CONNECTIONS

Newsletter of the Washington State Chapter of the Tourette Syndrome Association

Volume VII, Issue 4December, 2000

Informational Packets Sent to School Districts Throughout the State

Our chapter is extremely fortunate to be the recipient of a Schiff Foundations grant for the second year in a row. This grant will enable us to continue the project we initiated last year of sending out informational packets on TS to school districts across the state. Last year we sent 30 packets to smaller districts mostly in eastern Washington which our records indicated probably had TS students enrolled. This year our strategy is to target the largest school districts (most of them in western Washington) along with a select number of small and medium sized districts which again our records indicate probably have TS students enrolled. The districts chosen this year are:

Aberdeen #5          Anacortes #103       Arlington #016       Auburn #408          Bainbridge Island #303                    Bellevue #405        Bellingham #501      Bethel #403          Blaine #503          Cascade #228         Clover Park #400     Edmonds #15          Enumclaw #216        Everett #2           Evergreen #114       Federal Way #210     Ferndale #502        Franklin Pierce #402 Highline #401        Hood Canal #404      Issaquah #411        Kennewick #17        Kent #415            Lake Stevens #4      Lake Washington #414 Lakewood #306        Longview #122        Marysville #25       Mercer Island #400   Mount Baker #507     Mount Pleasant #29   Mount Vernon #320    Mukilteo #6          North Kitsap #400    Northshore #417      Oak Harbor #201      Pasco #1             Port Angeles #121    Port Townsend #50    Puyallup #3          Renton #403          Richland #400        Ridgefield #122      Riverview #407       Seattle #1           Sequim #323          Shelton #309         Shoreline #412       Snohomish #201       Snoqualmie Valley #410                    Stanwood #401        Star #504            Tacoma #10           Tahoma #409          Tukwila #406         University Place #83 Vancouver #37        Vashon Island #402   Washougal #112       Wishkah Valley #117

Packets were sent out in late October. Follow-up phone calls to the districts are currently taking place to ensure that the packets are disseminated to the appropriate school personnel. Our chapter thanks Kim Gorman and her children for volunteering to compile the packets and send them out. We are also grateful to Kim and Judy Swain for the follow-up phone calls. If your child is enrolled in one of the school districts listed, call the special education department and express your interest in making sure these packets are used to help your child and all TS children in the district gain success in school.


TSA National Conference 2000: Making Connections

by Roseanne Torgerson, Chapter President

This year's national conference was held November 3-5 in Alexandria, Virginia. The first day had three tracks: adult, education and family. Tracks for the second day were: advocacy, medical and parenting. Attendees were free to cross tracks to accommodate individual interests and needs and, of course, there were several combined general sessions. On the final day, conference participants got to choose from eight panel/Q&A sessions.

Compared with some other states, Washington had a small contingency of attendees, but we had a wonderfully balanced curriculum. My focus areas were education and advocacy. Deb Smith., leader of our Federal Way support group, represented us at the medical sessions. Jason Turner, a new member of our chapter, attended the newly-diagnosed sessions. His first connection with our chapter occurred at the conference. Many attendees from other state chapters made a point of telling me how much they liked our web site. If you haven't yet checked it out, do so now. The content changes periodically.

In terms of the tremendous amount of information presented at the conference, my brain has a lot of processing to do. Prior to the actual conference, I'd attended the Presidents' Training Program on November 1st and Leadership Training on the 2nd. My circuits are in overload! I have a great deal of informational material that can be shared via this newsletter, our meetings, or our lending library. Most of it is information that can be used.

A particular high point of my own conference experience included the keynote address by Judy Heumann, assistant U.S. Secretary of Education (since 1993) for the Office of Special Education and Rehabilitative Services. A pioneer of modern legislation, Ms. Heumann shared how the advocacy of her parents (she was denied the right to attend a public school until she was in fourth grade) nurtured, modeled and inspired her advocacy for herself. She successfully sued the Board of Education when the New York City school system refused to hire her as a teacher because she uses a wheel chair. She is a proclaimer of, and testament to, the empowering fact that the results of parent and self-advocacy efforts extend beyond one person, one battle, and one disability.

My sense was that tapes of the combined plenary presentation by Ross Greene, Ph.D., author of The Explosive Child, were the hottest seller at the conference. Dr. Greene assured us that the next edition of his book will include more for the "B basket" (you have to read the book to understand!), but he did not commit to a timeline. During the interim, the tapes of his presentation will become available through our chapter library system.

