CONNECTIONS

Newsletter of the Washington State Chapter of the Tourette Syndrome Association

Volume X, Issue 2June, 2003


Save These Dates!


Plans are underway for a summer picnic, August 23 at Golden Gardens Park in Seattle. More information will be coming out in a flyer as summer approaches. Also be watching in September for information regarding our 4th bowl-a-thon fundraiser. This year we are hoping to have fun bowling in Seattle and Spokane. This chapter fundraiser is tentatively scheduled for October.

Raising Awareness in Our State

Board member Bill Zook represented our chapter at the annual resource fair sponsored by the Seattle Special Education Advisory and Advocacy Council (SEACC) in March. This fair is to help parents of special ed children in the Seattle School District get access to the resources that are available to help them. He handed out brochures and answered questions from parents and educators alike.
Chapter member Lex Meyers has been assisting board co-president Roseanne Torgerson at YADA presentations. YADA stands for Youth Awareness of Disability Assemblies. We have partnered with other disability organizations to try to raise the awareness of students with disabilities in the Seattle School District. We could always use more volunteers for this effort. See the Volunteer Corner on page 2.
Chapter member, Roger Sasnett, made a presentation on TS to the Central Region of Washington State Association of School Psychologists in Yakima on May 21. The presentation focused on instructing participants in the symptoms, etiology, epidemiology, prognosis, and treatment of TS, along with suggestions for classroom modifications for children with this disorder. The objective of the presentation was to help school psychologists and teachers gain the ability to identify TS when it presents among students in the schools. Roger had previously sent out surveys to educators assessing their knowledge of TS. A typical response was "I've never worked with a child with TS." Based on the most recent literature, chances are they have, but weren't aware of the signs and symptoms. Teachers and school psychologists are on the "front lines," and are in a position to be the first to notice the onset of TS. Given the frequency of comorbid conditions that are also problematic for children in the school setting (ADHD, OCD, Learning Disorder, anxiety disorders, Conduct Disorder, etc.), it is imperative that these educators be knowledgeable about the symptoms of TS so as to refer children afflicted with this condition for a medical evaluation, and to make appropriate classroom accommodations for their unique educational needs. Roger was assisted by another chapter member, Rhonda Palmquist, in his presentation. Board member Carroll Frye also participated by being part of a panel discussion with them. Thank you all for helping to raise awareness in these ways!


Presidents' Corner

By Bernadette Witty

Hello everyone! At the time of writing this we are coming up to the annual Tourette Syndrome awareness month in May. For both this year and last, we have counted our participation in YADA (Youth Awareness of Disabilities Assemblies) as our awareness program. As you would have read in previous newsletters, YADA is an excellent program that promotes awareness of a range of disabilities targeted at school aged children through the use of informative and interactive booths and activities. Although we have had presence at every YADA school event, we have yet to hold an actual booth on Tourette Syndrome and for that I actively ask your assistance. For a two day event, the chance to create awareness and promote a deeper understanding of Tourette Syndrome to multiple age groups as well as teachers, is one too good to miss. It is also a fun day as you get to see and experience the impacts of other disabilities as well as network with some great people and organizations. Check out our Volunteer Corner for more details and how you can get involved.
Another great project underway is the "You've Got a Friend" program. This is actually a study, spearheaded by the Washington DC chapter. It is also an awareness program and has some pretty neat tools and resources that very effectively communicate the aspects and implications of Tourette Syndrome. I am so excited that our chapter is participating in both of these programs and look forward to many volunteers coming forward to make them a success.
We are in the midst of trying to organize a medical conference for May 2004. However there are many planning steps that need to be completed before we can make this a reality. Again I plead for your help on this. This is exciting as it will be our first medical conference to offer Category I continuing education credits for physicians, and so we are hoping we draw a great crowd. But again, it won't happen without some help, so please check out our Volunteer Corner.
So enough of the volunteer pleading (begging)! I am excited about what our chapter can achieve and after only a few short years on the board and exposure to people who have done amazing things for the promotion of awareness, education and plain old love and support, I hope we can continue to measure up.
I hope everyone has a great summer and takes the chance to relax, enjoy the sunshine and the great outdoors. I will be trying to put together another end of summer picnic as everyone, especially the kids, seemed to enjoy it so much last year. We will send out email and flyer invitations.
Once again I encourage anyone to call me to give your ideas, suggestions, offer of help (had to put that one in), or even just a chat!


Chapter News

You've Got a Friend

Our chapter is continuing to support the You've Got a Friend program. To recap, it is a school awareness program that involves a video-based presentation with follow-up workshop and activities, developed for children ages 7-12 to educate the classmates of a child with TS.
First, we would like to thank Jan Clogston for volunteering to be the coordinator for this program for our chapter. Thank you Jan! We have had a few families come forward but we need more.
Specifically we need children between the ages of 7-12 to participate in the study. Right now the effectiveness of the program is being measured in order to help justify the use and importance of such educational programs in schools nationally.
We have sent out 250 postcards to our chapter members throughout the Seattle area describing the program and asking for participants. So if you have received such a postcard, please give us a call. Even if you didn't receive a postcard, but are reading this and are interested, then please call Jan at (360) 805-1935.

