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PLUK News December 1999/January 2000 Volume 14 Number 5/6
	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 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

IDEA 1997 Gives Parents New Rights New Director of OSEP Clinton Signs Work Incentive Bill Safe Schools Website Good News for MSST Head Start Helps Students w/Disabilities & Discipline DD Services More Flexible Standard-Based IEPs on the Way New Grolier Encyclopedia Taxes, Taxes, Taxes ASK PLUK??? AlphaSmart 3000 Coming Parent Corner Support Services at Postsecondary Research on Test for ADHD Brain Scans and ADD Diagnosis Dyslexic Kids Brains Work Harder

Brain's Moral Compass Located What Can a Parent do about Bullying? Fighting Depression with Implants Genetic Test for Rett Syndrome Maternal Risk Factor and Down Syndrome First Secretin Study Published Parent Links - to the WWW Partners in Policymaking Program PASS Plans for Students MYLF for Students with Disabilities HONOR ROLL What's New in the TRIC/PLUK Library? Ways to Help PLUK Looking for an iMac? Unlimited Internet Access at $10/month What is PLUK? PLUK Publications PLUK Facts

Support Group for families of individuals with Special Needs in the Great Falls and surrounding area

Where: Chief Joesph School, 5305 3rd Ave South, Great Falls.

When: The 1st Monday of each month starting Feb 7, 6:30-8:30pm

• Children's activity group will meet in the Chief Joesph gym.
• The Adult Support Group will meet in the Chief Joesph library.
• Any questions or info call Bobbie or Valerie at 452-9531

This is a collaborative effort between Benefis Pediatric Therapists, Great Falls Public Schools, North Central Independent Living Services, PLUK, and Quality Life Concepts.

Strategies for Preschool Intervention in Everyday Settings

SPIES, a teaching effectiveness curriculum currently available in the PLUK library, has been reviewed and recommended by the Culturally and Linguistically Appropriate Services Early Childhood Research Institute at the University of Illinois at Urbana-Champaign in August 1999.

Y2K Holiday Technology Giveaways

If you are interested in any of the items listed, please write, fax or e-mail the PLUK office(plukinfo@pluk.org), please DO NOT CALL.

1. Oregon Trail II CD-ROMs for Mac or Windows

2. Computer systems to give away:

These are old PC systems without printers, CD-ROMs or sound cards. Processors range from 286-486 vintage. All systems have at least a word processing program. Operating systems include DOS, Windows 3.1 & Windows 95. Some may be useable for internet access.

3. Computer systems available for long-term loan:

These are old color Macintosh systems with printers and children's software, way too slow for internet access. Good as a starter system for young children.

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:

Emmy Hayworth, Colstrip - ehayworth@pluk.org
Deb Tomlinson, Great Falls - dtomlinson@pluk.org
Kathy Kelker, Billings - kkelker@pluk.org
LeeAnn Logan, Billings - llogan@pluk.org
Molly Mills, Early Intervention - mmills@pluk.org
Anne Galasso, Butte - agalasso@pluk.org
Nancy Staigmiller, Absarokee - nstaigmiller@pluk.org
Virginia DeLand, Missoula - vdeland@pluk.org
Mary Lerner, Kalispell - mlerner@pluk.org

Jan Duffy, Finances - jduffy@pluk.org
Roger Holt, Technology Support - rholt@pluk.org
Rebecca Johns, Head Start - rjohns@pluk.org
Angus Macdonald - amacdonald@pluk.org
Audrey Mauritzson - amauritzson@pluk.org
Janice Sand, Librarian - jsand@pluk.org

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

IDEA 1997 Gives Parents New Rights

From its inception, the federal special education law has afforded parents of children in special education with the right to participate as an equal partner in the education of their children. The revisions of the law in 1997 further clarified the rights of parents, including the following--

• The right to participate in IEP meetings;
• The right to notice of such meetings;
• The right to invite to IEP meetings others with knowledge or specific expertise regarding the child;
• The right to be informed of the student's progress;
• The right to give and revoke consent when consent is necessary (e.g., assessment, eligibility, placement, content of the IEP);
• The right to an independent evaluation at the school's expense;
• The right to notice regarding the initiation or change of identification evaluation or placement; and
• Notice of all procedural safeguards.

Under IDEA '97, schools should make every effort to include parents as equal partners in decisions concerning identification, evaluation, placement and the provision of FAPE unless the parent does not wish to be included in the process. A very helpful explanation of the regulations concerning parent participation is in Appendix A to the IDEA regulations. This information is available on the PLUK website at http://www.pluk.org/appa.htm.

New Director of OSEP Named

The U.S. Department of Education's Office of Special Education Programs (OSEP) has named Kenneth Warlick, a former state education official, to be the new director of OSEP. Dr. Warlick, who was the associate commissioner of the Kentucky Department of Education, replaces Thomas Hehir.

Warlick, appointed on December 1, 1999, took office on January 3, 2000. He oversees a $5.3 billion budget supporting the federal commission to special education in public schools.

While in Kentucky, Warlick designed a plan to improve relations between the state education department and various child-parent advocacy groups. He also helped lead an effort to revise the special education code to clearly distinguish between best practices and legal mandates. This delineation between best practices and legal requirements has become a significant issue for state directors who want to distinguish between what state government has to do in special education and what is a "good thing to do" if the funding is available.

Since leaving Kentucky state government in 1998, Warlick has been at the University of Kentucky as the director of the Inclusive Large Scale Standards and Assessment Group, a division of the school's Interdisciplinary Human Development Institute. In that position, he headed work on alternate assessments for special needs populations.

Clinton Signs Work Incentive Bill

On December 17 at the FDR Memorial in Washington, President Clinton signed into law the Ticket to Work and Work Incentives Improvement Act of 1999, landmark legislation that enables millions of Americans with disabilities to join the workforce without fear of losing their Medicaid and Medicare coverage. The legislation will also modernize the employment services system for people with disabilities and extend tax provisions for working families, education, the environment, and scientific research. The President praised the strong bipartisan efforts of Senators Jeffords, Kennedy, Roth, and Moynihan, and Congressmen Lazio, Waxman, Bliley and Dingell in passing this historic legislation and directed his Cabinet to move swiftly to implement the Act.

Safe Schools Website

The Office of Public Instruction (OPI) has set up a "Safe Schools" site on OPI's homepage. The site has received some very positive comments from school administrators who have used the site for information and resource referrals. To access the Safe Schools site, go to OPI's homepage at http://www.metnet.state.mt.us and click on the Safe Schools icon. OPI contacts are Spencer Sartorius (444-4434, ssartorius@state.mt.us) or Rick Chiotti (444-1963, rchiotti@state.mt.us).