The keynote speech by Peter Hollenbeck, Ph.D., "My Personal Experience Living with TS," was informative, parent-affirming and inspiration. Dr. Hollenbeck, a neuro-biologist, is an associate professor of biological sciences at Purdue.

It was the "connecting" experience of the conference that, for me, was the most valuable, exciting and powerful. Conference attendees came not only from throughout the United States, but also from international locations including the Netherlands and Japan. We were all connected in our shared experiences of having TS as part of our lives. The most moving "connecting" experience for me was the articulate sharing by a mother and her 18 year old son. he came partly to be an "exhibit A" reminder that medications and the combinations of them can have very major side effects. He also came, along with his mother and his aunt (a nurse), to get "connected" with medical and research experts to a path toward help and hope.

I had recently borrowed Jean Conklin's book Music in the Midst of Chaos from our chapter library and was in the process of reading it when I left for Alexandria. While at the conference, I "connected" with Jean, her husband Dave and their daughter Trista (a chapter member of our state). Trista and Jean invited me to join them for Trista's presentation of a copy of the book to Jim Eisenreich. In the experience of reading the book, every reader is invited along to share the Conklin family's pains, struggles and successes on their journey toward understanding, coping and advocacy. But the book goes beyond being a the story of a family with a special needs child; it is also an easy-to-use guide and reference manual.

The conference was not all work. We were entertained and inspired by artists and performers who have TS. We saw a performance of the musical "Welcome to Tourettzville" by now-almost-8-year-old Jonathan Ospz (and his mom). Tim Piccirillo was very accurately billed as a motivational speaker, humorist and magician. Musician Michael Wolff stayed for autographing sessions following both the special showing of the film The Tic Code (inspired by his life) and his band's performance at the banquet.

TSA's national conference is held every two years. Start your planning now to attend the conference in 2002. I can guarantee you won't be the same after you've gone.


Volunteer Corner

We have the following opportunities for you to help support your chapter and the people in our state with TS. You can volunteer for all or part of these tasks.

Distribute our informational brochure to physician's offices - this would include targeting which physicians to mail to based on mailing lists of Washington physicians; packaging the brochures with a cover letter; addressing and mailing. This person should live in the greater Seattle area which is where our inventory of brochures is currently located.

Organize our annual bow-a-thon fundraiser - make arrangements with bowling allies; solicit prizes; publicize event; handle pre-registration; work at event. Some of these tasks should be done in the greater Seattle area. Others can be done in any part of the state.

We appreciate the response to our last request for volunteers. Robin Harkey is preparing the newsletter for mailing. Kim Gorman and Judy Swain sent out informational materials to 40 school districts and made follow-up calls to each district.


NEWS YOU CAN USE

Guide for IEP's
The U.S. Department of Education has announced a new guide for Individualized Education Programs (IEP's). The guide is intended to help parents, teachers and schools to develop IEP's that are in compliance with the Individuals with Disabilities Education Act (IDEA). The 35-page booklet helps parents and those developing the IEP's to understand the federal law and its regulations. It also helps them distinguish between IEP requirements under the federal law and additional requirements established under state or local policies and procedures. Free copies are available from the Department of Education by calling 1-877-4-ED-PUBS or by visiting their web site at www.ed.gov/pubs/edpubs.html.

Video Games & ADD
In the June 2000 issue of Connections, we reported on the use of biofeedback to help people with TS, OCD and ADD. Nasa scientists are currently studying this idea and researching the use of computer games and biofeedback to treat children with ADD. The treatment involves monitoring the brainwaves of children and trying to get them to modify brain activity that helps them concentrate. ADD children have a deficiency of high-frequency brainwave signals which has been implicated in reducing their attention span. Because normal biofeedback can be a long process with upwards of 40 sessions to produce improvements, the researchers are trying to make the experience more fun by using off-the-shelf computer games. The brainwaves of the children playing the games are monitored and used to calibrate the performance of the joystick used to play the game. When the children produce the right sort of brainwaves, the joysticks becomes more responsive, thus reinforcing the behavior. The lengthening of attention span and calming effect of playing the game persists long after the treatment is finished.

Computer Software
A new software program called Pocket Coach is now available in stores. This program, developed by AbleLink Technologies, runs on hand-help computers using the Windows CE operating system. It's purpose is to help people complete routine tasks which involve multiple steps. Although it was initially developed to help people with mental retardation, it is useful for anyone who has difficulty sequencing the steps involved in completing a task. Many people with TS have problems with executive functioning - the ability to organize thoughts and work through the sequential steps necessary to accomplish a task.

