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PLUK News August/September 1999 Volume 14 Number 1/2
	PLUK News is published by Parents, Let's Unite for Kids, a private nonprofit organization founded in 1984 by a group of parents of children with disabilities and chronic health problems. Subscriptions are free, however, we ask that subscribers contribute $15/year toward PLUK activities. PLUK News is available in alternative formats. Editor: Katharin A. Kelker, Ed.D. Production: Roger Holt, ATP PLUK Office 516 N 32nd St Billings MT 59101-6003 800.222.7585 in MT; 406.255.0540 (voice/TT); 406.255.0523 (fax) E-mail: plukinfo@pluk.org
The contents of this newsletter were developed under a grant from the Department of Education. However, those contents do not necessarily represent the policy of the Department of Education and you should not assume endorsement by the Federal Government. Products and services described herein are not endorsed by PLUK, the U.S. Department of Education, or by the Federal Government.

Article Index

PLUK Staff E-mail Addresses First Steps Updated What's New on the PLUK Website PLUK's New Positive Behavior Video Conference on Developmental Disabilities IDEA '97 Quiz: Did You Know? OSEP Withholds Funding IDEA Discipline Protections Tough-on-Crime Policies Patient Bill of Rights PLUK Volunteer Opportunities New MT Mental Health Program Pilot Mental Health Services Financial Help with Placement Tests Alternatives to Suspension ASK PLUK??? Parent Corner MT Child Care Resource Directory

Billings Community Lifespan Respite New Source for ADD Information Library for Open-Captioned Videos Benefits of Cochlear Implants Secretin Called Unproved Therapy Antidepressant Discontinuation Alzheimer's Drug May Help Language Equity for Young Women w/Disabilities Disability Information on Tourette's HONOR ROLL What's New in the TRIC/PLUK Library? Looking for Good Deal on a Computer? Looking for an iMac? Internet Access for $10/month What is PLUK? PLUK Publications PLUK Facts PLUK Training Workshops

From the angels around us...

Ron & Diane Brown

Janet Jansen

Melinda Brennan

Thanks to Everyone!!!

Parents, Let's Unite for Kids would like to thank the following donors and sponsors for the 2nd Annual Barn Raising which was held on Sunday, August 29, at the Shiloh Barn in Billings:

Jansen Livestock Company- Janet Jansen, Welch Heart Center- Michael & Melinda Brennan, Laureate Learning Systems, A-1 Landscaping, Martha & Ramona Weber, Herbergers- John Moberly, Susan Ogden, Bob Durden, Mark Zimmerer, LeeAnn Logan, Janice Sand, Fly In Lube, Ben Franklin, American Furniture Warehouse, Geyser Park, Moss Mansion, The Learning Clinic- Mark Taylor & Rosanna Buehl, Office Max- Bernie Greenfield, Shanna Ahmed- Butte, MT, COSTCO -- Billings and Missoula, Wendy's Hamburgers, Video Library, Carmike Cinemas, Western Office Equipment, The Gift Gatherer- Pat Speck, The Bluegrass Association Band, Concrete Unlimited, Rimrock Art and Frame, Daniella Blowers, Lila Hansonl, Terry Austin , Susan Carlson, Brendan, Shannon, & Quinlan O'Connor, Ginger Thockmorten - Butte, MT, Anne Galasso, Susan Barton, Dr. Craig Stannebein, Vanessa Richards, Nancy Staigmiller, Pepsi- Mike Dimmich, Meadow Gold Dairy, Zoo Montana- Ken Pederson, Pet Pantry, Evergreen IGA, Smith's Grocery, County Market, Ryans Supervalu, Let's Party, Pork Chop Johns- Butte, MT, Margie Procoff, Target, Wal-Mart, Red Lobster, Fuddruckers, Junga Juice, Mackenzie River Pizza, Dos Machos - Leif Welhaven, Barnes & Noble, SUPERPUMPER, Jan Duffy, Pro Lube Express, 17th Street Conoco, Sophisticut, New Horizons Hair Fashion - Sue Lowrey, Heads Up - Sue Goddard, and Hair Country- Kim Carlos & Annie Walters.

This year's event included 37 silent auction items, and many door prizes and children's games. Through the support of these wonderful individuals, PLUK can continue to support and meet the needs of families and children with disabilities in Montana.

All PLUK Staff Now Accessible Via Internet E-mail

For those of you who utilize the internet, update your address books. All PLUK staff are now available by e-mail. The complete address list is as follows:

DeLand, Virginia - vdeland@pluk.org
Duffy, Jan - jduffy@pluk.org
Galasso, Anne - agalasso@pluk.org
Hayworth, Emmy - ehayworth@pluk.org
Holt, Roger - rholt@pluk.org
Johns, Rebecca - rjohns@pluk.org
Kelker, Kathy - kkelker@pluk.org
Lerner, Mary - mlerner@pluk.org
Macdonald, Angus - amacdonald@pluk.org
Mauritzson, Audrey - amauritzson@pluk.org
Mills, Molly - mmills@pluk.org
Sand, Janice - jsand@pluk.org
Staigmiller, Nancy - nstaigmiller@pluk.org
Tomlinson, Deb - dtomlinson@pluk.org

There are also a couple specialty email addresses for patrons to use for information. They are:

PLUK Information - plukinfo@pluk.org
TRIC Library - triclibrary@pluk.org

First Steps Updated and Now Available

First Steps A Parent Information Handbook: Infant and Toddler Programs/Preschool Special Education has been updated and reprinted to conform to the latest regulations from IDEA '97. The handbooks are available for free to parents and early intervention agencies by contacting the PLUK office (406/255-0540, 1-800-222-7585 or plukinfo@pluk.org). Funding for the updated publication has been provided by the Developmental Disabilities Program of the Department of Public Health and Human Services. The updated version of the publication is also available on the internet at PLUK's website: http://www.pluk.org.

What's New on the PLUK Website: http://www.pluk.org

Most PLUK publications and newsletters may be viewed on the PLUK website. New additions include:

• Parents Guide to Transition: What Happens After High School?
• The Updated First Steps: Infant and Toddler Programs and Preschool Special Education
• Appendix A of IDEA '97

On the Way to Success: Positive Approaches for Improving Behavior

PLUK's new video: On the Way to Success: Positive Approaches for Improving Behavior is now available. The 30 minute Close Captioned video is available for checkout from the TRIC/PLUK library (406/255-0540, 1-800-222-7585 or triclibrary@pluk.org. It may also be purchased for $15/copy. Funding for production of the video has been provided by the Devclopmental Disabilities Planning and Advisory Council (DDPAC).

Montana Conference on Developmental Disabilities

The 1999 Conference on Developmental Disabilities will be held this October 27-29 in Billings. Registration for the conference is open to all persons interested in issues concerning individuals with developmental disabilities. Hotel room blocks at the low state rates are available at participating facilities. To receive a copy of the tentative agenda with registration materials, please contact Perry Jones at 406/444-2995 or Pjones@state.mt.us. Preregistration ends October 13th.

IDEA '97 Quiz: Did You Know?

The Individuals with Disabilities Education Act (IDEA) has many new provisions that were added in the congressional revisions of 1997. Many of the changes provide clarity to the old provisions or even greater protection or support for children in special education. It is important for parents to become informed about IDEA '97. Check yourself concerning the following new provisions (numbers in parentheses refer to sections of the law).

• A student is not considered a "child with a disability" if he or she needs only a related service and no special education (300.7(a)(2)).
• The definition of "parent" in IDEA now includes a natural or adoptive parent and a foster parent if the natural parents no longer have custody and the foster parent has a long-term relationship with the child.
• Occupational therapy must be performed by a qualified occupational therapist (330.24 (b)(5)).
• Orientation and mobility services have been added to the list of related services (330.24(b)(6)).
• "Travel training" and "specially designed instruction" were added to the definition of special education (330.26).
• Under Parent Counseling and training, school districts must help parents acquire the necessary skills that will allow them to support the implementation of their child's IEP or IFSP (330.24 (b)(7)).
• The definition of psychological services now includes "assisting in developing positive behavioral intervention strategies" (330.24 (9)(vi)).
• The definition of social work services in schools now includes working "in partnership with parents and others" on those problems in a child's living situation" (300.24 (13)(iii)).
• Under Transition Services, "related services" is now included in a "coordinated set of activities" (300.29(1)(3)(ii)).
• FAPE must be provided to students with disabilities, even if they've been suspended or expelled from school (300.121(a)).
• Child-find requirements are extended to highly mobile children with disabilities, such as migrant and homeless children and students who are advancing from grade to grade (330.125 (a)(2)).
• Districts must participate in transition planning conferences arranged by the Part C lead agency (330.132)). Part C refers to the special education services provided to infants and toddlers from birth to age 3.
• School districts must, on a case-by-case basis, allow the use of school-purchased assistive technology devices in a chid's home or other settings if the IEP determines the student needs access to those devices to receive FAPE (330.308 (b)).
• School districts must make a student's IEP available to each regular and special education teacher and related service or other service provider who is responsible for its implementation. In addition, each teacher and provider should be informed of individual responsibilities related to implementation (330.342).
• Districts must inform parents that they may invite other individuals with knowledge and expertise to participate in an IEP meeting (300.345).
• The Family Educational Rights and Privacy Act governs which special education and disciplinary records of a student may be transmitted to law enforcement officials (300.529).