Good News for MSST

Davidson Trust Co., the investment management agency for the Montana Self-Sufficiency Trust (MSST), has entered into a new agreement with MSST in order to make participation easier for families. A new fee schedule has been established which makes the management fee paid to Davidson 1% of the market value of each individual MSST Trust. The market value of all the individual trusts will be combined and the base fee calculated on the aggregate total. A base fee of $500 will be added and the total fee will be allocated to each individual account based on its proportionate share of the total. There will be no minimum fee applied to each individual account as previously quoted. For example, the annual fee on an account with a market value of $1,888.31 would only be approximately $19. In the past, the minimum fee for any size of account was $250. With this new arrangement small accounts will be levied fees that could be much smaller than $250 annually.

To open a new account , the minimum initial deposit to fund an MSST Trust must be no less than $2,000.00 and the initial set up fee to Davidson Trust is $100. PLUK also charges an initial fee of $100 to process the paperwork involved. Thus to start an account, a donor would have to pay $100 to Davidson Trust and $100 to PLUK. The minimum deposit to open an account would be $2000.000 for a total outlay of $2,200.

Davidson Trust is also creating a broader array of investment opportunities by adding the following funds as investment options for the Trust Advisor:

-- Federated Managed Income N. 355

-- Federated Managed Growth N. 360

-- Federated managed Aggressive Growth N. 376

These will be in addition to the Federated Managed Growth and Income, No. 357, which previously has been the only investment option for MSST accounts. With the new options, Trust Advisors can choose from an array of conservative to aggressive funds, depending on the needs of an individual account beneficiary.

With the new Davidson agreement, Davidson will be providing account reports less often, going to a semiannual reporting schedule on June 30 and December 31 instead of the previous schedule of quarterly reports.

PLUK will be revising the MSST Handbooks (Donor and Attorney) and trust documents to reflect these changes. The revised handbooks should be available in March. Holders of existing accounts will receive their copies of the revised handbooks before the handbooks are available to the general public.

Montana is unique in providing a mechanism for parents to provide financially for their children with disabilities without jeopardizing their children's eligibility for government benefits like Supplemental Security Income (SSI) and Medicaid. This mechanism--the Montana Self Sufficiency Trust (MSST)--, was established by Montana law to set aside money to benefit a person with a lifelong disability by supplementing the government-funded benefits for food, shelter, supervision, or medical care. Any questions regarding management of SST Account investments should be addressed to Davidson Trust Co. at 1-800-634-5526. Copies of the Montana Rules governing the Self Sufficiency Trust are available by calling PLUK at 1-800-222-7585.

Head Start Helps

Eighty-six percent of the nation's police chiefs say expansion of Head Start and after-school child care programs will help curb youth crime and violence. The survey from Fight Crime: Invest in Kids found these prevention programs more popular among police chiefs than metal detectors or even more police officers. Overall, nine of 10 police chiefs agreed with the statement that the nation will "pay far more later in crime, welfare and other costs" if it does not invest more money in child care and after-school programming. The views of the chiefs are similar to those expressed by the public. "Congress' failure to substantially increase funding for educational child care and after-school programs is irresponsible and shortsighted," said Edward Flynn, Arlington, VA, police chief and a board member of the Fight Crime organization. For more information, contact Fight Crime: Invest in Kids at 202-638-0690 or visit the Internet site at http://www.fightcrime.org.

Students with Disabilities Can Be Disciplined

The Office for Special Education Programs responded to a public school teacher who was concerned over a perceived inability to discipline students with disabilities. The OSEP's director emphasized that the U.S. Department of Education's position has never been that a student with a disability is exempt from discipline solely because of that students' status if the student's misconduct is not a manifestation of his disability. As schools must be safe, disciplined and drug-free, the 1997 IDEA Amendments expand the authority of school officials to protect the safety of children while ensuring essential rights and protections are available to students with disabilities.

A school may change the placement of a disabled child to an appropriate interim educational setting, or another setting, or suspend the child for up to 10 days, to the extent such discipline would be applied to children without disabilities. A student who brings a weapon to school or a school function or uses or possesses illegal drugs may be put in an alternative educational setting for not more than 45 days. A school may go to a hearing officer to seek placement in an alternative educational setting for up to 45 days if the student is substantially likely to injure himself or others.

If the behavior is not determined to be a manifestation of the student's disability, the same disciplinary procedures applied to other children may be applied to a student with a disability, including suspension and expulsion. However FAPE must continue to be provided to students with disabilities, even if they are suspended or expelled from school. Also, the IEP team must address the behavior that resulted in disciplinary action by reviewing and modifying an existing plan or developing a behavioral intervention plan if one did not already exist.

Developmental Disabilities Services More Flexible

The Montana Developmental Disabilities Program (DDP) on October 1, 1999, began a new, innovative program that gave 281 clients the flexibility to select and pay for essential, limited support services of their choice.

Initiated with authority from the 1999 Legislature, the Community Supports Program provides individuals with a capped spending amount and enables them to select from various types of services, such as adaptive equipment, environmental modifications, transportation assistance or daily living training. Before any services are provided, DDP staff review all requests to see if they are reasonable and appropriate.

Previously, such services were only offered as a total package--an array of services were offered and paid for as a package. Because of the high cost of paying for a whole array of services at once, very few clients could be served and many eligible people remained on the waiting list with no services. With this new program, those who are waiting for residential or employment services can get started with some services while they are waiting for a more comprehensive program to become available.

For more information about this new program, contact Maggie Bullock or Sue Jackson at 444-2995.

Standards-Based IEPs Are On The Way

Since IDEA '97 was passed, IEPs for special education students are supposed to be clearly tied to the general education curriculum and its standards for typical students. The standards mentioned here are the general curriculum requirements adopted by states to ensure that all students are challenged to learn agreed-upon core skills in each subject area. In Montana, the state has adopted standards for core subjects and some local districts have adopted their own standards which meet or exceed the state standards.

Writing standards-based IEPs means that, through the IEP, every student in special education has the opportunity to participate in the general curriculum at whatever level and in whatever way is appropriate for that student. The IEP is the mechanism for ensuring access to the general curriculum standards through access opportunities and learning opportunities. However, this does not mean that the student must meet every state standard in which he or she is deficient. The IEP Team must determine if a particular standard is appropriate for the student, whether it would be reasonable to teach this skill and whether there is time enough in the student's program to teach the skill. Using a relevance-reasonableness-time method, the IEP Team can determine what parts of the general curriculum should become part of a particular student's IEP. The IEP goals can then be based upon general curriculum goals, but the objectives would be tailored to meet the individual student's needs. The objectives would describe specific steps along the way to meeting the general curriculum goal. Those objectives would be designed to begin at the student's present level of performance and move forward in the curriculum scope and sequence at a pace and in a way that meets the student's individual needs.