To use the software, the user touches the appropriate icon on the screen with a stylus whenever he needs to remember that routine. The computer then plays the voice of whoever programmed the instructions, reminding the user what to do next. For example, touching a sun icon would start a series of instructions for how to complete the user's morning routine before going off to school or work. The cost of Pocket Coach will be between $100 and $200.


MEDICAL NEWS

The Syndrome Described by Gilles de la Tourette, 1885

by Daniel Stowens, M.D.

Tourette's Syndrome is currently talked and written about as an easily recognized, clearly defined disorder afflicting thousands of people in the country. The definition of the syndrome is officially designated in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition, (DSM-IV). It could be assumed, then, that the problems in the brain that lead to the disorder are also clearly defined and well understood. In fact, that is not the case. Even the most basic aspects of the disorder are not known, and the apparent differences between people with the tics of the disorder are conveniently forgotten or ignored when general discussions and articles are produced. My goal for this article is to consider two different explanations for the genetic effects seen in Tourette's, and illustrate the effects on treating and thinking about the disorder that arise from those explanations.

Before starting, though, I must clarify a few things. Not all people with Tourette's have a genetic reason for the tics. It may be that more than half of the adults with Tourette's have a different "cause" for the tics than some faulty, abnormal gene. If looked for specifically, a large literature on Tourettism following encephalitis, strokes, head trauma, and drug treatment for a variety of psychiatric illnesses can easily be found. I am not going to write about the tics of those people here. I wish to consider the conditions in those people who do have a genetic reason for the syndrome, and will forget or ignore the others for now.

The most commonly held opinion about the genetics of Tourette's is that there is a gene or a small number of closely linked genes that are responsible for the disorder. Basically, the "classical approach" says that if you have inherited that gene then your chances of having Tourette's goes way up. If you are male, goes the theory, then you will probably have a tic that can be seen and a tic that can be heard - the official DSM-IV criteria for the diagnosis - by the time you're 12 years old. If you are female, you may not have the tic, but you will probably be obsessive-compulsive, and your kids will have a good chance of having Tourette's. If the gene is in the family not everyone who is carrying will show signs of the disorder -- it doesn't necessarily have high penetrance in the geneticists' words. And the effects of having inherited the gene may differ independently from the gender effects hinted at before. If the effects of the gene are really, really obvious, then you have a severe form of the disorder and will have "bad tics," major problems with attention, intense obsessions and compulsions, and be socially deficient. If you have a "mild form of the disorder," then the gene's effects are not so prominent and everything is less intense, less long-lasting, and less severe.

Although everyone agrees that this idea -- Tourette's (genetic form!) is controlled or produced by one gene -- is not proven, it is an attractive assumption for doctors to make. It is certainly much easier to explain to families than some combination of genetic effects that control different chemicals in the brain and produce a bewildering combination of behaviors and neurologic symptoms. Even though the gene has not been found, and all the fancy computer work on possible genes and combinations of genes has not even suggested that this genetic hypothesis is more likely than any other, some seductively reasonable extensions of the theory have been proposed. The gene may control the precise nature of one of the brain chemicals so that it makes certain brain cells more likely to be activated than if the gene were not there. The likely brain chemical is the dopamine receptor, and it is already known that there are lots of different forms of the dopamine receptor, there are lots of different genes involved in producing or controlling the dopamine receptor, and there are individual differences between one person's dopamine receptors and another's. So, if the gene produces the right kind of receptor, the brain cells that produce movements in response to dopamine are super-sensitive and can "fire off" when they are not supposed to, and a tic appears. Other brain cells, with the same dopamine receptor, are too sensitive also, and produce obsessions or compulsions. Other dopamine cells make a child move around too much, and make it hard to pay attention. And so on...

If we could find the gene, then we could figure out what was different in the dopamine receptor. Then we might be able to figure out what medicine, or other substance for that matter, could make the receptor act like normal receptors. The disorder would be cured, the drug companies would be richer, the scientists would win the Nobel Prize, and everyone would be happy. There is a great deal of work that is going on at this time aimed at all the scientific aspects of this theoretical approach to Tourette's. Some of the readers of this newsletter have, undoubtedly, taken part in research projects that are part of that work. And the science is good, valid work. Because our understanding of Tourette's is so fragmentary and so primitive, the results of the scientific studies haven't yet led to the medical applications that we are waiting for.