Partnership with Washington State Special Education Coalition

Our state chapter is seeking to partner with the Washington State Special Education Coalition (WSSEC) to provide the best representation for our organization in Washington state government. WSSEC is a coalition of many organizations. It was formed in 1977 to bring parent and professional organizations together in a spirit of cooperation to share information, explore issues and effectively advocate for quality education for all children, particularly those with special needs in Washington State. Its guiding principles are: The organization's goals for 2002-2003 are: You can learn more about WSSEC at their website www.wssec.org. We are in need of a volunteer to serve as a liaison to the WSSEC. See the Volunteer Corner for more information.

Athletes for Kids Mentors

The March 29 issue of the Seattle Times devoted a long article to a program we reported on in our December 2001 and June 2002 issues of Connections. The Athletes for Kids program, which pairs high school athletes with elementary aged kids with disabilities, was started by chapter member Ken Moscaret after successfully pairing up his son with TS to an athlete mentor. It is now a nonprofit group with 15 athletes from Skyline High School in Sammamish. Plans are to expand the program to other high schools in that district. For more information, visit www.athletesforkids.org, email info@athletesforkids.org or call (425) 369-2142.

Volunteer Corner

You've Got a Friend Presenters - Volunteers all over the state are needed to deliver an educational video presentation about TS to kids in the classroom. The presentation kit is comprehensive making it very easy to deliver. It is an excellent opportunity to expand awareness and improve understanding of Tourette Syndrome for both children and teachers. See article above. Contact Bernadette Witty.

Conference Planner - Help organize our medical conference tentatively scheduled for May 2004. You could volunteer for one or more of the following: making contact calls with speakers, liaison with the conference facility, making name tags, ordering food, writing up the brochure, handling registration, and helping on the day. Contact Bernadette Witty.

Physician Referral Coordinator - We need someone to take over the management of our chapter's Physician Referral list. We all know what a crucial resource this is not only for the newly diagnosed but for ongoing treatment and support, and our current chapter list needs a lot of work. Responsibilities would include working with the national TSA to make corrections to our current list and researching and facilitating the process for new additions. Contact Bernadette Witty.

Chapter Liaison to Washington State Special Education Coalition (WSSEC) - Washington TSA needs a volunteer to serve as our liaison to WSSEC. This will require attending a Saturday morning board meeting 4-5 times a year in Federal Way. See article above for more information. Contact Bernadette Witty or Roseanne Torgerson.

YADA Days - We are part of an excellent program called Youth Awareness of Disability Assemblies that involves creating awareness of a wide variety of disabilities, including TS, among children in elementary schools throughout Seattle. We need volunteers to help work at activity booths that have been set up to talk about other types of disabilities, and we also need someone with ideas on how we could set up a booth dealing specifically with TS. Upcoming YADA program days are: September 25 & 26 at Ridgecrest Elementary and October 24 & 25 at Syre Elementary, both in Shoreline. Volunteers can work for all or part of the two-day event. Contact Roseanne Torgerson.


Contact information for Roseanne Torgerson: (206) 322-4754, rtorgerson@cortland.com
Contact information for Bernadette Witty: (206) 780-5361, Bernadette@thewittyfamily.com


MEDICAL NEWS

"Tic" of the Iceberg: Medication and Other Treatment Options Warming Globally for People with Tourette's Disorder

by Samuel H. Zinner, M.D.

Editor's Note: Dr. Zinner will be starting an ongoing "Ask the Doctor" column in our newsletter. He invites you to submit questions on all aspects of TS and comorbid conditions. Please submit your question by email to TSAWASH@aol.com or in writing to Editor, Connections, 11316 20th Ave. NE, Seattle 98125.

Once considered an extremely rare disorder witnessed by a medical professional perhaps once in a lifetime, Tourette Syndrome (TS) is now recognized as a relatively common condition with a very wide range of manifestations. In fact, some children, adolescents and adults with TS themselves are unaware that they have a tic disorder at all! While having very mild tics may explain this oversight for some, other explanations may include misconceptions regarding tics and TS.
A very common misconception about TS, both for professionals and for the lay community, is that all people affected with this disorder blurt out obscene language uncontrollably. Other common misconceptions are that tics must be very severe, non-suppressible, and troubling.
Perhaps most important, many people are unaware that the noises and movements we call "tics," often, are just the "tic of the iceberg;" people with TS commonly experience a variety of "comorbid" problems that can be very severe, and much more troubling or disabling, than tics.
In the following discussion of medication treatment options for people with TS, I'll guide you through a series of questions that, in my experience, are often on the minds of families, professionals, and others who are touched by TS.