In order to make access to the general curriculum practical and possible for a student with special education needs, the student must first have access opportunities that might include things like:

• Supports and services to accommodate behavior, language, communication, vision and hearing needs;
• Classroom support--aides and tutors;
• Physical, occupational or speech/language therapies;
• Counseling;
• Positive behavioral interventions;
• Transportation and mobility training;
• Assistive technology; and
• Alternative placements.

Once the student has accessed the classroom environment, accessing the curriculum is accomplished through learning opportunities like accommodations, supports or individualized instruction to help students meet education standards. Learning opportunities might include:

• Classroom accommodations and modifications;
• Assessment accommodations and modifications;
• Alternative assessments;
• Curriculum modifications and adaptations;
• Learning strategies;
• Instructional strategies; and
• Adapted and alternative materials.

A standards-based IEP keeps a special education student connected to general education classroom and curriculum. This type of IEP provides a way to track a student's progress and measure that progress against what is expected of all students. The IEP document can provide a mechanism for accountability for the student and the school services that are being provided.

Parents involved in writing standards-based IEPs need to be aware of Montana's standards in various subject areas. Information about state standards is available on the Office of Public Instruction web site: http://www.metnet.state.mt.us or by contacting Dori Nielson at 444-3656.

New Grolier 2000 Multimedia Encyclopedia Available from PLUK Resource Library

Grolier has provided the PLUK Resource Library with a review copy of the Year 2000 Grolier Multimedia Encyclopedia School Edition on CD-ROM (Macintosh Version).

This new edition includes an extensive Teacher's Guide that helps educators integrate this reference tool into the classroom by providing the framework for research across the curriculum. In ten subject areas, twenty topics often taught in middle school and high school have been selected. This new guide enables students to see the interrelatedness of various fields of knowledge.

Highlights of the disc include:

• 37,000 authoritative articles, including 6,000 new and revised entries
• Over 500 articles updated monthly online
• 250,000-word dictionary
• 1,200 maps, 12 hours of sound, 7,000 images, and 150+ videos
• More than 26,000 article-to-Internet links
• New curriculum-based Research Starters to help students jumpstart research
• New Millennium feature that traces 1,000 years of the most important events in world history

If you would like to view or check out this new CD-ROM, please contact the PLUK resource library at 800-222-7585 or plukinfo@pluk.org.

Taxes, Taxes, Taxes

Parents of children with disabilities can take advantage of a number of tax deductions on both state and federal income taxes. To make the most of the tax advantages that are available to you, keep in the mind the following hints:

1. Keep Good Records. Record all expenses related to your child's disability, from medical care to travel and equipment expenditures. Make sure to note: (a) date of payment, (b) name and address of the person providing the service, (c) a brief description of the service provided, and (d) the amount paid. As a general practice, keep all canceled checks, bills and receipts related to deductible expenses. Keeping track of when bills are paid is important because expenses are deductible in the year in which the payment is made. Thus, if a child had an operation in December 1998, but the bill was not paid until January, 1999, the expense is deductible on your 1999 return.
2. Doctors' Prescriptions. Be sure to have written doctors' prescriptions for equipment, drugs, rehabilitation equipment, assistive technology, and necessary treatments.
3. Explain Your Claims. Tax returns are processed by computers that automatically single out anyone who claims high deductions. Thus, your tax returns have a good chance of being reviewed. However, if you write a letter explaining your child's disability and the deductions you are claiming and attach this letter to your income tax return, the tax officials will be less likely to ask you to explain your deductions in person.

State Income Tax

In 1977, the Montana legislature passed HB 728 allowing parents to claim an additional exemption for a dependent child with a disability. In order to be eligible for the exemption, a dependent child with a disability must:

• Have his/her principal residence in the home of the taxpayer;
• Have a permanent disability of great enough severity to constitute not less than 50% disability to the body as a whole.

Federal Income Tax

Since the 1986 Tax Reform Act, taxpayers may deduct only the part of medical and dental expenses and health insurance costs that exceed 7.5 percent of adjusted gross income. Taxpayers must be sure to reduce medical expenses by the total reimbursements received (including payments made directly to doctors or hospitals) before claiming those medical expenses. The following are allowable deductions on federal income taxes according to the Tax Reform Act of 1986:

