date & Time: 1st Tuesday of each month, 6-8pm
Location: Central Group Health Coop
Central South Bldg.
125 16th Ave E, Seattle
East Room A6 (downstairs next to cafeteria)
CHADD Support Groups
There are a number of CHADD branches throughout the state. Call Barb
Orchard-Carr of the Northwest CHADD Chapter at (253) 850-2133 for a
location nearest you. Check out our chapter website for updated
listings of CHADD lectures of interest.
DEAR ERIN
Question:Sometimes I wonder about what's going to happen when I grow up. I'd like to get married and maybe even have a family, but I'm afraid my kids might get TS too. Do you think it's ok to have kids when you know you might be passing on a disorder like TS?Answer:
Yes, you will love your kids no matter what, and maybe they won't end up having TS. Also, maybe by the time you have children there will be a cure for TS, or at least new medicines to help.Question:
My handwriting is really bad. No matter how hard I try, I can't seem to make it much better. Do you think I should forget trying to write and just use a computer for everything? I'm in third grade.Answer:
No, as you get older your handwriting will improve. Keep practicing and it will get better. But using a computer for some things wouldn't be a bad idea either.Erin is a high school junior. She welcomes any questions from kids. Send them to the editor.
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