More information about IDEA '97 and its accompanying regulations is available at: http://www.ed.gov/offices/OSERS/IDEA/regs.html.

Office of Special Education Programs Withholds Funding

Federal IDEA funds for fiscal year 1999 became available to states on July 1, but the federal government is withholding money from several states over compliance concerns and has awarded funds to other states with "special conditions" attached.

The states receiving special conditions on their grant awards include: Pennsylvania, New Jersey, New York, and California, the Virgin Islands and Washington DC. Withholding federal funds is the ultimate sanction that a state can receive for failure to implement IDEA and its provisions. Funds will not be released to these states until they complete corrective actions or provide OSEP with documentation that problems have been addressed.

Children with Disabilities Could Lose Protections

Special education students who have discipline problems may lose some of the protections they now have under the Individuals with Disabilities Education Act (IDEA), if provisions of both the House and Senate versions of the Juvenile Justice Bill become law.

These provisions would...

• Allow school districts to suspend and/or expel a child with a disability who carries, or possesses a gun or firearm to school, on school premises or at school functions.
• Allow school districts to cease educational services to children who have been expelled or suspended from school for firearms violations.

Under current law, even if a special education student is suspended or expelled that student cannot be denied educational services.

Before the IDEA '97 regulations which were published in March 1999, the IDEA '97 statute and its predecessor were interpreted as limiting the number of suspension days to an aggregate total of 10 days per school year.

The new IDEA regulations now allow schools to suspend children with disabilities for ten school days, per incident, as long as suspensions do not constitute a pattern.

However at present, students with disabilities cannot be suspended for more than a 45 day period, and during that time, educational services in an alternative setting must be provided. If the cessation of services provisions of the Juvenile Justice Bill become law, special education students could be expelled for weapon offenses and educational services would not have to be provided during the period of expulsion.

The House and Senate versions of the Juvenile Justice Bill contain different language so they are currently being reconciled by a Conference Committee. Disability advocates and some education and juvenile justice leaders are focusing efforts on getting conferees to remove the IDEA amendment entirely from the juvenile justice legislation.

Kids with Disabilities Endangered by Tough-on-Crime Policies

A case in Florida illustrates a disturbing trend in the criminal justice arena. State Attorney Barry Krischer was prepared, until he received pressure from national media, to prosecute a 15 year-old youth with mental retardation for an adult felony because he was alleged to have stolen two dollars from a schoolmate. Krischer dropped the felony robbery and misdemeanor battery charges against Anthony Laster only after a "60 Minutes" TV crew arrived to investigate the case.

This particular case focused attention on prosecutorial discretion and the practice of some prosecutors like Krischer of routinely sending juveniles into adult court without consideration of their individual circumstances.

Anthony Laster was accused of demanding lunch money from a 14 year-old boy at Congress Middle School in Boyton Beach, Florida. When the boy refused, Laster pulled $2.00 from the student's pocket. The boy later told investigators that Laster had threatened to hurt him if he didn't hand over the money.

Laster, who has an IQ of 58, was charged with strong-arm robbery, which is taking property by threat of physical force or harm. He spent four weeks in jail because his family was unable to raise $500 to bail him out. If convicted as an adult, he would have faced up to 15 years in prison.

After "60 Minutes" warned the Florida prosecutor that the program planned to film Laster's court hearing, the prosecutor withdrew the charges. However, in the past Prosecutor Krischer has filed adult charges against more than 600 juveniles who were prosecuted as adults without consideration of the circumstances or actual seriousness of their alleged crimes.

Disability Advocates Watch Congressional Action on Patient Bill of Rights

Ensuring consumer satisfaction with managed medical care insurance plans has become a controversial topic in the U.S. Congress. The Republican leadership has introduced a bill in the Senate which is intended to define the rights of patients who are covered by self-insurance plans. The Clinton administration has also attempted to introduce more sweeping legislation to guarantee certain protections for a broader range of individuals covered by managed care insurance plans. The strongest proposal seems to be H.R. 2723--the Bipartisan Consensus Managed Care Act of 1999--, introduced in the House by Reps. Norwood (R-GA) and Dingell (D-MI).

For individuals with disabilities or chronic health problems, these political debates touch on vital issues impacting their ability to get necessary medical care despite limitations sometimes imposed by managed health care plans. Issues being hotly debated include the following:

• Allowing doctors to make decisions about length of hospital stays;
• Holding managed care plans accountable when their decisions to withhold or limit care result in injury to patients;
• Providing for an independent appeals process and broad leeway for patients to appeal managed care company decisions;
• Allowing patients undergoing a course of treatment (such as chemotherapy) to continue to see the same health care professionals, even when their employer switches insurance plans;
• Assuring that women can obtain ob-gyn services from the participating health care professionals of their choice;
• Requiring that plans have an adequate network of providers;
• Assuring access to specialists (inside or outside the network);
• Not allowing denial of access to clinical trials;
• Ensuring that doctors and nurses can report quality problems without fear of retaliation; and
• Assuring access to an independent consumer assistance program to help individuals choose plans and get the services they need.

For more information about Patients' Bill of Rights, consult the webpage of the National Parent Network on Disabilities at http://www.npnd.org. The ARC website also has some good information about managed care bills at http://www.thearc.org/ga/Governmental_Affairs.html.

PLUK Volunteer Opportunities

Audrey Mauritzson has assumed the position of Disability Awareness and Volunteer Coordinator for Parents, Let's Unite for Kids. Audrey will be replacing Volunteer Montana! representative, Elizabeth Popp, in recruiting, interviewing, and evaluating volunteers for the Parent Support Network Volunteer Program.

PLUK currently provides support to over 6,000 individuals and families of children with disabilities throughout the state of Montana. The demand for family, community, and school-based information is increasing rapidly. All of PLUK's services are free, and the need goes beyond what current funding, based on grants and donations, can provide. So far, PLUK has received over 20 applications from parents statewide who wish to volunteer for the Parent Support Network. These experienced parents will assist PLUK's regional representatives in providing information and support to other parents and PLUK staff.

Volunteer positions available include: Parent Support Contacts, Receptionist & Office Assistants, and Information & Library Volunteers. In addition, three new position titles have recently been created. PLUK is in need of Disability Awareness Volunteers, Fundraising Volunteers, and an attorney or trust officer to assist individuals setting up a self-sufficiency trust for themselves or a family member.

PLUK is still looking to recruit volunteers for all positions, especially in Eastern Montana, and the Great Falls and Missoula areas. For an application and job description, please contact Audrey Mauritzson at 255.0540, 800.222.7585 (toll free), 406/255-0523 (fax), or amauritzson@pluk.org.

New Montana Mental Health Program Under Way

The Department of Public Health and Human Services (DPHHS) began overseeing all state-supported mental health services on July 1, 1999. DPHHS has assumed these responsibilities since the termination of the state's contract for managed mental health care with Montana Community Partners (MCP).

The 1999 Legislature instructed DPHHS to end its contract with MCP and move to a new regional system. With the assistance of three private contractors--TRW, Consultec, and Mountain Pacific Quality Health Foundation--DPHHS has created the Mental Health Services Plan (MHSP) which serves about 20,000 Medicaid and low-income uninsured Montana residents.

One of the problems with the previous managed care contract was that the managed care companies were never able to create a continuum of mental health services, including a variety of options within local communities. With the new system, DPHHS hopes to try out different ways of delivering community-based mental health services. Several pilot programs are due to be tested in early 2000 to determine which service models will work best in Montana.

A new Advisory Council was appointed on July 2, 1999, to assist in directing the state's mental health program. Unlike the Advisory Council that served during the managed care experiment, the new council is weighted toward membership of individuals who are themselves consumers of mental health services, secondary consumers (e.g., family members of persons with mental illnesses), or advocates for persons with mental illnesses. Members of the Council include: Sen. Bob Keenan (Bigfork); Laurie Ekanger (DPHHS); Tim Miller (Bitterroot Cooperative); Gary Day (District Judge, Miles City); Patty Kent (Housing Coordinator, Missoula); Claudia Clifford (Insurance Commissioner representative); Joan-Nell Macfadden (advocate, Great Falls); Sen. Mignon Waterman (Helena); Don Harr, MD (psychiatrist, Billings); Kathie Bailey (Fergus County Commissioner); Sandy Mihelish (consumer representative, Helena); Boyd Roth (consumer representative, Kalispell); Ernest Szechenyi, MD (consumer representative, Missoula); Brian Garrity (consumer representative, Helena); Maryann Wells (consumer representative, Glendive); Dan Foster, Ph.D. (consumer representative, Browning); Kathy Kelker (consumer representative, Billings); Barbara Hogg (consumer representative, Billings); and Ginger LeBret (consumer representative, Dillon).