1. Educational Programs. You may include in "medical expenses" on your tax return, payments to a special school for a person who has mental or physical disabilities if the main reason for using the school is that it has resources for relieving the disability. However, you may not deduct the cost of sending a "problem" child to a special school for the benefits the child may get from the course of study and the disciplinary methods (e.g., military school). You may also deduct expenses for a child attending a sheltered workshop if participation in the program is for relieving the disability.
2. Home Care. If a child with a disability lives at home, parents may deduct their costs for tests and evaluations; therapy and psychiatric care; special instruction or training, such as lip reading, braille, patterning exercise; medicines, drugs, vitamins and special foods and beverages, if prescribed by a doctor.
3. Medical Care. The IRS definition of medical care encompasses payments for diagnosis, cure, alleviation, prevention and treatment of disease or dysfunction of the body. Anyone who renders such service qualifies as a heath practitioner whose fees are deductible, including many types of professionals like occupational therapists, physical therapists, social workers, and speech pathologists.
4. Operations. Any operation, providing it is a legal operation and has been advised by a physician, is deductible.
5. Special Services. The costs of special services, whether inpatient, outpatient or provided at home, which are incurred when treating your child's disability are deductible. Any hospital services such as emergency room treatment, lab fees, x-rays, rental of equipment and ambulance services are considered medical expenses and can be deducted.
6. Cost of Special Equipment. To qualify as a deduction, special equipment must be necessary to alleviate the disability. Such equipment must be prescribed by a doctor.
7. Transportation. If parents incur transportation costs (airplane, train, bus or taxi fare) with their child with a disability, transportation may be deducted as a medical expense if it is incurred going to and from special schools and institutions, hospitals or doctors' offices. The cost of hiring a person to accompany a child with a disability who cannot travel alone to the above places may also be deducted. Parents who provide transportation are allowed to deduct for mileage, parking and toll fees.
8. Employment Related Child Care. If parents are gainfully employed or are actively seeking employment, they may take a tax credit for expenses incurred for the care of a dependent with a disability or for the cost of household services for the child with a disability. However, the cost for overnight camp is not deductible. Generally, if you pay someone else to take care of your child who is under 13 or for a dependent with a disability, you may be able to take a tax credit of up to 30 percent of the cost of the care. Expenses for which the credit may be claimed are limited to $2,400 for one dependent and $4,800 for two or more. Employees whose employers provide child or dependent care may, under certain circumstances, exclude up to $5,000 of the value of this care from their gross income. To claim this tax credit or take the exclusion for employer-provided assistance, get IRS Form W-10, Dependent Care Provider's Identification and Certification, and give one to each care provider to fill out and return. You can get the forms by writing to: Forms Distribution Center, Rancho Cordova, CA 95743-0001.
9. Legal. Legal fees directly related to medical care or disability can be deducted.
10. Barrier Removal. The law permits an individual with disabilities to deduct expenditures that improve accessibility to his or her personal residence. Construction of entrance ramps and widening of doorways to allow for the use of wheelchairs qualify as medical expenses eligible for deduction.
11. Employment Programs. Adults with disabilities receiving welfare or public assistance benefits can participate in certain programs under which special tax treatment occurs. When a person with a disability is paid by a state welfare agency for taking part in a work training program, he or she does not need to include the income in calculating gross income as long as the amount received does not exceed the welfare benefits that would have been received. Adults with disabilities can be employed in community service activities and need not include (in gross income) the wages, the allowances or the reimbursements (for attendant care, transportation, and other services that enable the person to work) paid to them. Individuals with disabilities who are employed can deduct expenses that are "impairment-related" such as attendant care or other services at the place of employment (paid for by the individual taxpayer) that enable the individual to work. To utilize this deduction requires filing Form 2106 and entering the amount calculated on that form onto the 1040 tax return form.
12. Assistive Technology. Under certain conditions, the cost of assistive technology may be deducted as a medical expense. The medical deduction set forth in the Internal Revenue Code includes amounts paid "for the diagnosis, cure, mitigation, treatment or prevention of disease or for the purpose of affecting any structure or function of the body." The key word in this definition which relates to assistive technology is mitigation. Assistive technology is often used to mitigate the effects of disability and allow the individual to function in daily life despite the presence of impairment. Mitigation of the effects of a disability by providing alternative methods of function achieves the same practical result as restoration of the function by traditional medical means. People with disabilities purchase many of the same items that anyone else uses. Tax issues arise when the cost is for a disability-related item. Disability-related items may be divided into three groups: (a) items designed or modified specifically for use by an individual with a disability (e.g., a hearing aid); (b) items in common use that acquire their significance through some unique functional capacity they confer on the user with a disability (e.g., a magnifying glass used by a person with a vision impairment); and (c) items that combine common use and specially designed components (e.g., an automobile with hand controls). In claiming a piece of equipment or a service as a deduction, the taxpayer must make the case that the equipment or service is being used to mitigate disability. The cost of a computer, for example, can be deductible if it was recommended by a physician or a rehabilitation counselor, or if the computer is modified in some way to accommodate the disability (e.g., adaptive keyboard, voiced software). When an expense is deductible, certain related costs are also likely to be deductible. For example, If a device or appliance is deductible, the cost of its upkeep and maintenance is also deductible. Supplies necessary to operate a deductible device, such as batteries, repair costs and the like, also qualify for deduction. These additional costs are only deductible as long as the need for the equipment continues.

Seek Tax Advice

It is always wise when itemizing medical and disability-related deductions to review these deductions with your tax advisor, a CPA, or tax attorney. For more information about federal taxes, call the IRS at 1-800-424-1040. The following publications are available from IRS free of charge by calling 1-800-424-FORM:

#17-Your Federal Income Tax

#502-Medical and Dental Expenses

#503-Child and Dependent Care

#526-Income Tax Deductions for Contributions

#907-Information for Handicapped & Disabled Individuals.

For those individuals that are connected to the internet, you may access all forms and publications on the IRS web site at http://www.irs.ustreas.gov.

ASK PLUK???

The following questions are recent inquiries received by PLUK staff.

Q: What obligations do school districts have to follow IEPs which were written in other states?

A: Montana school districts are not automatically obligated to follow an IEP brought from an out-of-state school district. This question comes up often because states have different ways of writing IEPs and different eligibility standards. Parents are often confused about why the new district won't immediately honor the IEP they brought with them when they moved to Montana from another state.

Legally when a student moves from one state to another, the new district in the new state has the right to determine whether the IEP meets its own state standards, including eligibility requirements. The new district must review the IEP from the out-of-state district in a timely manner. If the new district accepts all of the recommendations of the sending district, the new district can implement the IEP "as is" and only needs to provide the parents with a copy of the IEP and notify them of their procedural safeguards should the parents disagree with the content of the IEP or the placement. No additional IEP meetings are necessary if the parents are in agreement with implementing the IEP they brought from the sending district.

If, however, the new district disagrees with some aspect of the IEP from another state, then the new district must obtain parental consent and evaluate the student without undue delay. During the evaluation period, the student may be placed in an interim special education placement, with the parents' agreement, or if there is no agreement, the student must be placed in the regular education program.

Once the evaluation process is completed, an IEP meeting must be held to determine if the student is eligible for special education in Montana. If the student is determined to be eligible, an IEP must be written no later than 30 days after eligibility is established. The IEP Team must develop a new IEP based upon the evaluation data and the needs of the student. If the parents disagree with what the district proposes for the IEP, they would have to initiate due process in order to resolve the areas of disagreement.

All of this means that parents cannot assume that the services their child received in another state will automatically be provided in their new state of residence. Each state must follow the federal law, but there is quite a bit of leeway as to how each state implements the federal requirements. When families move into Montana, their IEPs from other states can be reviewed and changed by Montana school districts. Parents have to initiate due process if they feel that what is being offered in a Montana district is not appropriate for their child.

Q: I have had a licensed daycare business in my home for fifteen years. Currently, I have a four year-old boy in daycare that I am suspecting may have some serious mental health problems. What should I being looking for? What are the "red flags" of young children' behavior? What should I do about my suspicions?