It is possible to make different assumptions about the genetics of Tourette's that lead to a slightly different approach to the disorder. What if Tourette's Syndrome were not really a syndrome at all? The dictionary definition of syndrome is: a group of symptoms that together are characteristic of a specific condition, disease, or the like. The symptoms of Tourette's are the tic, the attention problems, the obsessive-compulsive thinking -- at least that is what is commonly thought of when the phrase "Tourette's Syndrome" is heard. But if the manual for diagnosis is consulted -- DSM-IV, up there in the first paragraph -- Tourette's Syndrome isn't there. Tourette's Disorder is the heading of the section, and the criteria for having the disorder only include tics. So, everything about the genetics of Tourette's could be thought of as pertaining only to tics. Maybe obsessive-compulsive thinking, attention problems, social deficits, language or learning disorders are the consequences of different genes. Maybe the science would yield more useful results if the studies looked only at tics, or only at obsessions, or only attentional problems, etc. There would then not be one gene, or even a small, closely linked group of genes, but, rather a lot of different genes for all the different psychological and neurologic elements of any one person's personal profile. If that were the case, then inheriting something that made you obsessive-compulsive wouldn't necessarily imply that your children would have tics. And tics wouldn't necessarily mean that you were at high risk for attentional problems. And there would not be one medicine, one dietary supplement, one behavioral adaptation that would take care of all your problems. If the different parts of the "old Tourette's Syndrome" were really traits inherited through different genes, then the attention problems of a child with a tic could be thought of as the same as the attention problems of any other child. The anxieties and obsessions of a person with a tic would be the result of the same experiences and genes of an anxious, obsessive person without a tic. If all the different parts of Tourette's were independent of each other, then everything that has been discovered about Obsessive-Compulsive Disorder, about Attention Deficit Hyperactivity Disorder, about Pervasive Developmental Disorder could be used directly, rather than qualifying or limiting it by explaining everything as Tourette's.

To be completely honest in this article, I must point out that the two approaches -- conceptual viewpoints -- are not mutually exclusive. In fact, there are several ways that both could be correct. The easiest diplomacy is to point out that we already know that Tourette's -- Oliver Sacks calls it Tourettism -- is caused by a variety of different things, strokes, genetics, infections, trauma, etc. So, some people may have tics and obsessions because they have a special, genetically determined dopamine receptor; and other people may have tics and attention problems because they have lucked out and inherited two different genes, one for the tic and the other for the attention. Many people have Tourettism not through any genes at all, but because they had encephalitis, or because they have taken Thorazine(r) for a very long time.

Another way of blending the two approaches is to examine what it means to say that a gene controls a receptor. Maybe the simple words and manner I have used to describe the genetics is misleading. For example, dopamine receptors in everyone are really complicated molecules. They are made up of several different proteins that are assembled in a variety of combinations in different brain cells. Each different protein is controlled by a different gene, and, just to complicate life a little bit more, each protein is assembled out of pieces that the gene produces with the pieces going together in different patterns, too. So there are really a bunch of proteins coming from one gene in any one cell. And, of course, each gene can be a little bit different in each individual person. So, for example, the gene in one person may code for a protein made of a string of amino-acids that is different by only one amino-acid from the string in another person. The difference doesn't change the protein enough for us to think of it as a different chemical -- it's the same protein -- and the difference in the genes is not considered out of the ordinary in any way.

So the combination of protein pieces, and the combination of proteins that make up the different dopamine receptors are slightly different, normally, from person to person. Whether or not a particular brain cell makes and uses a specific dopamine receptor depends not only on which dopamine-receptor gene is present, but on a whole host of other genes as well. In the end, there could be a gene that controls something about dopamine receptors that had to be active if a person were going to have a tic. That gene might be so common that we could not find it by statistics or epidemiology or any of the other ways we have of finding disease genes. It would not be a disease gene at all, it would be a normal variant, that in combination with a bunch of other genes and a bunch of effects from experience made a tic possible. It is even theoretically possible that a gene like that could be an equally tiny part of obsessive-compulsive thinking, or attention span, or other neuro-psychological characteristic. If that were the case, then the first viewpoint could be correct -- there is one gene underlying a variety of symptoms -- but the influence of that gene would be hidden from science by the effects of so many other genes that the second viewpoint -- the different symptoms come from different genes -- was also true. Then we should treat everyone as if the different problems needed different therapies until we find that hidden gene and design the magic medicine for Tourette's.