DPHHS has hired Bonnie Adee to serve as the Mental Health Ombudsman. Her role is to answer questions from consumers, assist consumers in accessing mental health services, and to afford consumers with an avenue to lodge complaints or concerns about the mental health system. To contact Ombudsman Bonnie Adee, call toll free 1-888-444-9669. Adee's office is located at the Mental Health Board of Visitors, 1412 1/2 8th Ave. in Helena (one block north of the Capitol). The local telephone number is 444-9669. The e-mail address is: mentalhealthhelp@state.mt.us.

Guidelines for the new mental health system, including a list of the diagnoses covered, are available on the DPHHS website at http://www.dphhs.state.mt.us/hot/mhap99/coveredx.htm.

Pilot Mental Health Services Planned

As one of the first experiments in service delivery of the new state-managed mental health system, a Program of Assertive Community Treatment (PACT) will be piloted in Billings and Helena starting November 1st. PACT is a service model that originated in Wisconsin and is designed to provide treatment and support in community settings for adults with severe and persistent mental illnesses. This level of service is intended to expand existing community-based services so that individuals with intense service needs will not have to be hospitalized and can remain in their local communities. For more information about PACT, contact Rusty Redfield (444-4924), or plan to attend the Mental Illness Conference in Great Falls on October 13-15 at the Heritage Inn. One of the scheduled speakers at the conference is PACT consultant Deborah Allness of the University of Wisconsin.

Financial Help with Placement Tests

The Office of Public Instruction has received a federal grant to help low-income students pay the costs of taking Advanced Placement tests for college. Students who took the tests during last school year may request reimbursement for some of their costs. Also, high schools, and particularly guidance counselors, should inform low-income students taking AP courses that their entire fee for each AP test will be waived in the spring of the year 2000. For more information, contact Kathleen Mollohan at OPI (444-4317).

Alternatives to Suspension

Suspension--having students not attend school for a period of time--is used frequently in schools as a punishment for behavioral infractions, particularly for aggressive behavior, defiance, fighting, or repeated breaking of rules. Unfortunately, there is little evidence that for children with chronic behavior problems that out-of-school suspension acts as a deterrent. In fact, some students may act out because they want to be suspended from school. Others continue to misbehave because they have not learned how to curb their aggressive or defiant behavior.

Behavioral consequences or interventions other than suspension may, in fact, be much more effective in curbing repeated offenses. Here are some alternative suggestions:

1. In-school suspension. The student reports to a designated area for a predetermined amount of time, working on classroom assignments (addressing IEP goals) under the supervision of an adult. During the time the student is in in-school suspension, he or she is denied access to reinforcement (e.g., the attention of peers) and has limited privileges.
2. After-school detention. Time after school can be an effective deterrent because it cuts into the student's free time. Again, the student should have the opportunity to work on assignments under the supervision of an adult.
3. Lunch detention. The student is provided with a place to have lunch without the companionship of peers and is supervised by an adult. Again, this can be an effective consequence because it interferes with a student's social time.
4. Work detail. Under adult supervision the student is required to complete a specific work or cleaning task, which is usually related to an instance of property destruction or vandalism the student committed. Parents should be made aware of this consequence and agree in writing to this alternative.
5. Restitutional overcorrection. Following an occurrence of property destruction (e.g., kicking a locker door), the student is required to restore the environment to a state better than its original condition. For example, if the student damages one locker, he or she may have to repair 20 lockers. Again, parents should provide written consent for this restitution procedure.
6. Time-out in an instructional setting. The student remains in the instructional setting but is denied access to reinforcement (e.g., removed from peers) for a pre-specified period of time. This kind of removal can be effective to curb the behavior of students who are disruptive but not aggressive or defiant.
7. Time-out removed from instructional setting. The student is removed from the instructional setting to a setting that provides little or no reinforcement from staff or peers for a specified period of time (e.g., removal to the hallway).
8. Seclusionary time-out (time-out in a time-out room). Seclusionary time-out should only be used for the most serious or dangerous misbehaviors. The student is removed from the instructional setting to a designated time-out room for a specified period of time (typically about one minute per year of age). The area is environmentally engineered to deny the student access to reinforcement from adults or peers.

   Time-out rooms must be well lighted, well ventilated and accessible to visual checks by an attending adult. By Montana law, written informed consent of the parent must be obtained prior to implementation of this procedure. A log must be kept to document all occurrences that warrant seclusionary time-out.

   Seclusionary time-out is only effective in decreasing the frequency of misbehavior when it is used in combination with high rates of reinforcement for alternative, appropriate behaviors. In other words, a student who displays behaviors severe enough to warrant seclusion time-out should also receive instruction and reinforcement for replacement behaviors that would eliminate the need for the inappropriate behavior.

ASK PLUK???

The following questions are recent inquiries received by PLUK staff.

Q: At every IEP meeting, the principal at our son's school makes some remark about "parents being as accountable as the school" for the outcomes of the IEP. What is he talking about? Is there something about the IEP that is binding on the parents?

A: The IEP is a description of the individualized goals and objectives your child will pursue during the school year. In the IEP, the services that the school district will provide are described. When the IEP is signed by district personnel and parents, it becomes a blueprint for the special education services delivered to your child by school district staff. The school district is accountable for providing the services, but is not accountable for the student's outcomes. In other words, the IEP does not guarantee that the student will achieve all of the goals and objectives or receive certain grades.

The IEP process obligates school districts to provide services; it does not obligate parents to anything. Parents have the right to participate on the IEP Team and help to develop the plan, but the parents are under no obligation to implement the IEP. For some students, it is helpful for parents to use at home similar techniques for behavior management or communication to those used at school. The consistency between home and school can make it easier for a child to learn new skills and retain them. Most parents are very willing to follow-through at home if they know what to do and how to do it. However, parents are under no legal obligation to follow a particular regime that is outlined in the IEP.

Some school officials would like to place requirements on parents, but this is not an aspect of special education. Parents of children in special education cannot be required to do anything that is not also required of parents of children in general education.

Q: Our daughter is seven and has severe multiple disabilities. She has been in public school special education programs since she was three. So far she has attended three different elementary schools. This year the school district is proposing to move her to still another school. Not one of these schools has been her neighborhood school. We would like all this moving around to stop and have our daughter attend the same elementary school until she moves on to middle school. Are we within our rights to request some stability in our daughter's school placement?

A: It certainly must be confusing for your daughter to attend a different school each year! It makes sense for you to work with school district personnel to design a plan which will allow your daughter to form a peer group and become acquainted with a school environment where she can expect to be from year to year. The Individuals with Disabilities Education Act (IDEA) makes clear that there is a preference in the law for children to be placed in regular education environments unless removal to another environment is necessary to meet the child's needs. According to IDEA '97, placement decisions must be based on the student's needs and not on such factors as the student's classification, availability of services, configuration of the service delivery system, availability of space, or administrative convenience.

Why don't you contact the district director of special education and ask for a planning meeting at your daughter's neighborhood school (or a school that is as close as possible to your neighborhood school)? See if you can develop a service plan for your daughter that could be implemented in her home school over multiple years so that you can count on stability for a period of time. This is not an unreasonable request and should be feasible. Be sure that your daughter's IEP includes opportunities for her to interact with children her age. If necessary, include in the IEP goals and objectives related to forming friendships and communicating with peers.

If you are not successful in devising a plan which allows for stability of placement for your daughter, you may want to talk with members of your school board to discuss with them the district's policies concerning placement of children with special education needs. The trustees should be made aware that special education placements are not to be made for the district's convenience, but to meet the individual child's needs.

Q: Our son who has Down syndrome is a freshman this year in high school. We would like our son to take 5 or 6 years to complete high school with the last two years being mostly community-based employment experiences. The school district is telling us that our son must graduate in four years with his chronological peers. Isn't there some way our son could spend more time in high school since he learns more slowly than other students and may need more time to learn the skills he needs to make a successful transition?

A: Providing special education services for students past the age of 18 is a matter left to the discretion of individual school districts in Montana. Federal law allows districts to provide services from 18 through 21 and federal monies can be used for these "overage" students, but states have the right under federal law to determine if they will offer services to student over 18. In Montana, the decision to serve students past 18 is left to local control so policies vary from district to district. No school foundation monies or state special education dollars are provided to districts to serve students past the age of 18, so there is reluctance on the part of districts to continue services when they are not receiving state financial support to do so.

To clear up your particular situation, you need to do the following things:

• Find out what your school district's written policies are about graduation and serving students past the age of 18;
• Find out also if your school district allows regular education students to continue in high school when they are 19 or 20.

If your school district has no written policy saying that special education services end when the student completes the school year when the student is 18, then you have the right to request additional years of schooling through the IEP process.

If your school district serves general education students past the age of 18 or has a history of having done so, then your child has as much to right to additional years of schooling as any other child in the district.