A: As someone who has worked with young children for fifteen years, you are in a good position to notice when a child's behavior is unusual--very different from what is typical. The kinds of unusual behavior you should be looking for include:

• Very withdrawn (not just shy, but disengaged, in his/her own world, totally disinterested in other children);
• Extremely aggressive or angry (consistent pattern of lashing out at others, being extremely irritable)
• Very anxious (unable to relax, not engaged in typical activities because of anxiousness or unfounded fears)
• Extremely clingy (seeks adult attention constantly, rarely plays independently or with others)
• Very sad, low affect (rarely appears happy or content; doesn't express a range of emotions)
• Often "sick" (has many complaints of stomachache, headache, obscure muscle aches; complaints of sickness interfere frequently with classroom participation)

If you are noting any of these symptoms, the first thing to do is to talk with the child's parent. Try to determine if the symptoms you are seeing are also noted by the family. If the parent is in agreement that there is a problem, the parent could do any of the following: take the child to the pediatrician and ask for a referral to a mental health professional or make an appointment with the local Mental Health Center. If the child does see a mental health professional, it will be important for you as the day care provider to follow-through and help to implement whatever treatment strategies are recommended.

Q: The principal has informed us that our ten year-old LD son's behavior has become so disruptive that staff are going to have to make behavior management a top priority and let other things on the IEP go for now. We are very concerned that our son will not be getting the academic instruction he needs. We also think that the school staff want to focus on punishment and not on getting to the root of our son's misbehavior. What can we do?

A: It is, of course, concerning that your son is displaying disruptive behavior that is interfering with his learning. His behavior should be addressed, but managing behavior does not necessarily preclude continuing with academic interventions. Very often there is a direct connection between a child's disruptive behavior and his success (or lack of success) in academic areas.

The principal cannot change your child's current IEP unilaterally. What should happen is that an IEP meeting should be held and the team should discuss how best to handle the new behavior problems. Very likely, it will be appropriate to do a Functional Behavioral Assessment (FBA) to determine when and possibly why the disruptive behavior is occurring. Once this assessment is completed, the IEP Team can write an Positive Behavior Plan as an addition to the IEP. The current academic goals and classroom modifications can be continued or modified, but there is no reason to stop the academic interventions that your son needs in order to deal with his behavior.

Q: Our daughter has been diagnosed by her pediatrician as having ADD. We had her tested at school and she was determined ineligible for special education. She is doing better on medication, but still struggles with work completion, organization, and reading comprehension. Her grades are very low in all subjects. Isn't there any kind of help for her in school besides special education?

A: Your daughter may not have been eligible for special education as a student with learning disabilities, but she might be eligible under the category of Other Health Impaired. Was this category considered in the first evaluation? If not, ask that the Child Study Team (CST) reconvene and consider the OHI category.

If your daughter is still found to be ineligible for special education, she may qualify for assistance under Section 504. Section 504 is part of a federal antidiscrimination law. It covers all programs, including schools, that receive federal monies. Under a Section 504, your daughter can be provided accommodations and modifications in the regular classroom which may help her with work completion and organizational problems. If you want to investigate the possibility of having a 504 Plan, ask the school principal who the 504 Coordinator is for your school and notify that person that you would like your child assessed for 504 eligibility. To be eligible under 504, your daughter will have to have a disability that interferes significantly with a major life activity, in this case learning. Since your daughter is receiving very low grades and has a documented disability of ADD, she is probably going to be eligible for 504 services.

Q: It seems to us that school personnel meet often and discuss our son's special education program without including us. When we do attend an official IEP meeting, we get the sense that we are "out of the loop" on some important information which everyone else at the table knows. What are our rights to participate? Are there times when we can be excluded from educational decision-making?

A: The meetings identified in IDEA '97 for parent participation means IEP meetings, which are the only types of meetings where decisions can be made concerning identification, evaluation, placement and the content of a free, appropriate public education (FAPE). It is clear that IEPs must be constructed in the context of the IEP team meeting and that placement should be decided upon with full participation from all team members, including the student's parents. However, such requirements for parent participation do not preclude a special education teacher or therapist from bringing draft goals and objectives based on the child's progress and on the teacher's experience working with the child. Nor would it preclude staff members from bringing a draft behavioral program based upon the information produced as a result of the behavioral assessment.

Any drafts produced by school personnel and brought to the IEP team meeting should be presented as suggestions from school professionals based upon their experience with the child. They should not be considered documents written in indelible ink and placed on the appropriate form so that they may be immediately included in the IEP without further discussion.

Staffings held for the purpose of preparing for an IEP meeting or discussing other matters pertaining to the child may certainly be held without inviting the parent to participate. However, any information that professionals are using to make recommendations and are sharing with each other must be shared with parents as well. In other words, parents have a right to know the basis for the recommendations that professionals make.

At IEP meetings, it is appropriate for parents to ask "why" questions when professionals make suggestions. When it is time for decisions concerning identification evaluation, placement or FAPE, the parent must be included and must be given the chance to fully participate in the deliberations.

AlphaSmart 3000 Coming Soon!!!

The AlphaSmart 3000 is a simple, portable and affordable computer companion. It is compatible with any computer, Macintosh or PC, and with most printers. It enables users to type, edit and electronically store text (for example, reports, essays, email messages or notes), and to practice keyboarding, without having to be at a computer. The text can then be transferred to any computer for formatting, or directly to a printer. Its portability allows students to use it anywhere and anytime (for example, in the classroom, at home or on field trips). The AlphaSmart has an optional infrared interface that allows wireless transfer between the AlphaSmart and a computer or printer.

New architecture extends its functionality with Applets, mini software applications that can be downloaded to the AlphaSmart to extend it's functionality for keyboarding, templates, email and much more. In addition to the free, built-in word processing applet, AlphaWord , the first 2 applets that will be available are the Calculator applet, and KeyWords , a full instructional-based keyboarding program.

To evaluate the AlphaSmart keyboard, please call 1-888-274-0680 to request a free loaner for two weeks, or send email to loaner@alphasmart.com.

For more information and pricing visit the AlphaSmart website at http://www.alphasmart.com.

It is expected that this new version of the AlphaSmart will begin shipping in March. To get special pricing in Montana, contact Terry Lankutis at 406/388-7831 or lankutisT@aol.com.

Parent Corner
Items of interest to parents

Beware Miracle Cures
Copies of a free consumer alert about fraudulent health advertising on the Internet, titled "Virtual Treatments Can Be Real-World Deceptions," are available from the Federal Trade Commission, Consumer Response Center, 600 Pennsylvania Ave. N.W., Washington, DC 20580; 877-FTCHELP or http://www.ftc.gov/bcp/conline/pubs/alerts/mrclalrt.htm.