Are "mental" medications new?
Psychopharmacology, or the study and use of drugs to influence psychological functions and mental states, enjoys a very long and colorful past. From the days of classical Roman and Greek antiquity, substances such as opium, cannabis and alcohol have been used medicinally. During the Middle Ages, the coffee bean was chewed for its stimulant medicinal effect, and was available only from Ethiopia. (Luckily, Arabians later invented coffee roasting, making the consumption of caffeine pleasant and widely available to Seattlites and others alike). However, it was not until the 1500s, in Europe, that "psychoactive" drug use became widespread, with many new and tested options explored (including contemporary favorites like tobacco, kola, and cocoa).
Psychostimulants, like amphetamines and methylphenidate, are now commonly prescribed for the young and the less-young for a variety of ailments, including impulsivity, inattention and distractibility, hyperactivity, narcolepsy and depression.
Cocaine, too, is a psychostimulant, although with different chemical properties than those of the amphetamines (such as Dexedrine and Adderall) and methylphenidate (such as Ritalin and Concerta). During the early 20th century, cocaine was consumed leisurely by children and adults alike in their favorite American beverage, Coca-Cola, from which the name "Coca" derives.
It was during this same period in the United States and in Great Britain that drinking coffee was considered a medical addiction, as dangerous as morphine or alcohol, so instead, doctors were suggesting the use of opium as an alternative "reasonable aid in the work of life."
I present this somewhat lengthy and intriguing history for two reasons. First, psychoactive medications have been around for a long, long time, and for some drugs, there is a vast history to support its employability. Second, contemporary social standards often influence our perception of what is acceptable to use as a drug and what is not. It is important that decisions surrounding medication use be thoughtful, legal, healthy, agreeable to everyone involved (i.e., parents, guardians, patients and physicians) and guided by empirical data when available, and very importantly, these decisions should be adherent to the "Above All Do No Harm" standards mandated in the Hippocratic Oath.
In very recent years, there has been an explosion in the number of psychoactive medications available for people with TS and comorbid conditions. None of these drugs has been designed with TS in mind; however, there are many potential uses of these medications that may be a tremendous support for people with TS.

Does my child NEED medication?
I seldom recommend any medication as a first-line approach for any medical psychosocial treatment plan. While many medications have been shown to be of great benefit to some people with TS for some of the problems they experience, there is no "One Size Fits All" approach to treatment strategies, medication or otherwise, in managing the difficulties posed by TS.
In my experience of working with families affected by Attention Deficit Hyperactivity Disorder (ADHD), I hear many parents voice concerns regarding turning their child "into a zombie" or a "drug addict." In response to these concerns, I often provide these parents with bad news and good news. The "bad" news is that, for most medications that have a brain-targeted effect ("psychotropic"), we do not understand precisely how, or where in the brain, the medication is working. The "good" news is that we see that these medications do work in ways that we want them to work.
It's often helpful to use an analogy of glasses and vision to understand why the use of psychoactive medications might be considered. Children with very poor eyesight are not likely going to have an easy time learning to read. However, if an eye doctor evaluates the child and provides an appropriate corrective lens prescription, the child will be at par with her peers in her ability to see. From this point, the child will need to learn to read the same as everyone else in her class. The glasses will not teach her to read, but will allow her brain to perceive the visual letters so that she can learn to read.
Medications for ADHD do not teach children to become organized, or to think analytically, or to know to say "please" and "thank you," and that it's rude to interrupt others who are speaking. However, without the use of medication, many children with ADHD will not readily or consistently "see" their own behaviors and disorganization. Medication, in theory, balances the chemicals in the brain that are making life such a challenge for these kids, so that the chemicals are in the same balance as that of their peers who are not afflicted with ADHD. I want to emphasize that this explanation is an oversimplification, but it's on the right track of understanding what's going on!!

Are there options other than medications to help people with Tourette Syndrome?
Yes. Emphatically YES. If a child is challenged with the tics of TS or with any comorbid problems, it is essential that she undergo a complete "psycho-educational" evaluation; such an evaluation will help parents, school teachers and administrators, health providers and the child understand the scope of the difficulties posed. A thorough psycho-educational evaluation may include some combination of assessment of cognitive ability or "intelligence," academic or "achievement" proficiency, gross and fine motor skills, psycho-social profile and self-esteem, speech and language, and other components.
Psycho-educational assessment is available without cost through every public school district in the United States (and children who attend private schools are eligible through their local public school district). It can sometimes be a challenge to determine that a child is eligible to undergo the assessment which is time-consuming and expensive, and that these assessments may or may not uncover underlying difficulties that challenge the child.
In addition, there are professionals outside the school-based system who are trained in evaluating children and adults with TS and related problems. These professionals can provide similar, and dissimilar, evaluations and services to those provided through school districts. Professionals may include neurologists, psychiatrists, psychologists, developmental and behavioral pediatricians, social workers, education specialists, physical and occupational therapists,
If a child is determined to have a specific disability or difficulty, accommodations should be made for an appropriate educational program and milieu.
In addition to psycho-educational assessments, there are many other services (proven and otherwise) available to families, children and others affected by TS. Mention is made (below) of complementary and alternative considerations. I must emphasize that no treatment approach is adequate without careful consideration of the psychological impact to those with a disability. Treatment MUST include psychosocial support a topic for another time.