The confusion that arises from thinking about Tourette's (or any of a whole host of other "disorders" in the DSM-IV) in two different ways can be very frustrating. If someone thinks that Tourette's comes from one gene, and that Tourette's itself is a combination of symptoms, then treating the tic with Risperidal(r), the attention span with Adderall(r), and the obsessiveness with Paxil(r) might seem to be excessively complicated, and be an indication that doctors in the US overmedicate children in a dangerous way. On the other hand, if another person thinks that multiple genes are responsible for multiple symptoms, then a father's demand that his children be given as little medicine as possible might be thought of as reactionary, old-fashion and stupid.

I believe that the confusion can be lessened and life can be easier for everyone if what we know and what we don't know about Tourette's is openly discussed and treatment decisions are understood to be practical, not theoretic. So there you have it, two different ways of thinking about just one aspect of Tourette's. There are differences in thinking about many facet's of Tourette's -- what exactly is a tic anyway? for example -- that contribute to the bewildering number of approaches to the problems. Just acknowledging that the different theories exist is a good start on producing that elusive goal for everyone -- the best treatment for Tourette's. For now, it is certainly going to be a different "best treatment" for each individual, and there is no justification for saying or implying that one or another approach is wrong.

Dr. Stowens is a pediatric neurologist in private practice in Pasco. He has treated a large number of patients with TS and associated disorders. He can be reached at (509) 727-2703.

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


Behavioral Treatments for TS and Related Obsessive Compulsive Behaviors

by Diane B. Findley, Ph.D.

Editor's Note: Dr. Findley will be one of the presenters at our February conference. See the enclosed brochure for a description of the program.

People with tic disorders, including Tourette Syndrome, often have obsessive compulsive behaviors and may meet DSM criteria for Obsessive Compulsive Disorder. As with TS, the disorder is chronic and requires on-going treatment and/or supports that emphasize the acquisition of new skills to cope with the challenges these disorders present. Just as medications do not cure these disorders (as antibiotics cure an infection), behavioral treatments do not provide a cure but can, in most cases, make living with the symptoms more manageable. There are several reasons to include a behavioral treatment component in any comprehensive intervention plan. A major advantage is the focus on teaching new skills which can be maintained upon the withdrawal of active treatment. With medication alone, symptoms often return upon withdrawal of medication. When added to medication, behavioral treatments can provide an enhanced (or augmented) response to the medication. Behavioral treatments also may be necessary when there is a lack of treatment response to medication or unwanted side effects. A major drawback is that behavioral treatments often require considerable effort on the part of the person involved as well as parents, teachers, and other involved in the person's life. There may be confounding factors such as depression, which may interfere with the person's ability to participate fully in the treatment.

A basic premise underlying behavioral treatments for these disorders is that, while they are biologically based, the environment can have a significant impact on symptom manifestation. To try to separate what is biological from what is environmental is an impossible exercise as the behaviors are the result of the constant and ongoing interactions between environment and biology and are not due solely to one or the other.

There are three major behavioral approaches for supporting people with OCD and tic disorders. The first two, exposure and response (or ritual) prevention (ERP) for OCD and simplified habit reversal (SHR) for tics and trichotillomania, will only be mentioned briefly as they are covered in much greater detail in many other sources, including King, R.A., Scahill, L., Findley, D., & Cohen, D.J. (1999). In J.F. Leckman & D.J. Cohen (Eds.), Tourette's Syndrome: Tics, Obsessions, Compulsions: Developmental Psychopathology and Clinical Care (pp. 338-359). New York: John Wiley & Sons. Briefly, ERP involves deliberately being presented with the obsession (e.g., getting hands dirty by touching items in a garbage can) and not performing the ritual (e.g., avoiding the washing or cleaning of hands for a specified period of time). What has been shown both clinically and empirically is that the person's anxiety will decrease whether the ritual is performed or not, the difference being that the anxiety decreases rapidly after performing the ritual and much less so if the ritual is avoided. If the ritual is avoided, over time and with much practice, the anxiety decreases more and more quickly until it is either eliminated or reduced to manageable levels. SHR involves two major components and shares some similarity with ERP. The first of these is self awareness training. This component is essential because if the person is unaware of ticcing or hairpulling when it occurs, he or she will not be able to engage in the second component which is using a competing response (CR). Specifically, a CR is doing something different in response to the urge to tic or pull (e.g., clasping hands together for a period of time to avoid pulling hair). As in ERP, after a period of time, the urge to perform the tic or pull hair will decrease. It should be noted that this is an over simplification of these two procedures and one who is interested in learning more should consult more in-depth descriptions and explanations (e.g., the above mentioned book chapter and its references).