Head Lice Treatment
Head lice have become immune to many of the drug treatments that used to be successful. If your child has a stubborn case of head lice, ask your physician about using a new lotion called Ovide. Ovide can be used in children as young as 6 years. In clinical trials, 95% of children were lice free 24 hours after treatment, and 90% were still lice free a week after treatment. For more information contact Medicis, the Dermatology Co., 4343 E. Camelback Rd., Phoenix AZ 85018; 800-550-5115.

Special Olympics
State Special Olympics will be in Billings for the next three years. This year's dates are May 10, 11, and 12. There will be a new event starting which is called Bocci ball. PLUK will be sponsoring a Parent Hospitality Center at the Games.

International LDA Conference
The LDA International Conference "Bet on a Better Future: LDA 2000 & Beyond" will be held February 16-19 in Reno Nevada. For more information, contact Registration Chairman, LDA 2000 International Conference, 4156 Library Rd., Pittsburgh PA 15234-1349.

Help Autism Research
The Autism Genetic Resource Exchange (AGRE) is looking for families with more than one member affected by autism, PDD or Asperger's syndrome. If you would be interested in participating in this research, call 1-888-AUTISM 2. The family Coordinator for this project is Marianne Toedtman.

Thrift Store Opening in Roundup
COR Is opening a thrift store on Main Street in Roundup. The purpose of the store is to offer employment for people with disabilities as well as provide a service to the community of Roundup. COR is soliciting donations for the thrift store. Clothing, TV's, appliances, furniture, and other items in good repair may be brought to COR at 200 S 24th Street in Billings. For more information, contact Robert Snizek at 256-8160.

Autism Conference
Autism 2000 Conference will be held April 5, 6, and 7 in Wilkes-Barre, Pennsylvania. For more information, contact Jennifer Eidam at 888-879-8858.

Autism Tissue Program
The Autism Tissue Program is asking family members of persons with autism to consider donations of brain tissue for scientific study. When an individual with autism dies, brain tissue can be extracted and donated for biomedical research on autism and related disorders. In such cases, a brain donation can be initiated by calling 1-800-BRAIN-BANK. The next-of-kin can give consent to donate over the telephone; written consent forms for signatures will follow by fax and in the mail.

If you have any questions about this project or wish to request an information brochure, please call Dr. Jane Pickett at 1-877-333-0999 or write to her at 414 Wall Street, Research Park, Princeton NJ 08540; or e-mail tissueprogram@naar.org.

Diabetic Support Group
A support group for all Type I diabetics and their family members and friends is held in Billings on the third Tuesday of each month at 7:00 p.m. in St. Vincent Hospital, Marillac Hall, Madison/Jefferson Room. For more information, call Betty Erickson at 656-8911.

Diabetes CD Rom
"The Life Adventure Series: Diabetes" CD-ROM teaches children about managing diabetes with an animated adventure game. In a study at Childrens Hospital of Los Angeles, children who played the game learned more and felt more responsible for managing their diabetes than did those who attended a class or played a game that focused on animals rather than the children themselves. Free copies of the game, narrated in English and Spanish, are available from the Starbright Foundation, 1990 S. Bundy Dr., Suite 100, Los Angeles CA 90025, 800-315-2580, ext. 3.

New Director at DDPAC
The Developmental Disabilities Planning and Advisory Council has hired a new Executive Director, Deborah Swingley. Deborah has been with the Council for the past 13 years as the Administrative Officer/Contract Manager, and now she is stepping up to the leadership role.

DDPAC provides advice and guidance to the state system of developmental disabilities services for children and adults. Deborah may be contacted at the Council offices at MT toll free 1-800-337-9942 or her direct line 444-1337.

Outreach Brochure
The Department of Public Health and Human Services (DPHHS) is making available a brochure which describes eligibility and services plan features of the state's mental health services for low income Montanans. Copies are available by calling 444-2878 or on the Internet at http://www.dphhs.state.mt.us/hot/mhap.htm.

Support Services Are Available at Postsecondary Level

Ninety-eight percent of the nation's public colleges and universities enroll students with disabilities and 63 percent of private institutions also enroll students with disabilities. According to the National Center for Education Statistics, postsecondary institutions reported offering the following types of accommodations for students with disabilities who need them:

• Alternative examination formats and additional time
• Readers and notetakers
• Adaptive equipment (assistive devices)
• Textbooks on tape
• Sign language interpreters
• Course substitutions or waivers.

To receive these accommodations, students with disabilities enrolling in college should take the following steps:

• When you are accepted for college, send information to the Admissions Office documenting the fact that you have a disability (e.g., psychoeducational testing, CST documents).
• Register with the disability support office or other office that handles disability accommodations.
• Determine with the help of the support service personnel what types of accommodations you will need on a routine basis.
• Make sure that you have transportation to campus and on campus.
• Register as early as possible to make sure you get the classes you need. Also make sure that you can get the books on tape you need or interpreters for the classes in your schedule.
• Consider taking a lighter load of classes during the first semester, so that you have an opportunity to see how the accommodations you receive work for you before you take on a full load.
• When planning your class schedule, make certain you will be able to get to class on time in the mornings if you receive attendant services. Provide yourself with enough time to get to classes throughout the day. Plan for breaks if there are disability-related issues that need to be handled during the school day.
• Find the actual locations of your classes and make sure they are accessible to you.
• Go inside each classroom you will be in and see if it has the things you will need (e.g., wheelchair access, nearby accessible bathrooms).
• If problems arise, go immediately to the disability support office to ask for assistance.
• Learn about all the services, disability-related or not, that might be helpful to you (e.g., tutoring services, writing or math labs, computer labs, counseling).

Researchers Close to Test for ADHD

Stanford University researchers report making progress toward a scientific diagnosis of ADHD. By using functional magnetic resonance imaging (FMRI), researchers have been able to measure brain activity in the frontal lobes and basal ganglia--the parts of the brain that control the regulation of voluntary movement--of children diagnosed with ADHD and taking Ritalin.

The Stanford researchers believe they have pinpointed the parts of the brain affected by ADHD which could lead to a more conclusive diagnosis and alternative treatments for the disorder.

The FMRI, developed in 1992, uses special computer software to pick up on differences in the magnetic properties of blood in different areas of the brain. In this case, the test measured the effect of Ritalin has on responsiveness.

The researchers studied 16 boys between the ages of 8 and 13. Ten of the boys were diagnosed with ADHD and taking Ritalin for one to three years. The other six had not been diagnosed. The boys were instructed to press a button when they saw any letter of the alphabet, except the letter X, flashed on a display screen.