If you prescribe medications, aren't you just DRUGGING my child?
If comprehensive and qualified medical, psychosocial and educational assessments have been performed, and a treatment strategy developed that addresses each of these components, then consideration of the use of psychoactive medication may be appropriate. If we fail to first undergo the mentioned assessments, and then to follow with educational, behavioral, and supportive strategies to address the challenges, then we are at risk of "just drugging" the child.
Some children thrive once "drugged," yet for others, there is a dangerous risk of overlooking underlying challenges that may be the true sources of the child's difficulties. In these circumstances, not only are we likely to fail to help the child or adult, we may also be causing significant harm in using medication.

What's the BEST medication for my child with Tourette Syndrome?
This is a very important question to ask, and an even better one to dodge! I say this tongue-in-cheek, because the question cannot really be answered at least, not until further questions are raised.When prescribing psychoactive medication, an important question professionals and parents maybe forget to consider is, "What is it that we're trying to treat?"
Remembering that many, if not most, people with TS also have one or more comorbid conditions, we must first consider what is MOST interfering functionally. To a child and to an adolescent, the roles of "student," "family member" and "peer" are the most important. For an adult, the work environment typically supplants "student" as a primary role.
Although many people, professionals and laypersons alike, often assume that tics must be treated, the truth is that the majority of people with TS are less troubled by tics than by problems related to comorbid conditions. These problems may stem from "executive dysfunctions" inherent in ADHD and learning disabilities (e.g., disorganization, social skills awareness, impulsivity, or poor coordination), and from specific learning disabilities, poor self-esteem, depression, anxiety, obsessions and compulsive behaviors, and others.
Once it is agreed that a particular problem or problems is/are functionally impairing, and after evaluations and other non-medication strategies have been accomplished, then medications can be considered that address the primary problem. Remember that more often than not, the primary problem will not be tics.

How do you select the medications?
It's tricky! There are many options available for tics and for comorbid conditions. To make matters more difficult, what works well for one person may be ineffectual, unpleasant or even exacerbating to another person. As a result, the maxim "Start Low, Go Slow" is an excellent rule of thumb. In other words, select a problem, then consider medication options and once selected, prescribe at a low dose, increasing the dose slowly over time until a therapeutic effect is achiev-ed, or until it is decided that the medication is not working, or until a side effect is determined to be unacceptable.

Who should prescribe medications for a person with Tourette Syndrome?
If your primary care provider is well-versed in the range of options available to treat tics and/or comorbid conditions, then she may be the appropriate candidate to prescribe and manage medication. In general, however, most primary care providers do not feel that they have a medical background to allow them to manage psychotropic medications adequately. Consultation with a pediatric psychopharmacology specialist who is trained specifically in the management of Tourette Syndrome and comorbid conditions is optimal. Such specialists may be found primarily in the disciplines of psychiatry and neurology (pediatric and adolescent patients are best treated by pediatric and adolescent specialists within these fields), and in developmental and behavioral pediatrics. Some sub-specialists will prefer to manage medication independently, while others may prefer to work in consultation with a primary care provider.

What about naturopathic and other complementary and alternative options?
Little empirically-based, peer-reviewed data are available to qualify complementary and alternative options. There are mountains of anecdotal, but un-investigated, reports of the efficacy of some approaches, and regrettably little financial incentive or sources to inspire research in these areas. However, bit by bit, there is a growing body of research being conducted and published. There are potential dangers and advantages in considering these alternative approaches. Your best, and safest, bet is to refer to credible sources of information and licensed providers if you opt to explore these avenues of healthcare. Some websites available to assist you in making informed decisions include the National Center for Complementary and Alternative Medicine, which is a branch of the National Institutes of Health, at http://nccam.nih.gov; the Longwood Herbal Task Force at www.mcp.edu/herbal; and the National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM) at www.nccaom.org.

For further information regarding this topic, please contact the Tourette Syndrome Association, Inc. to obtain a newly published brochure, "A Consumer's Guide to Tourette Syndrome Medications", by Gerald Erenberg, M.D., or for reference information to a large number of other available resources.

Samuel H. Zinner, M.D. 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. Dr. Zinner joined the University of Washington faculty in January 2003, coming from Saint Louis University School of Medicine in Saint Louis, Missouri. Dr. Zinner is delighted to join the Washington state chapter of the Tourette Syndrome Association. He is a member of the Medical Advisory Board of the national Tourette Syndrome Association, Inc., and his research and clinical interests focus on TS and its comorbid conditions, learning differences, attention deficit disorders, elimination and sleep difficulties, and professional medical education.