If you cannot agree with the district about your child's length of stay in high school, you can take this disagreement to due process and request an impartial hearing.

Q: Last year I was frustrated with my son's special education program because I couldn't seem to get progress reports on the IEP objectives. We received report cards but they didn't tell us anything about the IEP. When I asked to see the data the teacher was keeping, the teacher said she didn't have to show me the data. How can I get regular updates on the IEP if I can't see the data?

A: First of all, you are entitled to receive progress reports on the IEP as least as often as other parents receive progress reports on their children's school work. If your child's IEP does not mention how often IEP progress reports will be provided, you should ask for an IEP Team meeting and add information about when progress reports will occur.

In terms of the actual data the teacher is collecting, you most certainly have the right to see that data (1) if it is personally identifiable information, and (2) if the teacher shares that information with anyone else--other teachers, counselors, therapists. If for some reason, the teacher collects data for her own use and never shares it with anyone else, then he or she does have the right to refuse to share the information. However, if the teacher uses this data to make decisions about your child's education, then you and the other members of the IEP certainly should be made aware of the data and be involved in any decisions which would change aspects of the IEP.

Q: My 10 year-old son has been diagnosed by a neurologist as having Asperger Syndrome. Based on this diagnosis, I asked the school district to test our son for special education, but the district refused because Asperger's is not a special education category. Is this correct? Our son really struggles with school work and has many social problems. Can't we get him some help?

A: A medical diagnosis of any particular condition does not automatically ensure that the child will be eligible for special education. The child would have to be tested to see if his or her symptoms match the eligibility criteria for one of the legally recognized disability categories. It is true that Asperger syndrome is not a special education category, but testing may reveal that your son has the characteristics of one of the recognized conditions like learning disabilities, emotional disorder or other health impairment.

If your son is struggling in school, you can certainly ask to have him tested to see if he is eligible for special education services. If he does not meet the eligibility criteria for any of the special education categories, he may still be eligible for classroom accommodations under Section 504, a federal antidiscrimination statute.

Put your request for special education testing in writing. If the school district still refuses to test your child, ask for the reasons in writing. If the reasons for refusal are not legitimate, you can file a complaint with the Office of Public Instruction Legal Services (444-4402).

Q: When school started this fall, the principal called and asked me to keep our youngest son home because they hadn't found an aide to work with him yet. My son was crushed that he couldn't go to school when his brother and sister did. Is there something I could have done about this?

A: Your son may not be excluded from school because the school district is not prepared to meet his needs by providing an aide. If this kind of thing happens in the future, make it clear that your son will be attending school. It is the school district's responsibility to provide the services outlined in your son's IEP, including an aide if that is one of his IEP services. The district should also have some kind of backup plan to provide a substitute when the aide is absent. These arrangements are not your responsibility as a parent.

Parent Corner
Items of interest to parents

Newspapers for Foster Kids
Getting Ready is a newspaper designed to help foster children prepare for independent living The materials in the newspaper are written by current and former foster kids. A recent issue focused on transportation issues, such as buying a used car and lowering car insurance bills. Getting Ready is published monthly by Northwest Media, Inc. of Eugene, Oregon. Annual subscriptions are $15. For more information, contact 541-343-0177.

Foster Care Youth United is another newsletter with a broader focus than transitional issues. This newsletter tries to be a voice of youth in foster care. Articles are written by foster kids 14 and older. A recent issue had an interview with drug dealers and a story about getting a first job. Foster Care Youth United is published six times per year by youth Communications, New York. For more information, contact 212-242-3270.

Day Care for Children with Special Needs
Robin Bullinger offers home daycare in Billings for up to six children who have special needs. For more information, contact Robin at 259-3191.

Accessible Congregations Campaigns (ACC)
ACC is an effort to make worship opportunities available to people with disabilities so that they can participate fully in the religion of their choice. So far over 550 congregations nationwide have committed to welcoming people with disabilities into their houses of worship. The goal is to enlist at least 2,000 congregations by the year 2000. Member congregations agree to the following three principles:

• In our congregation, people with disabilities are valued as individuals, having been created in the image of God;
• Our congregation is endeavoring to remove barriers of architecture, communications and attitudes that exclude people with disabilities from full and active participation; and
• People, with and without disabilities, are encouraged to practice their faith and use their gifts in worship, service, study and leadership.

If you would like to help, visit the ACC website at http://www.nod.org/campaign.html or contact Ginny Thornburgh at 202-293-5960 or e-mail to religion@nod.org.

Medicaid Personal Assistance Services
Mike Hanshew of Senior and Long Term Care Division and Maggie Bullock of the Developmental Disabilities Program have announced an effort to preserve the personal assistance program by carefully reviewing the number of hours approved per individual client. Currently the personal assistance program, including the self-direct option, is experiencing a level of growth that exceeds the level authorized by the legislature. Admissions of new individuals to the program are not increasing rapidly but the hours per individual are on the rise. If this rate of increase continues, DPHHS will be forced to reduce the benefits available to all recipients under the program.

In order to forestall any overall reduction in services, Regional Program officers have been asked to pre-authorized admissions to the self-direct option and all services to individuals under the age of 21. Because of this preauthorization process, some individuals may experience a reduction in the hours of service. If you have questions about what is going on in the Personal Assistance program, contact the Developmental Disabilities Program (DDP) for more information (406-444-2095).

Music Therapy: What Is It?
Music therapists assess emotional and physical health, social functioning, communication abilities, and cognitive skills through musical responses. Music therapy has been used successfully with children who have emotional disorders, learning disabilities, brain injuries, physical disabilities and other disabling conditions. Music therapy can be a related service included in an Individualized Education Program (IEP) for a student in special education. For more information about Music therapy, contact American Music Therapy Association, Inc.; 8455 Colesville Rd, Suite 1000; Silver Spring MD 20910; 301-589-3300 or fax: 301-589-5175.

Resource Center for Women with Disabilities
As part of its National Women's Health Information Center, the Department of Health and Human Services has established a new resource center for women with disabilities. The website is http://www.4woman.gov. There is also a hotline that operates from 9:00 a.m. to 6:00 p.m. Call 1-800-994-9662 (voice) or 1-888-220-5446 (TTY).

Assistance with Paying for Telephone Services
Assistance for paying for telephone service may be available to Montana Medicaid recipients through the Montana Telephone Assistance Program (MTAP). MTAP is a cooperative effort among the State, local telephone service providers and the Federal Communications Commission to make local telephone service available to Medicaid recipients. The program provides a 50-percent reduction in the cost of installation and a $10.50 per-month reduction in telephone service costs. Medicaid recipients are eligible; the telephone bill must be in the name of the recipient and is only for single-line residential service. For more information, contact your local telephone company or request an application form: IHSB/MTAP, Box 202956, Helena MT 59620-2956 or call 1-800-332-2272.

Alternative Medicine Resources
The following is a list of books that provide guidance to safe alternative medicines:

Fleming, T., Chief Ed. "PDR for Herbal Medicines" (Montvale NJ: Medical Economics Co., 1998).

Kemper, K.J. "The Holistic Pediatrician: A Parent's Comprehensive Guide to Safe and Effective Therapies for the 25 Most Common Childhood Ailments" (New York: HarperPerennial, 1996).

Lerner, M. "Choices in Healing" (Cambridge, MA: MIT Press, 1994).

Note-Taking Assistance
Hayden-McNeil Publishing has developed a carbonless notebook to help students that require note-taking assistance, or for students, parents, and teachers who need a copy of work. They come in 50 set books (a set is one original and one copy) at a cost of $5.95 and 100 set books for $7.95. For additional information or a sample, contact Hayden-McNeil at 734-455-7900.

AFT on Reading
The American Federation of Teachers (AFT) has released a new publication, "Teaching Reading IS Rocket Science," which details the state of reading failure in the U.S. and proposes a core curriculum for teacher preparation and inservice. To order the publication, send a check or money order for $5.00 to AFT, 555 New Jersey Ave.., NW, Washington DC 20001; ATTN: L. Ellis. Ask for Item No. 372.

LD On-line AT Initiative
LD On-line has announced a new initiative focused on assistive technology for students with learning disabilities. Funded by the NEC Foundation of America, this initiative will provide teachers and parents with information about the latest in computer technology and software to assist LD students to compensate for their disabilities. The LD On-line AT Initiative includes the following services:

TechSurvey: an on-line survey for teachers to help identify the needs of teachers and the barriers to using technology.

TechEval: a quick evaluation tool to help teachers and parents determine the student's need for assistive technology, plus critical information that needs to be considered as part of the technology evaluation process.

TechReview: a series of on-line technology reviews of software, including tips for use with students with LD.

TechTalk: a series of chats with leading experts in the technology field, designed to help teachers and parents understand the potential for technology use.

TechGuide: an on-line guide to assistive technology resources that have been identified as being helpful for students with learning disabilities.

Visit LD On-line at http://www.ldonline.org/ld_indepth/technology/technology.html.