The task proved to be difficult for the boys with ADHD because of their poor impulse control. Thus, the FMRI found that Ritalin increased brain activity in the basal ganglia.

It also found decreased activity in the basal ganglia in those boys not diagnosed with ADHD. Within the next two years, researchers plan to expand the FMRI to measure the effects of Ritalin in girls, as well as different hyperactivity symptoms. Further research may lead to physical tests that can distinguish ADHD and subtypes of ADD from other conditions with some similar symptoms like learning disabilities or childhood depression.

Brain Scans Assist in ADD Diagnosis

For the first time, brain scans have revealed measurable biochemical differences in people with attention deficit hyperactivity disorder, a discovery that could reduce the number of children mistakenly diagnosed and put on drug treatment unnecessarily.

The diagnosis of ADHD, usually made in school-age children, is commonly based on observed behavior and some experts believe that it is highly subjective--essentially just an educated judgment.

Some say the condition is being overdiagnosed in the United States, exposing children unnecessarily to medication, while others argue that it is not treated often enough.

Earlier studies have shown that scans can detect structural differences in the brains of people with ADHD, as well as abnormalities in brain activity, and scientists suspect that defects in genes relating to the brain chemical dopamine probably are involved.

The latest study, conducted at Massachusetts General Hospital in Boston and published in The Lancet medical journal, is the first to show a measurable biochemical abnormality in people with the disorder.

The method tested in Boston has been called "the most promising development" in diagnosing ADHD because the scientists have come up with the most direct indicator to date. Specifically, this new method allows scientists to measure the biochemical balance in the brain by counting the number of dopamine transporters.

Dopamine is associated with movement, thought, motivation and pleasure. One brain cell signals another by squirting dopamine. Then the first cell mops up the released chemical with a structure called a dopamine transporter.

The researchers scanned the brains of six adults diagnosed with ADHD and 30 healthy people of the same age after injecting both groups with a chemical agent that attaches to the dopamine transporter.

The individuals with ADHD had 70 percent more dopamine transporters than their healthy counterparts.

The scientist could not tell, however, whether the increased number of dopamine transporters was a cause or an effect of the disorder.

The increased number could either mean not enough dopamine is floating around the system or that too much is being produced.

ADHD is characterized by impulsive behavior and difficulty paying attention and keeping still to read, study or even watch television.

Dyslexic Kids' Brains Work Harder

For the first time, a study has confirmed that there are chemical differences in the brain function of dyslexic and non-dyslexic children. University of Washington researchers have found that dyslexic children use nearly five times the brain area as normal children while performing a simple language task.

Dyslexia, a reading disorder, is the most common learning disability, affecting an estimated 5 to 15 percent of children. The research also provides new evidence that dyslexia is a brain-based disorder.

UW researchers used a brain-imaging technique to track the metabolic brain activity of six dyslexic and seven non-dyslexic boys during oral language tasks. Professor Todd Richards of UW Radiology notes that the imaging tests showed that the boys with dyslexia used 4.6 times as much area of their brains to do the same language task as the controls. This means that the brains of the boys with dyslexia were working a lot harder and using more energy than the normal children.

Finding a physiological cause for dyslexia may not lead to a cure for the condition, but may point the way to effective treatment of the brain condition.

Dyslexia is a lifelong condition characterized by the inability to read despite having normal intelligence and adequate reading instruction. Though dyslexia is not "cured," individuals with the condition can learn to compensate for their reading problems and often do shine in other areas of accomplishment.

Source: (Dec. 1999). Dyslexic Kids' Brains Must Work Five Times Harder. University of Washington Magazine, p. 12.

Brain's Moral Compass Located

University of Iowa College of Medicine researchers report in the November issue of the Journal Nature Neuroscience that they have located a key part of the brain's circuitry for learning moral and social rules. Antisocial behavior might depend at least in part on malfunctions in this circuitry, according to these same researchers.

Though it is too early to draw conclusion, and the study does not claim that all antisocial behavior can be blamed on damage to the brain, this new study does suggest that physical aspects of brain functioning may have strong influence on moral decisions and subsequent behavior.

The brain area, called the prefrontal cortex, has long been known to affect social behavior. Prior studies show that people who sustain damage to it as adults can start acting irresponsibly. A classic tale in brain science, in fact, concerns a railroad construction foreman named Phineas Gage who was the victim of an 1848 explosion that drove a metal rod through his prefrontal cortex. Before the accident he had been industrious, dependable and well-liked, but afterward he became a drifter who was profane, unreliable, impulsive and inconsiderate of his loved ones.

Studies of similar individuals have shown that despite their disruptive behavior, they do know the moral and social rule of society.

The new work at the University of Iowa, focusing on two adults who sustained damage to the prefrontal cortex before age 16 months, suggests that such early damage can even keep people from learning the rules.

The man and woman in the Iowa study were reared in stable homes and had normal intelligence. As adults both engaged in petty thievery, lied habitually, failed to hold jobs because of lack of dependability, acted irresponsibly sexually and showed no guilt or remorse for their behavior.

In lab tests, they could not properly respond to hypothetical dilemmas like:

• A man must steal a drug to save his wife's life. Should he do it?
• Two people disagree on what TV channel to watch. How can they solve the problem?
• Your boss invites you to a party you don't really want to attend. What should you do?

One theory posed by researchers is that the prefrontal cortex is important in using emotions in making decisions. For these two people, in the Iowa study, the brain damage they suffered as toddlers apparently kept them from absorbing lessons taught through reward and punishment in childhood. Therefore, as adults, these two individuals were completely unable to reason morally or determine right and wrong.

What Can A Parent Do About Bullying?

Bullying is a significant and pervasive problem for children in school. For many youngsters, fear is part of the everyday life of being a student.

How Big Is the Problem?

• One in 10 students report being regularly harassed or attacked by bullies
• Forty percent of bullied students in primary grades and 56% of bullied students in secondary grades reported that teachers tried to put a stop to bullying only "once in a while" or "almost never"
• Eighty percent of 8th through 12th graders reported being bullied at some point
• Ninety percent of 4th through 8th graders reported being bullied at some point
• Twenty percent of 4th through 8th graders reported academic difficulties resulting from peer abuse.

(Excerpted from The Family Action Guide for Preventing Youth Violence, Safe Schools and Communities Coalition.)

In order to avoid teasing, harassment or even physical attack, students may avoid certain parts of the school building, skip school, feign illness or actually become sick because of the pressure. This fear may be felt not only by the targeted children but also by other classmates and adults who are exposed to this tense environment.