OCD & ADHD Affect Quality of Life More Than TS

A study which was presented at the 55th Annual Meeting of the American Academy of Neurology, held in Honolulu March 29 - April 5 2003 states that the quality of life for those with Tourette Syndrome is strongly affected by obsessive-compulsive disorder and attention deficit hyperactivity disorder, but not tic severity. Forty patients with TS (average age of 10) were assessed with the Yale Global Tic Severity Scale, ADHD Rating Scale, and two scales for obsession. Quality of life was determined with the seven-part TNO-AZL Children's Quality of Life Scale, completed by the parents. The result was that no measure of quality of life was correlated with objectively determined tic severity. There were correlations between qualify of life and severity of scores on the tests used to measure ADHD and OCD, however. The authors concluded that though neurologists may be most comfortable in treating tics, to promote quality of life, neurological treatment must incorporate and even prioritize treatment strategies to abate comorbidities. Details may be found in Neurology 2003;60, P03.083, A211.

Study on the Use of Concerta

Concerta is an extended-release formulation of methylphenidate (Ritalin) for ADHD treatment that is designed to last through 12 hours, with just one morning dose. A study of children with ADHD who had previously responded to treatment with methylphenidate demonstrates that once-a-day Concerta (methylphenidate HCl) CII effectively controls ADHD symptoms and maintains a consistent safety profile over one year. The study, an interim analysis of one of the longest studies to date of continued use of a stimulant medication, indicates that children with ADHD are likely to continue to respond to Concerta for up to 12 months. The findings were published in the April 2003 issue of the Journal of the American Academy of Child & Adolescent Psychiatry. The study was designed to evaluate the effectiveness and tolerability of Concerta administered openly over a period of up to 24 months. It involved one of the largest samples of stimulant-treated ADHD children (407 children, ages 6 through 13) followed systematically for at least one year.
Investigators reported that Concerta did not adversely affect growth (weight and height); did not appear to induce or worsen tics; did not adversely affect vital signs (i.e., blood pressure, pulse); and had no clinically meaningful effect on a wide range of blood tests (i.e., red and white blood cell count, liver function tests). Additionally, despite its extended-release pharmacokinetic profile and long duration of action, Concerta apparently had little impact on parental perception of sleep quality. Although the study showed that Concerta did not induce or worsen tics (and in fact, past studies have also concluded that methylphenidate does not cause or worsen tics), the product literature that is packaged with the drug warns against prescribing it for patients that have tics or Tourette Syndrome, or a family history of Tourette Syndrome.

Summarized from PR Newswire Association article of 4/1/03.

Alternatives Therapies for ADHD

For those parents who are reluctant to use medication to treat their child with ADHD, there is an ADD/ADHD clinic at the Bastyr Clinic for Natural Health in Kenmore, WA. Each child receives a treatment plan customized to the child's own symptoms and needs that includes nutritional advice, lifestyle modifications and natural supplements. The clinic is open to all children who have symptoms of inattentiveness or hyperactivity, including those who have not been formally diagnosed, and those already taking medication. For more information, contact them at (206) 834-4101.

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


LEGISLATIVE UPDATE

by Jai Kelly

NATIONAL NEWS

It has been a rough three months since I last wrote. There is lots of bad news on the legislative and judicial fronts. First, Jeffrey Sutton was confirmed for a seat on the 6th U.S. Circuit Court of Appeals by the U.S. Senate. Speaking to disability rights advocates before the vote, Senator Tom Harkin, D, Iowa said, "I need you out there reminding every senator who you see...a vote for Jeffrey Sutton is a vote to undo the Americans with Disability Act." Unfortunately, not enough Senators felt as he did and Sutton's appointment has been approved.