Scholastic News On-line
Scholastic News at http://www.scholastic.com/scholasticnews/ is a companion to Scholastic Newsmagazine, read in hard copy in classrooms across the U.S. by kids in grades 3-6. On-line searchers can click on a picture of the appropriate magazine cover and receive a long list of links to augment the information in the magazine. The links are from other organizations, such as NASA. There are also quizzes and Internet scavenger hunts. A "teacher info" area connects users with other educators across the country.

School Security Web Site
Security Magazine's Web service has started an on-line magazine called School Security Solutions. The site, at http://www.securitymagazine.com/schools/, contains the latest K-12 daily news concerning how to make public schools safe. College Security News, which can also be read at the Website, provides similar information about safety on college campuses. Aside from news, it also contains columns from school security experts as well as other useful information. For more information, contact 847-390-2154 or 947-390-2371.

Information On-line about Home Schooling
Home Schooling and Students in Special Education: Sorting Out the Options for Parents offers several models being used across the country to meet the unique needs of students with disabilities through home schooling. Find it at: http://www.ldonline.org/ld_indepth/parenting/duffey_homeschooling.html.

The Greenwood Institute offers a Home Schooling Support Program for children and adults with dyslexia and related language difficulties. Details available at: http://www.greenwoodinstitute.org/homeschool/virtualbro3.html.

College Financial Aid
The latest version of the popular "Student Guide to Financial Aid" is now available on-line. Be sure to check out the "1999-2000 Student Guide" for the latest information when looking for financial aid for postsecondary education. Available at: http://www.ed.gov/prog_info/SFA/StudentGuide/1999-0/index.html.

ADD Remedies
Check out the personal website of Jason Alster to read his new book on Being in Control. This book touts a holistic approach to meeting the needs of students with attention disorders or deficits. Available at: http://personal.zahav.net.il/PersonalSite/ja/jasona/.

Reading Help
Word Imaging is a method for teaching reading to students who have not learned to reading using standard approaches. For more information, consult the website at http://ww.wordimaging.com or send your questions to: wordimag@enol.com.

International Parent-to-Parent Conference
Nevada will host the 10th biennial Parent-to-Parent Conference in Reno on May 5-7, 2000. For more information and a registration form access http://www.unr.edu/repc/npn/p2p2000/index.html or contact: Nevada University Affiliated Programs, UNR-REPC/285, Reno NV 89557; 775-784-4921.

Montana Child Care Resource Directory

The Montana Child Care Resource directory is a part of Montana's Department of Public Health and Human Services Virtual Pavillion located on the internet at http://vhsp.dphhs.state.mt.us/rot_0.htm .

This site is designed to assist families in evaluating the types of care available, to connect with Child Care Resource and Referral (CCR&R) agencies that offer services to assist families with their child care needs, and to provide preliminary information about child care facilities throughout the state.

Additionally, the site offers information to prospective child care providers regarding child care regulations, how to contact the Child Care Food Program and information about the child care subsidy program which serves eligible low-income families.

Billings Community Lifespan Respite (BCLR)

BCLR is a pilot project to offer a centralized, coordinated approach to the recruitment, training and referral of respite workers and resources. BCLR is available for use by any family seeking respite workers/resources including those dealing with developmental disabilities, mental or emotional problems, foster care or adoption issues, Alzheimer's or senior/long term care needs, substance abuse issues, physical disabilities, chronic illness, domestive violence issues, etc. BCLR respite workers are paid by the family however screening and general training are provided through the project. Call STEP at 248-2055 with your respite needs. There is no charge for using the service.

New Source for ADD Information

CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder) has opened a new ADHD National Call Center to provide information about ADHD. Open weekdays from 8:00 to 5:30 PM EST, the center responds immediately and thoroughly to anyone who contacts via e-mail (national@chadd.org) or the toll-free phone number (800-233-4050). Also available from CHADD: A new guide to ADHD and IDEA, giving vital information on the new definition of the "other health impairment" category in the federal regulations released March 1999. Request the IDEA Guide via the phone number or e-mail above. Also visit http://www.chadd.org.

Free National Lending Library for Open-Captioned Videos

The Captioned Media Program, run by the National Association of the Deaf, provides families of children with deafness or hearing impairment with access to a library of over 4,000 videos with open captioning. Parents can borrow popular children's literature, videos about deaf people, videos on hobbies, computers skills, or even academics. If you have access to the Web, you can search the catalog of titles. You will get a printed lesson guide with each educational video. There are also videos for parents, including a sign language course on tape!

For more information, contact 800-237-6213 (voice); 800-237-6819 (TTY); fax 800-583-5636; e-mail: info@cfv.org; WEB: http://www.cfv.org.

Benefits of Cochlear Implants

The use of a cochlear implant for 35 children with profound hearing loss reduced their reliance on support services at school and significantly increased their chances of being fully included in school, compared with 10 similar children who had conventional amplification (e.g., hearing aids). After the implant device was implanted in the inner ear of the 35 children between ages 2 and 15, they underwent auditory rehabilitation for two years. The implants seemed to increase the development of verbal language which influenced positively the literacy rates and educational performance of the children with implants.

Source: Archives of Otolaryngology, Head and Head Neck Surgery, 125, pp. 499-505, 1999.

Secretin Called Unproven Therapy for Autism

Secretin, regarded as wonder drug by some parents of children with autism, "should be considered unproven and experimental," according to a policy statement from the American Academy of Child and Adolescent Psychiatry.

Interest in secretin was sparked by a 1996 report of a child with autism who reportedly started talking and making eye contact several weeks after infusion of secretin. Secretin is currently approved only for use in the diagnosis of gastrointestinal problems in adults. Clinical studies are underway by the National Institutes of Health and others to determine if Secretin is safe and effective in treating autism.

Despite the lack of research to support the use of Secretin in treatment of autism, there is widespread, uncontrolled use of the drug. The Academy of Child and Adolescent Psychiatry stresses that safety of Secretin in multiple doses has not been tested in clinical trials and that it has not been approved for this use by the Food and Drug Administration. As soon as Secretin has been tested in clinical trials, the FDA plans to fast track its approval if the drug shows both safety and benefit in use with autism.

Antidepressant Discontinuation Syndrome

When an adolescent who has been doing well on antidepressant therapy complains of flulike symptoms, there might be reason to be concerned that the youth is not taking the medication as prescribed. The American Society for Adolescent Psychiatry has identified specific symptoms which occur when an individual abruptly stops taking antidepressants or does not take the medication in the proper amounts or at appropriate intervals.

The antidepressant discontinuation syndrome is a distinctive cluster of acute-onset symptoms associated with withdrawal of any of numerous antidepressants having relatively short half-lives. Symptoms can occur as soon as 1-2 days after skipping even a single dose of certain antidepressants and up to 2 weeks after abrupt drug discontinuation without a tapering off period.

The syndrome is characterized by complaints of fatigue, nausea, insomnia, anxiety, agitation, dizziness or sensory disturbance.

The syndrome is common withdrawal from tricyclic antidepressants and selective serotonin reuptake inhibitors whose half-life is 2-4 days. To avoid withdrawal symptoms, medications should be taken as prescribed. If an adolescent is to change medications or stop taking an antidepressant, there should be a gradually tapering off of dosage to avoid unpleasant flu symptoms.

Alzheimer's Drug May Help Improve Language Skills

A recent study done at Duke University Medical School indicates that the drug Donepezil (usually used to treat dementia in individuals with Alzheimer's) may help improve the ability of people with Down syndrome to communicate. Within the first four months of treatment with the drug, four patients, aged 24-64 years, used more expressive language, had increased attention spans and experienced more stable moods. With only four participants, the study was small but the results are so promising that the researchers feel a larger, randomized study is warranted. The results of the study were published in the British medical journal, the Lancet.

Equity for Young Women with Disabilities

The Montana Center on Disabilities has been awarded a model project to increase gender equity in employment and career preparation provided to young women with disabilities. The project staff is currently forming an Advisory Board for the Equity for Women with Disabilities project and are seeking parents of young women with disabilities to serve on the board. Anyone interested in the project may contact Marsha Sampson at the Montana Center.

Montana Center on Disabilities

MSU-Billings

1500 N 30th St

Billings MT 59101

1-888-866-3822

406/657-2313 (fax)

http://www.msubillings.edu/mtcd/

mcd@msu-b.edu

Disability Information for Parents: Tourette Syndrome (TS)

Tourette syndrome is a much misunderstood disorder that causes symptoms that are difficult to explain to others. Prior to scientific information being available about the disorder, people with TS were thought to have a psychological or even a "spiritual" disorder. Fortunately, today Tourette syndrome is known to be a physical, neurological disorder of the brain and nervous system which causes involuntary movements (motor tics) and involuntary vocalizations (vocal tics).

Motor tics can occur in any part of the body, and include eye blinking, facial grimacing, shoulder shrugging, head jerking, and hand movements. Common vocal tics include throat clearing, sniffing, making loud sounds, grunting, or saying words. Both motor and vocal tics may occur many times a minute, or only a few times a day. They may be so mild as to be barely noticeable, or so severe as to be highly distracting or tiring.