The third behavioral approach targets what is usually considered disruptive, oppositional behavior. This is a proactive, preventive approach which has been used successfully with children with ADHD and autism. Although it has not been used in controlled research with children with tic disorders and OCD, there is reason to believe that it could be helpful to these children and their families and teachers. The comprehensive nature of this approach necessitates examining the many factors which contribute to behavior. The underlying biology is only one of several factors. Other factors include a person's learning history (i.e., what happened in the past when the child behaved in a similar manner); the setting characteristics in which the behavior occurs (e.g., temperature, time of day, noise levels, density of other people, etc.); motivational factors (i.e., hunger, sleepiness, fatigue, etc.); and immediate antecedents and consequences (what happened just before the behavior occurred and what happened just after it occurred). Considering only biology or one of these other factors without the others gives us a limited and narrow view of why certain behaviors are occurring.

Understanding the function, or why someone behaves as they do, helps us to understand how we might intervene to change that behavior. There are two important points to remember. First, the same behavior (e.g., hitting) can have different functions. Responding only to the form of the behavior (hitting) rather than the possible different functions (e.g., avoidance of undesirable tasks vs. attention seeking) is likely to produce mixed results. Indeed this is how most behavior plans are structured: "When Johnny hits a peer, he will receive X consequence." This type of plan does little to address the function of the behavior. Second, a specific behavior can serve more than one function. For example, a behavior may begin as a response to an obsession but then become maintained by peer attention. This possibility should be addressed in the intervention.

Designing treatment plans using this approach begins with a thorough functional behavioral assessment which is based extensively on observation and interviews. The assessment begins with careful observations of the child in his or her natural environment, that is, at home and school rather than a clinic office. This should be done for a period of at least one week before making any changes or developing an intervention plan. Observations around specific targeted behaviors should include recording the immediate antecedents and natural consequences as they occur, the environment in which the behavior occurs (setting events) and motivational factors (establishing operations). Interviews with parents and teachers will provide information regarding the child's particular learning history. From this sort of careful assessment, patterns will emerge which should then be used to design treatment plans and interventions. It is essential that the intervention be directly based on this assessment. While this approach can be very intensive in regard to the time needed for the assessment, in the long term it will save time, as much of the guesswork in trying to "figure out what is going on" will be eliminated. Rather, those involved in the child's care will have a good understanding of the function or purpose of the behavior and will be able to base treatment on this understanding.

Parents and teachers frequently ask, "How much control does he have over this? It looks like he's doing it on purpose but if he's not, I don't want to tell him to stop if he can't help it." A functional behavior assessment should help to clarify this issue. For example, after collecting the information, it may be determined that every time the child performs the behavior he is given attention by peers and that he never performs the behavior in the absence of peers indicating that attention from peers is maintaining the behavior. On the other hand, he may be observed performing the behavior regardless of the presence or absence of peers, thus indicating that the behavior is possibly being maintained by internal processes such as to obtain relief from an urge to perform the behavior or to avoid the anxiety of an obsession.

A functional behavioral assessment and plan is one component of a comprehensive treatment plan which may include a wide range of approaches such as special educational programming, psychopharmacology, and psychotherapy. While not all children with these disorders need this full range of services, it is important for parents and teachers to be aware of therapeutic options.

Reprinted with permission from the TSA Connecticut Chapter Newsletter, Fall 1999


SCHOOL NEWS

IDEA and Private Schools

When Congress reauthorized the IDEA in 1997, they added new requirements about parent notice and reimbursement for private placements. If parents decide to place their child unilaterally in a private school and want the school to reimburse them for the private placement, parents must take specific steps to protect their rights.

The parents must advise the IEP team that they are rejecting the proposed IEP and state "their concerns and their intent to enroll their child in a private school at public expense." Or, 10 business days before removing the child from the public school, the parent must give the school written notice of "their intent to enroll the child in a private school at public expense." If parents don't take these steps, they may lose their right to reimbursement for the private placement -- even if the public school placement was inappropriate.