IDEA

The House of Representatives has also been willing to compromise the right of children with disabilities to receive a free and appropriate public education. In April, they voted to approve H.R.1350, "Improving Education Results for Children with Disabilities Act." This bill contains a variety of amendments to IDEA which are harmful to children with disabilities. The National TSA is opposed to this bill. Its key concerns are:
  1. Three-year IEPs: The bill proposes a three-year rather than an annual IEP. While this is an optional choice for parents, many parents will either be confused by it or feel coerced to accept this option. We believe that an annual IEP is necessary to review the child's needs and make necessary modifications.
  2. Eliminating Short-Term Objectives by 2006: H.R. 1350 provides short-term objectives as part of the IEP until the 2005-2006 school year, although it permits short-term objectives to continue for students with the most severe disabilities. Short-term objectives provide parents with useful information about the student's progress on important academic and non-academic goals.
  3. Discipline Provisions: This bill would allow school district personnel to remove a student with TS from his/her current placement for the violation of any school rule so long as the same duration of dsicipline would apply to a student that did not have TS. This removal could take place even if the behavior was a manifestation of the child's TS. The bill would essentially punish a child with TS for behavior that he/she cannot control. All of this is evidenced by the removal of the requirements to develop positive behavior support plans.
  4. Procedural Safeguards: The bill will dramatically weaken the rights of students with disabilities to receive a free, appropriate public education and will do little to make schools safer and more conducive to learning.
  5. Mandatory Full Funding: The bill does not call for mandatory full funding of IDEA, but instead provides a track to reach "discretionary" full funding in seven years. When IDEA was first passed into law, the promise was to fund 40% of the costs. Currently the federal government only funds 17%.
Democrats and Republicans on the Senate Health Education Labor and Pensions Committee have been working for more than two years to put together a bipartisan bill on special education. This bill should be introduced sometime to the full Senate in late May. Washington Senator Patty Murray is a member of the committee working on this bill. In the past she has made some statements indicating that she may approve of the new discipline amendments. So, contact her to let her know about your views on this. If you have access to the Internet, a very useful source for information on IDEA is at: http://www.nichcy.org/reauth/goodman.htm
What these two issues highlight is that in this era of the challenging of longstanding rights, even the Democratic Party, which has generally been protective of the rights of those with disabilities, need to hear from you. We can't afford to allow ourselves and our children to continue to lose hard won rights any longer.

Health Care Legislation

According to the US General Accounting Office (GAO), Congress' investigative arm, in 2001, at least 12,700 families were forced to place their children in child welfare and juvenile justice systems so they could access needed mental health services. The Family Opportunity Act of 2003 would allow states to offer Medicaid to working families with a child, or children, with special health needs. Senators Grassley (IA) and Edward Kennedy (MA) reintroduced the Family Opportunity Act (S. 622) in the Senate. Representatives Sessions (TX) and Waxman (CA) reintroduced the Family Opportunity Act in the House. Under this legislation, affected families could buy into Medicaid on a sliding scale according to their income. Let your Senators and Representative know you support this bill.

Mental Health Parity

In February, congressional leaders introduced the Senator Paul Wellstone Mental Health Equitable Treatment Act of 2003 dedicated to the late senator, a tireless champion of insurance parity and other mental health legislation. The new parity bills, designated as S. 486 and H.R. 953, mirror the parity legislation in the previous Congress.
Telephone your legislators and let them know you support these bills. The Parity Hotline is 1-866-parity4. This toll-free number reaches the Capitol switchboard, which will connect callers to their members of the Senate and House.

Mental Health & Native Americans

This year there will be a symposium at NAMI's Annual Convention concerning the quality of health care available to American Indians. The symposium will explore the importance of quality mental healthcare services for American Indians and other Native Americans, as well as provide opportunities for American Indian community members and NAMI members to join together to address the most pressing mental healthcare concerns of American Indian family members and consumers.
Kudos to them for spotlighting an area of mental health care often overlooked by other groups.

SCHOOL NEWS

Students with Disabilities Preparing for Postsecondary Education: Know Your Rights and Responsibilities

Editor's Note: If your child is graduating this year from high school and plans to continue his/her education, here's an informative article about what you both should know.

More and more high school students with disabilities are planning to continue their education in postsecondary schools, including vocational and career schools, two- and four-year colleges, and universities. As a student with a disability, you need to be well informed about your rights and responsibilities as well as the responsibilities that postsecondary schools have toward you. Being well informed will help ensure that you have a full opportunity to enjoy the benefits of the postsecondary education experience without confusion or delay.
The Office for Civil Rights (OCR) in the U.S. Department of Education is providing this to explain the rights and responsibilities of students with disabilities who are preparing to attend postsecondary schools. It also explains the obligations of a postsecondary school to provide academic adjustments, including auxiliary aids and services, to ensure that the school does not discriminate on the basis of disability.
OCR enforces Section 504 of the Rehabilitation Act of 1973 (Section 504) and Title II of the Americans with Disabilities Act of 1990 (Title II), which prohibit discrimination on the basis of disability. Practically every school district and postsecondary school in the United States is subject to one or both of these laws, which have similar requirements.
Because both school districts and postsecondary schools must comply with these same laws, you and your parents might believe that postsecondary schools and school districts have the same responsibilities. This is not true; the responsibilities of postsecondary schools are significantly different from those of school districts.
Moreover, you will have responsibilities as a postsecond-ary student that you do not have as a high school student. OCR strongly encourages you to know your responsibilities and those of postsecondary schools under Section 504 and Title II. Doing so will improve your opportunity to succeed as you enter postsecondary education.
The following questions and answers provide more specific information to help you succeed.