Tics begin before the age of twenty-one, most often around the age of seven. Over the course of time, tics may change in location, frequency, and severity, but they usually last a lifetime. Symptoms must be present for at least a year for a diagnosis of Tourette syndrome to be made.

Like other syndromes, Tourette syndrome is diagnosed on the basis of the symptoms it produces, not with a specific diagnostic test. Both motor and vocal tics must be present for the diagnosis of Tourette syndrome to be made, but there are also a variety of other symptoms that may be present.

Associated Disorders

Attention Deficit Disorder with or without Hyperactivity. An attention deficit disorder is a neurological condition that makes it more difficult for a child to focus attention, control impulses, and behave appropriately. About half of all children with TS also have attention deficit disorders. Symptoms of ADD may include fidgeting; being unable to stay seated; being distracted by sights, sounds or smells; having difficulty waiting or delaying gratification; blurting out answers; having difficulty following instructions; having trouble sustaining attention; shifting activities frequently; having difficulty being quiet; talking excessively; interrupting or intruding on others; appearing not to listen; losing things; and taking physically dangerous risks.

In children with TS, symptoms of attention disorders often appear before motor or vocal tics do. The ADD symptoms may be noticeable by age four or five, but the tics do not appear until age seven or later. The stimulant medications which are used to treat ADD symptoms and improve concentration may actually have the effect of hastening the appearance of tics or making tics worse in children who have TS. But taking stimulant medications does not cause TS; the medication may simply bring out the tic symptoms earlier than they would otherwise have appeared.

Learning Disabilities. Some children with TS have difficulty processing incoming sensory information or stimuli. They may be over or under sensitive to input from one or more of their senses, or be unable to use sensory information efficiently. For example, they may overreact to touch (e.g., tactile defensiveness), and consequently be distressed by the feel of certain fabrics or objects on their skin or the texture of certain foods in their mouths. Or they may have difficulty telling where parts of their body are in space, and therefore appear clumsy. These sensory problems can contribute to problems with speech, muscle development, learning to read, or calculate.

Even though most children with Tourette syndrome have average or above average intelligence, they are more likely than children without TS to have learning problems. In fact, about one-third have specific learning disabilities--delays or difficulties in learning one or more specific types of information. They may, for example, have greater than usual difficulty with reading, handwriting or mathematics. They may also have problems with auditory processing as in spoken directions.

Tics, distractibility, or obsessive-compulsive symptoms can also contribute to learning problems. For example, eye blinking or head jerking can impede reading; hand movements can make writing impossible. Medications used to control tics can also interfere with learning or memory, or make children too sleepy to pay attention in class.

Obsessive Compulsive Disorder. About 50 percent of children with TS have obsessive-compulsive (OC) symptoms. Examples of OC behavior included insisting on wearing clothing of a certain color or made from a certain type of fabric; repeatedly checking that doors are locked; always having to be first in line or sit in the same place; or erasing a sentence over and over in an effort to get the letters perfect.

An obsession is a thought, idea, impulse, or image that, at first, seems intrusive or senseless to the person experiencing it. These obsessions are experienced as a product of the person's mind as opposed to hearing voices from the outside. A compulsion is a repetitive behavior (thought or action) designed to stop the obsession, reduce anxiety, keep a dreaded event from occurring, or prevent discomfort. Examples include placing objects just right, smelling things, or touching things a certain number of times.

People with OC behaviors usually are aware of the bizarre nature of their obsessions and compulsions, but they cannot stop repeating them because not responding to the compulsions creates extreme, unbearable anxiety.

Sleeping Problems. Sleep problems are common in children with TS. Some children are unable to fall asleep because of their OC symptoms, not being able to rest until everything is "just right." Other children become extremely hyperactive as they get physically tired and cannot relax enough to fall asleep. Still others sleep during the day because of the drowsiness brought on by side effects of medications and then cannot sleep at night because they are not tired.

Mood Swings, Anxiety, or Temper Outbursts. For 25 to 35 percent of children with TS, controlling tantrums, moods and aggressive behavior is a problem. These children may appear to have a "short fuse" and get into fights for little or no reason. They may attack other people or destroy property without any particular reason or turn their aggression on themselves, perhaps by impulsively punching a wall. After the outbursts are over, the children usually greatly regret their explosive outbursts. Between outbursts they can be reasonable and quite aware of what behaviors are appropriate and inappropriate.

Causes of Tourette Syndrome

For many years, TS was believed to be the result of underlying character defects or psychological problems. Neither of these assumptions is accurate. Results of current research indicate that TS has a biological base related to the brain chemical dopamine and perhaps other neurotransmitters in the brain.

In the late 1970s, researchers also discovered that Tourette syndrome is a genetic disorder caused by an alteration in the normal makeup of the genes. As with other genetic disorders, the predisposition to develop Tourette syndrome is passed on within families, from one generation to the next. When one parent has the Tourette syndrome gene, each child he or she has will have a 50 percent chance of inheriting the vulnerability for Tourette syndrome. All children who inherit the TS gene do not go on to develop the syndrome. For reasons that are not fully understood, about 30 percent of girls who inherit the gene do not have any symptoms at all, whereas the figure for boys is only 1 percent. In general, boys are more likely to have tics, and girls are more likely to have obsessive-compulsive symptoms. Both boys and girls, however, can have any of the symptoms of Tourette syndrome, in any combination, and in any degree of severity.

Although Tourette syndrome is usually due entirely to genetic causes, sometimes it may be caused by other factors. For example, brain damage resulting from disease, lack of oxygen or prenatal problems may also be involved in causing TS.

If parents already have one child with Tourette syndrome, any other children will have a fifty-fifty chance of inheriting the TS gene. Any daughters that inherit the gene will have a 70 percent change of developing symptoms; any sons, a 99 percent chance.

Treatment

Although there is no known cure for TS, most people with the disorder can be helped through acceptance, understanding, and various methods of intervention, including medications and modifications. The following are medications commonly used to alleviate TS symptoms:

Medications for Treatment of Motor Tics: Klonopin, Catapres, Prolixin, Haldol, and Orap

Medications for the Treatment of Associated Behaviors of TS: Tricyclic Antidepressants: Norpramin, Tofranil, and Pamelor

Antidepressants and Anti OCD: Nafranil, Prozac, and Zoloft

Attention Stimulant Medications: Dexedrine, Ritalin, and Cylert.

Management of medications used to treat the symptoms of TS is very tricky because curbing some symptoms with one type of medication may cause a worsening of other TS symptoms. For example, Ritalin can be used to treat the ADD symptoms that occur with TS, but taking Ritalin may cause some children to have a worsening to tics. Because managing the medications is so complex, most children with TS need to be in the care of child psychiatrists or other physicians who have experience in treating TS symptoms.

Tips for Parents

• Inform teachers and other school personnel of the child's TS diagnosis. Provide videos for staff to watch so they can see firsthand what TS symptoms look like.
• Inform classmates about TS. Provide children's books with additional information about TS.
• Set goals for school based on what your child can usually do, not on what he or she can do on the best days. This is especially important because of the waxing and waning of TS symptoms.
• Encourage flexibility. Be sure that teachers adjust the work load for your child so that less is demanded on difficult days.
• Pay attention to positive behaviors and use positive reinforcement whenever possible.
• Be sure that your child's teachers know that stress often causes tics to become more frequent or pronounced. For example, taking tests, giving a speech, or being teased or punished may cause tics to increase.
• Make sure that your child gets plenty of physical exercise. Engaging in sports or music activities may reduce stress and thus reduce tics.
• Make it clear to all adults who work with your child that tics wax and wane and TS symptoms do change over time, but that this does not mean that the tics are under your child's control.
• Inform adults that asking your child to suppress tics, may increase the child's stress and thus increase the tics. The less attention drawn to the tics, the better.
• The general rule for motor and vocal tics is to ignore them. Teachers should not encourage or reward your child for not having tics, as this may encourage the child to try to suppress them and become upset when the tics can't be controlled. Instead, teachers should provide a place for your child to go to release tics when necessary.
• Children with mental tics--repeating words, numbers or phrases to themselves--should be given extra time to respond to questions or to complete assignments.
• Children with TS are often overwhelmed by school assignments. They benefit from having assignments broken down into shorter segments.
• When children with TS reach early adolescence, they usually experience the worst increase of their tics. It is sometimes advisable to consider "sheltering" these children in school during this period by placing them in self-contained classes temporarily so they do not have to deal with changing classes and adjusting to several teachers and groups of students. In late adolescence, the tics usually diminish in severity, so children with TS can do well in a regular high school environment.

The TRIC/PLUK Library has a great deal of information about TS, including books, videos, and other materials. Information is available for the children themselves, for parents and teachers, and for health professionals. Call 1-800-222-7585 and ask our librarian for assistance or e-mail triclibrary@pluk.org.