IDEA and Home Schooling

In September, the U.S. Court of Appeals for the Ninth Circuit issued an opinion holding that, pursuant to the IDEA, states have discretion to determine whether home education constitutes an IDEA qualifying educational environment. Hooks, et al. v. Clark County School District, et al. (9th Cir., Sept. 21, 2000). The Court also held that the school district's policy of limiting IDEA funds to institutional schools does not unconstitutionally offend equal protection principles or infringe on the parents' liberty interest in guiding their child's education.

The case regarded a Nevada child who was home schooled by his parents, In 1996, the child was deemed to be eligible for speech therapy services. The parents requested subsidized services from their local school district, even though there was no claim that home education was necessary to treat the child's disability, and even though he was not enrolled in any school within the school district.

The school district, in accordance with its policy, opted not to provide the services. The parents filed a suit alleging that the school district's policy violated the IDEA and the Fourteenth Amendment. When the district court ruled in favor of the school district, the parents appealed.

Since the court action was filed, the Nevada legislature has amended state law requiring school districts to provide special education and related services to children who are exempt from compulsory attendance pursuant to the home-education exemption and receive instruction at home. The Appeals Court, however, decided against the parents since the claim was made prior to the enactment of the new law.

The Court also ruled that the IDEA leaves discretion to the states to determine that home education that is exempted from a state's compulsory attendance requirement does not constitute an IDEA-qualifying "private school or facility." According to the federal Office for Special Education Programs, the determination of whether a home education constitutes private school placement must be made on the basis of state law.

A copy of the Court's Opinion is available to download in pdf format at www.specialedlaw.net

Puyallup School District Ordered to Correct Special Ed.

Last July, the state superintendent's office released a response to a complaint filed by eight families in the Puyallup School District. The complaint had charged that the district had failed to meet the special needs of their disabled children. The superintendent's response ordered the district to conduct additional training for the special education administrators, teachers and other staff members in two areas: the proper way to conduct parent meetings regarding students' IEPs, and parent and student rights to confidentiality including how to protect educational records. The additional training was ordered in response to specific findings by OSPI including the fact that parents weren't always given a say in the development of IEPs, not all IEPs had parent approval, student confidentiality had been breached, and the communication between the schools and the parents was not adequate. OSPI is currently investigating complaints against the Federal Way and Bethel school districts as well.

DO-IT Scholars

DO-IT (Disabilities, Opportunities, Internetworking, and Technology) is a University of Washington outreach program which targets high school students with disabilities, helping them to explore careers and to gain the prerequisite knowledge needed for success in college and employment. The DO-IT Scholars program consists of three phases, each lasting one year. At the end of Phase I, it is optional to continue on to Phase II and III.

In Phase I, scholars participate in the following activities:
Internetworking - Scholars learn to use computers to enrich their education to explore academic and career interests using the Internet. They communicate electronically from home using computers, modems, software and Internet network connections. Scholars who don't have the required technology are loaned equipment and software while they participate in the program.
Mentoring - E-mail communications and personal contacts bring Scholars together with Mentors to facilitate academic, career and personal achievements. Mentors are college students, faculty and practicing engineers and scientists, many with disabilities themselves.
Summer Study I - During a two-week, live-in summer program at the University of Washington, Scholars participate in academic lectures and labs; live in residence halls; and practice skills which will help them be independent and successful in a college setting. Scholars are not charged for this live-in program.

Phase II Scholars are supported with information about college application procedures, entrance requirements and additional tips and resources to help them prepare for their transition to college. They also participate in the following activities:

Projects - Scholars apply their interests, skills and knowledge to design and complete independent and team projects with the Mentors and staff acting as resources.
Internetworking and Mentoring - Scholars develop and practice communication and leaderships skills by acting as peer mentors for incoming Phase I Scholars.
Summer Study II - Scholars return to the University of Washington for a one-week, live in-in summer program.

Phase III includes opportunities for DO-IT Scholars to contribute to the program. Examples of individual activities include mentor program development, scientific resource management, information systems administration and newsletter production. Scholars can also become Ambassadors who help with program activities, participate in electronic communications and mentor younger scholars.