As a student with a disability leaving high school and entering postsecondary education, will I see differences in my rights and how they are addressed?
Yes. Section 504 and Title II protect elementary, secondary and postsecondary students from discrimination. Nevertheless, several of the requirements that apply through high school are different from the requirements that apply beyond high school. For instance, Section 504 requires a school district to provide a free appropriate public education (FAPE) to each child with a disability in the district's jurisdiction. Whatever the disability, a school district must identify an individual's education needs and provide any regular or special education and related aids and services necessary to meet those needs as well as it is meeting the needs of students without disabilities.
Unlike your high school, your postsecondary school is not required to provide FAPE. Rather, your postsecondary school is required to provide appropriate academic adjustments as necessary to ensure that it does not discriminate on the basis of disability. In addition, if your postsecondary school provides housing to nondisabled students, it must provide comparable, convenient and accessible housing to students with disabilities at the same cost.
Other important differences you need to know, even before you arrive at your postsecondary school, are addressed in the remaining questions.

May a postsecondary school deny my admission because I have a disability?
No. If you meet the essential requirements for admission, a postsecondary school may not deny your admission simply because you have a disability.

Do I have to inform a postsecondary school that I have a disability?
No. However, if you want the school to provide an academic adjustment, you must identify yourself as having a disability. Likewise, you should let the school know about your disability if you want to ensure that you are assigned to accessible facilities. In any event, your disclosure of a disability is always voluntary.

What academic adjustments must a postsecondary school provide?
The appropriate academic adjustment must be determined based on your disability and individual needs. Academic adjustments include modifications to academic requirements and auxiliary aids and services, for example, arranging for priority registration; reducing a course load; substituting one course for another; providing notetakers, recording devices, sign language interpreters, extended time for testing and, if telephones are provided in dorm rooms, a TTY in your dorm room; and equipping school computers with screen-reading, voice recognition or other adaptive software or hardware.
In providing an academic adjustment, your postsecondary school is not required to lower or effect substantial modifications to essential requirements. For example, although your school may be required to provide extended testing time, it is not required to change the substantive content of the test. In addition, your postsecondary school does not have to make modifications that would fundamentally alter the nature of a service, program or activity or would result in undue financial or administrative burdens. Finally, your postsecondary school does not have to provide personal attendants, individually prescribed devices, readers for personal use or study, or other devices or services of a personal nature, such as tutoring and typing.

If I want an academic adjustment, what must I do?
You must inform the school that you have a disability and need an academic adjustment. Unlike your school district, your postsecondary school is not required to identify you as having a disability or assess your needs.
Your postsecondary school may require you to follow reasonable procedures to request an academic adjustment. You are responsible for knowing and following these procedures. Postsecondary schools usually include, in their publications providing general information, information on the procedures and contacts for requesting an academic adjustment. Such publications include recruitment materials, catalogs and student handbooks, and are often available on school Web sites. Many schools also have staff whose purpose is to assist students with disabilities. If you are unable to locate the procedures, ask a school official, such as an admissions officer or counselor.

When should I request an academic adjustment?
Although you may request an academic adjustment from your postsecondary school at any time, you should request it as early as possible. Some academic adjustments may take more time to provide than others. You should follow your school's procedures to ensure that your school has enough time to review your request and provide an appropriate academic adjustment.

Do I have to prove that I have a disability to obtain an academic adjustment?
Generally, yes. Your school probably will require you to provide documentation that shows you have a current disability and need an academic adjustment.

What documentation should I provide?
Schools may set reasonable standards for documentation. Some schools require more documentation than others. They may require you to provide documentation prepared by an appropriate professional, such as a medical doctor, psychologist or other qualified diagnostician. The required documentation may include one or more of the following: a diagnosis of your current disability; the date of the diagnosis; how the diagnosis was reached; the credentials of the professional; how your disability affects a major life activity; and how the disability affects your academic performance. The documentation should provide enough information for you and your school to decide what is an appropriate academic adjustment.
Although an Individualized Education Program (IEP) or Section 504 plan, if you have one, may help identify services that have been effective for you, it generally is not sufficient documentation. This is because postsecondary education presents different demands than high school education, and what you need to meet these new demands may be different. Also in some cases, the nature of a disability may change.
If the documentation that you have does not meet the postsecondary school's requirements, a school official must tell you in a timely manner what additional documentation you need to provide. You may need a new evaluation in order to provide the required documentation.

Who has to pay for a new evaluation?
Neither your high school nor your postsecondary school is required to conduct or pay for a new evaluation to document your disability and need for an academic adjustment. This may mean that you have to pay or find funding to pay an appropriate professional to do it. If you are eligible for services through your state vocational rehabilitation agency, you may qualify for an evaluation at no cost to you. You may locate your state vocational rehabilitation agency through this Department of Education Web page: http://www.ed.gov/offices/OSERS/RSA/Resources/State/.

Once the school has received the necessary documentation from me, what should I expect?
The school will review your request in light of the essential requirements for the relevant program to help determine an appropriate academic adjustment. It is important to remember that the school is not required to lower or waive essential requirements. If you have requested a specific academic adjustment, the school may offer that academic adjustment or an alternative one if the alternative also would be effective. The school may also conduct its own evaluation of your disability and needs at its own expense.You should expect your school to work with you in an interactive process to identify an appropriate academic adjustment. Unlike the experience you may have had in high school, however, do not expect your postsecondary school to invite your parents to participate in the process or to develop an IEP for you.