HONOR ROLL

The following educators have earned a place on the PLUK Honor Roll for their exemplary service to children with special needs. These individuals have been nominated for honor roll status because they have gone the extra mile for a student or students who needed special help to do well in school. Below each name is a quote from the letters of nomination.

Ray Pellant, High School Resource Teacher, Forsyth

"Mr. Pellant takes his job very seriously. He gets to know every student very well and sees the positive side of each one. Mr. Pellant works hard to think of ways that students can prepare themselves for transition. For a lot of students, Mr. Pellant is the one who helps them believe in themselves."

If you know of an educator who deserves to be on the Honor Roll, send your nomination to PLUK, 516 N 32nd St, Billings MT 59101 or e-mail to plukinfo@pluk.org. Those recognized on the Honor Roll have their names published in PLUK News and receive an Honor Roll certificate and a personal thank you note from PLUK.

What's New in the TRIC/PLUK Library??

The following are recent additions to the library ordered by subject area. If you are interested in checking out any materials, please call the librarian, Janice Sand at 255-0540, 1-800-222-7585 (tollfree in MT) or e-mail jsand@pluk.org. Materials will be mailed out anywhere in the state of Montana at no charge.

• Obsessive compulsive disorder A survival guide for family and friends; Cohen, Roy
• Tormenting thoughts and secret rituals The hidden epidemic of obsessive-compulsive disorder; Osborn, Ian, M.D.
• ADD nutrition solution A drug free thirty day plan; Zimmerman, Marcia, C.N.
• Be my friend;
• Beyond Ritalin Facts about medication and other strategies for helping children, adolescents, and adults with attention deficit disorders; Garber, Stephen W., Ph.D. Garber, Marianne Daniels, Ph.D. Spizman, Robyn Freedman
• Driven to distraction Recognizing and coping with attention deficit disorder from childhood through adulthood; Hallowell, Edward, M.D. Ratey, John J., M.D.
• Acting out child Coping with classroom disruption SECOND EDITION; Walker, Hill M.
• Self-control classroom Understanding and managing the disruptive behavior of all students, including those with ADHD; Levin, James Shanken-Kaye, John M.
• Tough kid book Practical classroom management strategies; Rhode, Ginger Jenson, William Reavis, Kenton
• Tough kid tool box; Jenson, William Rhode, Ginger Reavis, Kenton
• David's story A book about surgery; Brink, Benjamin
• How to handle bullies, teasers and other meanies A book that takes the nuisance out of name calling and other nonsense; Cohen-Posey, Kate, M.S.
• Kids like me Children's stories about obsessive compulsive disorder; Foster, Constance H.
• One TV blasting and a pig outdoors; Abbott, Deborah Kisor, Henry
• Rolling along with Goldilocks and the three bears; Meyers, Cindy
• Somebody called me a retard today and my heart felt sad; O'Shaughnessy, Ellen
• Why does that man have such a big nose?; Quinsey, Mary Beth
• Reaching out to children with FAS/FAE A handbook for teachers, counselors, and parents who work with children affected by FAS and FAE; Davis, Diane
• Dangerous schools What we can do about the physical and emotional abuse of our children; Hyman, Irwin A., Ed.D. Snook, Pamela A., RN, MSN
• Supervising paraeducators in school settings A team approach; Pickett, Anna Lou Gerlach, Kent
• Epilepsy The facts SECOND EDITION; Hopkins, Anthony Appleton, Richard
• What about me? Growing up with a developmentally disabled sibling; Siegel, Bryna, Ph.D. Silverstein, Stuart, M.D.
• Missing words The family handbook on adult hearing loss; Thomsett, Kay Nickerson, Eve
• Inclusion a fresh look Practical strategies to help all students succeed; Tilton, Linda
• What's going on in there? How the brain and mind develop in the first five years of life; Eliot, Lise, Ph.D.
• Facing learning disabilities in the adult years Understanding dyslexia, ADHS, assessment, intervention, and research; Shapiro, Joan Rich, Rebecca
• It's OK to learn differently; Cody, Corinne
• No easy answers The learning disabled child at home and at school REVISED EDITION; Smith, Sally L.
• Overcoming dyslexia in children, adolescents, and adults SECOND EDITION; Jordan, Dale
• Succeeding against the odds How the learning disabled can realize their promise; Smith, Sally L.
• Upside down kids Helping dyslexic children understand themselves and their disorder; Levinson, Harold N., M.D.
• Guide to consent; Dinerstein, Robert D.; JD Herr, Stanley S., JD; Phil O'Sulllivan, Joan L., JD
• Coping with your child's chronic illness; Singer, Alesia T. Barrett, M.a.
• Hydrocephalus A guide for patients, families, and friends; Toporek, Chuck; Robinson, Kellie
• Barbara and Fred grownups now Living fully with developmental disabilities; Moise, Lotte
• 1-2-3 magic Effective discipline for children 2-12 2nd EDITION; Phelan, Thomas W.
• Building assets in youth The power of positive youth development; Benson, Dr. Peter L.
• Bullies and victims Helping your child through the schoolyard battlefield; Fried, SuEllen, A.D.T.R. Fried, Paula, Ph.D.
• Grounded for Life?! Stop blowing your fuse and start communicating with your teenager; Tracy, Louise Felton, M.S.
• Taming the dragon in your child Solutions for breaking the cycle of family anger; Eastman, Meg, Ph.D. Rozen, Sydney Craft
• Special camp guide A directory of camps and summer programs for children with special needs 1999;
• Good friends are hard to find Help your child find, make and keep friends; Frankel, Fred, Ph.D.
• Teaching friendship skills: Intermediate version Affective/Social Skills: instructional strategies and techniques.; Huggins, Pat; Moen, Larry; Manion, Donna Wood
• Teaching friendship skills: Primary version Affective/social skills: instructional strategies and techniques; Huggins, Pat; Moen, Larry; Manion, Donna Wood
• Tough kid social skills book; Sheridan, Susan, Ph.D.
• Why don't they like me? Helping your child make and keep friends; Sheridan, Susan M., Ph.D.
• Meeting the needs of youth with disabilities Examples of students with disabilities accessing SSI work incentives;
• Book of possibilities: Elementary Edition Activities using simple technology; Canfield, Helen, M.A., CCC/SLP; Peggy Locke, Ph.D.
• Breaking barriers REVISED EDITION How children and adults with severe disabilities can access the world through simple technolgy; Levin, Jackie, M.A.; Scherfenberg, Lynn, R.P.T.
• Enable people with disabilities and computers; Flying Karamazov Brothers
• Family guide to assistive technology;
• Fun for everyone A guide to adapted leisure activities for children with disabilities; Levin, Jackie, M.S.; Enselein, Kathy,B.S.
• Funding of assistive technology The public school's special education system as a funding source: the cutting edge;
• Medicare and AAC devices Funding augmentative and alternative communication devices through Medicare;
• Developing transition plans; Wehman, Paul
• Ensuring access, equity, and quality for students with disabilities in school to work systems A guide to Federal law and policies;
• Self-determination strategies for adolescents in transition; Field, Sharon Hoffman, Alan Spezia, Shirley
• Transition from school to young adulthood Basic concepts and recommended practices; Patton, James R. Dunn, Caroline
• Broken toy;
• Confidentiality in a community based setting;
• Dealing with peer pressure I made my choice;
• Differences between strangers, acquaintances, and friends Relationship Series: Part I Tape 1;
• Educating Peter From mainstreaming to inclusion;
• Enjoying your sexual life Relationship Series: Part III Tape 1;
• Fast ForWord: a demonstration;
• Gentle supervision III Coaching and correcting staff; McGwin, Kathleen
• Goals for success Writing IEPS that work;
• Having a good relationship Relationship Series Part II: Tape 3;
• Interviewing skills for job candidates with learning and other hidden disabilities;
• Interviewing skills for job seekers with physical disabilities A five point strategy for successful interviewing;
• Learning characteristics of people who are mentally retarded; McGwin, Kathleen
• Make the right move The apartment rental game;
• Positive behavior;
• Profiles in aging and vision;
• Small differences A children's disability awareness production;
• Starting a special relationship Relationship Series: Part II Tape 1;
• Structured learning time: Physical exercise I; Nelson, Ann, TRS
• Talking with people who are mentally retarded and nonverbal; McGwin, Kathleen
• Team Xtreme;
• Training for job success An employer's guide to training new employees with developmental disabilities; Courter, Kristi
• Transporting passengers in a van; Faltersack, Ruthann Horn, Connie
• TRIP translating research into practice Learning strategies: social skills; Lovitt, Tom; Fister, Susan; Freston, Janet; Kemp, Karen
• Understanding and preventing client abuse and neglect; Faltersack, Ruthann
• Working out problems in your sexual relationship Relationship Series: Part III Tape 2;
• Worth the trip Raising and teaching children with fetal alcohol syndrome ;
• Brailleways;
• Skills for success A career education handbook for children and adolescents with visual impairments; Wolffe, Karen E., Editor
• Career counseling for people with disabilities A practical guide to finding employment; Wolffe, Karen E.
• Teaching occupational social skills; Elksnin, Nick; Elksnin, Linda

Looking for a Good Deal on a Computer System in Montana?