Twenty Washington students with disabilities are chosen each year to participate in this program. High school students in their sophomore or junior year are encouraged to apply by December 31. After that date, applications continue to be accepted on a space available basis, including applications from freshmen. For an application form, contact DO-IT at (206) 685-3648, or (888) 972-3648 or e-mail doit@u.washington.edu. Check out their web site at www.washington.edu/doit/


LEGISLATIVE UPDATE

by Jai Kelly

The Family Opportunity Act
This bill would allow working families with seriously disabled children to buy into Medicaid when their own insurance is inadequate. It has still has not passed in Congress. This is in spite of the fact that the bill has the backing of the President and strong support from both Democrat and Republican legislators. If you feel this bill is important, contact your Senators (Murray and Gorton or Cantwell, depending on who wins the Senatorial election) and Congressperson and let them know how you feel. If this Act passes in the U.S. Congress and is signed into law, also contact your state legislators to let them know you would like to have this program implemented in Washington state.

Ticket to Work Act
This federal law has yet to be implemented in Washington state. The act will assist those with disabilities (who wish to) find meaningful employment. Since this program is implemented on a state level, the state legislature must pass legislation before it can offered to our state's citizens. State Rep. Eileen Cody has been especially interested in this and will work hard again this coming legislative session (beginning in January 2000) to see it is implemented.

Employment Opportunities for the Disabled
In late October, President Clinton announced that the Social Security Administration is awarding $8 million in grants to 43 non-profit organizations and/or state agencies in 26 states and two territories to provide benefit planning, assistance and outreach for persons with disabilities who are attempting to return to work. In Washington state the following have received grants under this program: Social Security Benefits Increase
Social Security and Supplemental Security Income (SSI) benefits will increase 3.5% in 2001. This increase will begin with benefits that Social Security beneficiaries receive in January 2001. Increased payments to SSI recipients will begin on December 29.

Medicaid Change
President Clinton announced a new regulatory initiative for Medicaid which will disregard income so that more people with disabilities can qualify for Medicaid and receive services and supports in the community.

TS in National Legislation
In September, the House and Senate both passed the Children's Health Act of 2000. It is expected that the President will sign it. This voluminous bill, which has provisions on numerous diseases and health issues, is significant for us because it contains a specific provision authorizing public monies to be spent for educational programs about Tourette Syndrome. Although the actual appropriation of funds for the programs will require additional legislative action next year, this is the first time Tourette Syndrome has been named in a piece of federal legislation, and thus we view it as a major landmark in the development of public awareness, especially on Capitol Hill. The legislation was based on a program that had been put together by Jo Gonzalves, Mark Levine, and Sue Levi-Pearl of the national Tourette Syndrome Association. Throughout the process, TS advocates were guided by TSA government relations specialist, Judi Buckalew.

ADA Notification Act Another threat to the ADA which was mentioned in our last newsletter was the ADA Notification Act (H.R.1590). This Act would give businesses 90 days AFTER a complaint was received to comply with the provision of the ADA which requires larger businesses to make their buildings accessible to the disabled. An individual could not file suit if the business worked to comply with the law within that time frame. In early October this bill resurfaced in the U.S. Senate. Senator Tim Hutchinson (R-Arkansas) has introduced S. 3122. The bill has been referred to the Committee on Health, Education, Labor, and Pensions (HELP) which is chaired by Senator James Jeffords (R-Vermont). Contact information for the HELP Committee can be found at: www.senate.gov/committees/committee_detail.cfm?COMMITTEE_ID=490. Please contact Chairman Jeffords, committee members, and your own congressional delegation. Also contact Senator Hutchinson's office at 202-224-2353.

Funding of IDEA
The Senate Health, Education, Labor and Pensions (HELP) Committee approved the Full Funding for Individuals with Disabilities Education Act on Sept. 20. This Act would authorize funding for Part B of IDEA at $7 billion for Fiscal Year 2001 and increase funding over the next ten years by $2 billion per year. Under this bill, the goal of paying 40 percent of the cost to the states of providing special education and related services as authorized under the original law would finally be reached. An identical bill passed the House in May. Unfortunately, even if the Senate bill is passed, the fiscal year 2001 budget only provides a 1.3 billion increase for IDEA state grants. This makes the passage of the bill merely symbolic at this point in time. However, Senator Harkin (D-Iowa) stated he would offer an amendment to mandate full funding for IDEA by 2001 by tapping non-Social Security supplies funds if the bill reaches the Senate floor. However, most of those concerned with this I sue believe it is unlikely that the S.2341 will see floor action before the end of this Congressional session. This is one more reason to let your Representatives know which bills are important to you.


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