What if the academic adjustment we identified is not working?
Let the school know as soon as you become aware that the results are not what you expected. It may be too late to correct the problem if you wait until the course or activity is completed. You and your school should work together to resolve the problem.

May a postsecondary school charge me for providing an academic adjustment?
No. Furthermore, it may not charge students with disabilities more for participating in its programs or activities than it charges students who do not have disabilities.

What can I do if I believe the school is discriminating against me?
Practically every postsecondary school must have a person frequently called the Section 504 Coordinator, ADA Coordinator, or Disability Services Coordinator who coordinates the school's compliance with Section 504 or Title II or both laws. You may contact this person for information about how to address your concerns. The school also must have grievance procedures. These procedures are not the same as the due process procedures with which you may be familiar from high school. However, the postsecondary school's grievance procedures must include steps to ensure that you may raise your concerns fully and fairly and must provide for the prompt and equitable resolution of complaints.
School publications, such as student handbooks and catalogs, usually describe the steps you must take to start the grievance process. Often, schools have both formal and informal processes. If you decide to use a grievance process, you should be prepared to present all the reasons that support your request.
If you are dissatisfied with the outcome from using the school's grievance procedures or you wish to pursue an alternative to using the grievance procedures, you may file a complaint against the school with OCR or in a court. You may learn more about the OCR complaint process from the brochure How to File a Discrimination Complaint with the Office for Civil Rights, which you may obtain by contacting us at the addresses and phone numbers below, or at http://www.ed.gov/ocr/docs/howto.html.
If you would like more information about the responsibilities of postsecondary schools to students with disabilities, read the OCR brochure Auxiliary Aids and Services for Postsecondary Students with Disabilities: Higher Education's Obligations Under Section 504 and Title II of the ADA. You may obtain a copy by contacting us at the address and phone numbers below, or at http://www.ed.gov/ocr/docs/auxaids.html.
Students with disabilities who know their rights and responsibilities are much better equipped to succeed in post-secondary school. We encourage you to work with the staff at your school because they, too, want you to succeed. Seek the support of family, friends and fellow students, including those with disabilities. Know your talents and capitalize on them, and believe in yourself as you embrace new challenges in your education.
To receive more information about the civil rights of students with disabilities in education institutions, contact us at:


Customer Service Team
Office for Civil Rights
U.S. Department of Education
Washington, D.C. 20202-1100
Phone: 1-800-421-3481
TDD: 1- 877-521-2172
Email: ocr@ed.govInternet home page: http://www.ed.gov/ocr
You may be familiar with another federal law that applies to the education of students with disabilitiesthe Individuals with Disabilities Education Act (IDEA). That law is administered by the Office of Special Education Programs in the Office of Special Education and Rehabilitative Services in the U.S. Department of Education. The IDEA and its Individualized Education Program (IEP) provisions do not apply to postsecondary schools. This pamphlet does not discuss the IDEA or state and local laws that may apply.
U.S. Department of Education, Office for Civil Rights, Students with Disabilities Preparing for Postsecondary Education: Know Your Rights and Responsibilities, Washington, D.C., 2002.

OTHER RESOURCES

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 their chapter website for updated listings of CHADD lectures of interest at www.nw/chadd.org.

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
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, fishmama@qwest.net for more information.


UPCOMING PROGRAMS

ADHD Conference

Title: ADHD Through the Lifespan Date & Time:9/27-28/03, 8:30am-4:30pm Location: Foster High School, Tukwila Cost: $75-$150 Contact: ADD Resources, 253-759-5085, addresources@nventure.com Description:Fourteen breakouts sessions will be give by top local authorities on a range of topics of interest to parents of ADHD children and teenagers, adults with ADHD and their spouses, school teachers, nurses, physicians, social workers, psychologists, marriage and family therapists, and graduate students. Master classes for ADHD clinicians will be given by Dr. Daniel Amen and Sam Goldstein, PhD.

Employment Conference

Title: The Employment Conference in Ellensburg Date & Time:6/25-27/03, all day Location: Central Washington University, Ellensburg Cost: $155-220 Contact: Washington Initiative for Supported Employment, (206) 343-0881, ext 115 Description:Workshop sessions are targeted at both employers and people with disabilities. The emphasis is on both getting a job and keeping it, including how to ask for accommodations.

Children with Emotional/Behavioral Difficulties

Title: Creating Safe Schools and Communities for At-Risk Children and Youth Date & Time:8/7-9/03, all day Location: Seattle Pacific University, Seattle Cost: $280 Contact: Washington Re-Education Association (WAREA) (206) 230-5292, info@warea.org Description:This conference is meant for educators to increase their skills in providing effective and safe interventions for children with emotional and/or behavioral disabilities. Encourage your child's teachers to attend!



Return to TSA - Washington State Chapter Home Page