Western Office in Billings is offering our readers of PLUK News a special on a Windows '98 computer system. The specifications of the systems are as follows:

• Micro PC AMD K6-2 350 Mhz
• 4.3 Gbyte Hard Drive
• 100 Mhz ATX Motherboard w/ISA & PCI expansion
• 64 Mbyte PC100 RAM
• 8 Mbyte shared Video RAM
• 3D Sound
• 56K V.90 Modem
• 45X CD-ROM Drive
• 3.5" 1.44 Floppy Drive
• Speakers
• Keyboard
• Mouse
• Windows 98
• 14 inch color monitor

The price on this system is $798 or $640 without a monitor. The computer has a one-year warranty and the monitor is three years. These systems do not include any extra software except for Windows.

Western Office

PO Box 1822

Billings MT 59102-1822

406/245-3029

406/245-3020 (fax)

Looking for an iMac?

PLUK is a Macintosh User Group and any one of our readers may purchase items on the internet at the Macintosh User Group Store at:

http://www.applemugstore.com/

login = eukanuba
password = yummy

You may purchase items such as a refurbished iMac for $898. When ordering, just mention you are a member of Parent's Let's Unite for Kids (PLUK).

Unlimited Internet Access at $10 per Month

If you live within the local calling areas of Billings, Bozeman, Butte, Great Falls, Helena, Kalispell, Missoula or out-of-state in Bismark ND or Casper WY, and cannot afford Internet access at commercial rates, Touch America is providing unlimited internet access accounts to families at $10 per month. Requests for accounts must be made through PLUK, Touch America representatives will not know about the special rate.

To apply for a PLUK Special Rate Unlimited Internet Access Account, please write, fax or e-mail our office. Please, DO NOT CALL PLUK or Touch America about this offer.

Write to:

PLUK Special Rate Internet Accounts

516 N 32nd St

Billings MT 59101

Fax to:

406/255-0523

E-mail to:

plukinfo@pluk.org

Please include the following information in your letter, fax or e-mail:

1. Name
2. Billing Address, City, State, Zipcode
3. Telephone number
4. Account Logon (up to 8 letters/numbers)
5. Account Password (up to 8 letters/numbers)
6. Type of computer you will be using (Mac or Windows)
7. Computer Operating System Version (Windows 3.1, Windows 95, Windows 98, Mac OS 7.5, Mac OS 8.6, etc.)
8. Write an explanation of why you need a special rate internet access account.

You will be notified within two weeks whether you will be receiving a special rate account. Touch America will send out a package containing software and instructions for setting up your computer. Billing for the service will come directly to you from Touch America.

What is PLUK?

PLUK is a statewide, self-help organization of parents reaching out to other parents.

The philosophy of PLUK is that there is no one right way to be a good parent -- but through self-help services that increase knowledge, parent-to-parent contacts that model and share skills, and mutual problem solving, parents can discover, use, and appreciate their own personal coping skills.

Who Should Call?

• Parents of children with special needs, chronic illnesses, or disabilities.
• Parents of children with emotional or behavioral problems.
• Parents needing encouragement and moral support from other parents.
• Family members and friends of persons with special needs.
• Individuals with disabilities or chronic illnesses.
• Professionals in medical, educational or human service fields.

What Services Does PLUK Offer?

Information

• State-of-the-art special needs library
• A bimonthly newsletter
• Referral to medical, educational or human services
• Training in parenting, communication and advocacy skills
• Computer lab with adaptations for people with special needs
• Assistance in seeking financial resources

Support

• Individual assistance and emotional support
• Trained advocates
• Mediation and conflict resolution
• Referrals to parent support groups
• Parent-to-parent contacts

Where Is PLUK?

PLUK's services are available to individuals and families throughout Montana. The main office, library and computer lab are located at 516 N 32nd St in Billings and satellite offices are located around the state.

When Is PLUK Open?

The PLUK central office is open 8:00 a.m. to 5:00 p.m., Monday through Friday. After hours, incoming calls are recorded on voice mail and responded to the next business day.

Is There a Cost For PLUK Services?

All PLUK's services are free to individuals with disabilities and their families.

How can I get in Touch?

Stop in at the main office in downtown Billings. Call us at 406/255-0540, 800-222-7585 (tollfree), or 406/255-0523 (fax). E-mail at plukinfo@pluk.org. Or, visit our web site at http://www.pluk.org.

PLUK Publications

The following publications have been produced by PLUK and are available through the main office in Billings.

Call 406/255-0540,

800-222-7585 (tollfree in MT),

406/255-0523 (fax),

plukinfo@pluk.org (email), or many of the publications may be viewed in text format on our web site at http://www.pluk.org.

Booklets

• First Steps A Parent Information Handbook: Infant and Toddler Programs/ Preschool Special Education Programs
• Parents' Guide to the Special Education Process
• Achieving Integration for Children with Disabilities
• Self Sufficiency Trust of Montana Donor and Attorney Handbooks
• Family Guide to Assistive Technology
• Parents Guide to Transition: What Happens After High School?

Videos

• Transition: Pathways to a Bright Future, Length: 22 minutes - Close Captioned
• Goals for Success: Writing IEPs That Work!, Length: 17 minutes - Close Captioned
• On the Way to Success: Positive Approaches for Improving Behavior, Length: 30 minutes - Close Captioned

PLUK Facts

• Parents, Let's Unite for Kids (PLUK) has been in existence since 1984.
• PLUK was founded by parents who felt strongly that parents of children with disabilities need to band together to give each other information and support. It seemed foolish for each new parent to try to learn all over again what other parents already know and would willingly share. It also seemed important for parents to lend each other support because of the healing that takes place when people who share a common problem can work together to find solutions.

Who We Are

• We are people with disabilities, parents, professionals, relatives, and friends who want to assure that persons with disabilities participate in the community and have access to high quality educational, medical and rehabilitation services.
• We are members of a statewide group that supports families in their desire to help people with disabilities lead productive lives.

What We Do

• We become as well informed as possible about best practices in the fields of education, medicine, the law, human services, rehabilitation and technology so that we can insure that our family members and friends with disabilities have access to high quality services.
• We willingly share information and emotional support with each other so that together we are stronger in our efforts to meet the challenges of disabilities and illnesses.

Values We Share

• Full integration and participation of children and adults with disabilities at school, work, and in the community.
• Support for families so that they can nurture their children in the home.
• Empowerment of families and individuals with disabilities to make decisions about their lives.
• Individualization of services to meet the unique needs of individuals with disabilities.
• Access for persons with disabilities to education and technology needed to participate fully in community life.
• Age appropriate activities for children and adults with disabilities.
• High expectations for individuals who are challenged by disability or illness.
• Collaborative efforts among parents, professionals and people with disabilities.
• Use of language about people with disabilities which is respectful and recognizes their dignity and rights as full citizens.

PLUK Training Workshops

Parents who receive training are better able to make their case with the school and are more likely to achieve results which are helpful for their child. If you are interested in receiving training contact PLUK and ask for a training session at 255-0540, 1-800-222-7585 (tollfree in MT) or e-mail plukunfo@pluk.org.

• Conflict Resolution--In All Things Generosity: An Advanced Conflict Resolution Workshop for Parents-- to assist parents and school staff to avoid conflict or settle conflicts when they arise.
• Individuals with Disabilities Education Act: What a Great IDEA! Parents' rights and responsibilities under the special education law and Section 504.
• How to Be Heard and Understood. Communication skills for parents advocating for their children.
• Parent/Professional Partnership. A team building workshop designed to help parents and professionals work together to develop high quality individualized education programs.
• Pilot Parents. Advanced training in listening skills and individual assistance for experienced parents who wish to volunteer to help new parents.
• First Steps: A Workshop for Parents of Preschoolers with Special Needs. Describes the publicly supported services in Montana that are available for children from birth through age six.
• Including Children with Disabilities. Provides legal and practical information about how children with disabilities can be fully included in schools.
• Stress: A Four-Part Series on Stress Reduction. Focuses on the feelings parents experience when they learn that their child has a disability and empowers participants to take action to alleviate sources of their stress.
• What is ADD and What Can We Do About It?. Provides basic information about attention deficit disorder and makes suggestions about how to help children with attention deficit be more successful at home and at school.
• Transition: Growing Up and Moving On. Explains how to plan for the transition of a young adult with a disability from home and school into adult living in the community.
• The Almost Easy IEP. Helps parents prepare to participate in writing their child's
• IEP Rap Sessions. Provides suggestion for IEPs that parents bring to the training session.
• Successful Secondary IEPs. Assists parents in understanding the differences in writing IEPs at the high school level.

End of the PLUK NEWS August/September 1999

Copyright © 1999 Parents, Let's Unite for Kids, all rights reserved.