To lessen the incidence of bullying, adults must take responsibility for setting standards and enforcing norms which do not tolerate bullying behavior. Not only does the targeted child need help, but so does the bully.

Children who are bullies often have the following behavioral deficits:

• Using self-control
• Cooperating
• Problem solving
• Helping others
• Sharing
• Making good decisions.

Bullies usually have not internalized social "rules" for behavior, such as how to have positive interactions and solve problems. This lack of an internal set of rules about appropriate social behaviors is problematic, but becomes magnified when coupled with lack of self-control.

Bullies tend to be impulsive. They react immediately and often seem out of control in problematic situations. A classic behavior of bullies is their inability to take ownership of or responsibility for their problems. They usually blame others or act as though they had absolutely no control over their actions, problems, or situations.

Children who have been identified as being bullies need the following kinds of instruction:

• Social entry behaviors: using body language, starting a conversation, joining into a game or group, and noticing the feelings of others
• Maintaining social interactions: keeping a conversation going, playing cooperatively, and expressing feelings
• Solving problems: dealing with teasing, dealing with losing, dealing with being left out, using self-control, and accepting "no".

The most effective methods for teaching these social skills include modeling, coaching, cognitive strategies, self-management, and positive reinforcement.

Children who are targeted by bullies must be protected and made to feel safe. In some cases, targeted children exhibit some social problems of their own which make them more easily victimized. But no child should be made to feel that it is his or her fault that someone attacks them and makes going to school a frightening experience. Here are some general suggestions for children who experience teasing or bullying:

1. Stop, take a deep breath, and count to five.
2. Decide what the problem is and how you feel about it.
3. Think about your choices and their consequences--
   1. Ignore the teasing
   2. Walk away
   3. Say something good about yourself to yourself or to the other person
   4. Say how you feel about the teasing in a friendly way.
4. Decide on your best choice.
5. Do it.
6. If you are not successful in getting a bully to stop, tell a trusted adult.

When a child reports bullying to an adult, these reports must be taken seriously. The bully needs to be located and given an opportunity to talk about his or her role in making others feel fearful. If the report of bullying is an accurate one, the bully needs to be engaged in a program to assist him or her with learning better ways to interact.

During the time when a bully is being trained in social skills, the adults in the school environment need to be very vigilant about the welfare of the children who have been "victimized" in the past by the bully. It is not unusual for a victim child who reports bullying to be the subject of retaliation at school or on the way to school or the way home. In severe cases of bullying, the bully may need psychological intervention by mental health professionals.

Fighting Depression By Shocking the Brain

Dr. Mark George of the Medical University of South Carolina reports the results of an interesting new treatment for depression--vagus nerve stimulation. This treatment involves sending tiny electric shocks into the vagus nerve in the neck which then relays the messages deep into the brain.

About half of the 30 depressed individuals treated in a pilot study--people who had failed with every other treatment--showed some improvement. The results of George's study are not definitive, but have hopeful implications for treating depression and possibly other mental problems like memory loss and uncurbed appetite leading to obesity.

The vagus nerve is one of the information superhighways between the brain and other organs. It relays messages, such as signals to regulate heartbeat, and sends messages back to the brain, such as when the stomach is full.

The nerve also reaches deep into regions of the brain to regulate mood and emotion.

If the implant truly signals the depressed brain circuits to act more normally, it could prove important for some of the estimated 1 million Americans with depression uneased by conventional therapy.

The stimulator is essentially a brain pacemaker. A generator the size of a pocket watch is implanted into the chest with wires snaking up the neck that zap the nerve every few minutes.

Two years ago, the Food and Drug Administration approved the implant to treat severe epilepsy. Soon after the implants began to be used, doctors began reporting that individuals with epilepsy felt happier even if the implant failed to reduce their seizures.

Genetic Test Available for Rett's

The gene responsible for Rett syndrome, one of the most common causes of mental retardation in girls, has been found and genetic testing for mutations in this gene is now available.

Rett syndrome, which affects 1 in 10,000-15,000 girls, is an X-linked progressive neurodevelopmental disorder. Affected girls usually develop normally until 6-18 months of age. They then gradually lose speech and purposeful use of their hands, replacing the latter with stereotypic hand wringing. They also develop microcephaly, seizures, ataxia, apraxia, growth delay, and mental retardation.

One of the first payoffs of the discovery of the affected gene and the development of a genetic test will be to improve the accuracy of early diagnosis of Rett syndrome, which is often confused with autism or cerebral palsy.

There is currently no treatment for Rett syndrome. However, researchers hope that identification of the gene will lead to the development of ways to treat or prevent the disorder, particularly in the months after birth before symptoms appear.

The test for Rett syndrome is available from Baylor College of Medicine, DNA Diagnostic Laboratory, One Baylor Plaza, Room T536, Houston TX 77030; 800-226-3624. The cost is $950 for the index case and $250 for testing additional family members. Insurers may vary on whether they will cover the cost of the test.

FDA Links Maternal Risk Factor with Down Syndrome

An impaired folate metabolism may be a maternal risk factor that contributes to having a child with Down syndrome, according to a study funded by the U.S. Food and Drug Administration's Office of Women's Health.

The study, conducted by the FDA's National Center for Toxicological Research, indicates that the folic acid supplementation taken two months prior to conception may reduce the number of children born with Down syndrome, which is a leading genetic cause of mental retardation occurring in one out of every 700 births.

Down syndrome is caused by an extra copy of chromosome 21, which usually originates with the mother and is due to an error in chromosome separation before conception. The study revealed that mothers of children with Down syndrome have an imbalance in folate metabolism that may be explained, in part, by a genetic variation in an enzyme involved in the folic acid pathway.

The study was published in the American Journal of Clinical Nutrition.

First Secretin Study Published

The December 9, 1999, issue of The New England Journal of Medicine includes a research report of a double-blind, placebo controlled study to test the effectiveness of Secretin in the treatment of autism.

Secretin is a peptide hormone that stimulates pancreatic secretion. After recent publicity about a child with autism whose condition markedly improved after a single dose of secretin, thousands of children with autistic disorders may have received secretin injections. Secretin has been approved by the Food and Drug Administration only for single-dose use in the diagnosis of certain gastrointestinal disorders. Any other use of the drug would have to be considered experimental.

The original report of remarkable recovery from autism after the use of secretin concerned a three-year old child with autism and chronic diarrhea who underwent an endoscopic procedure that included the intravenous administration of secretin to assess pancreatic exocrine function. Within a week after the procedure, the child's parents noticed dramatic improvements in his behavior and language skills.

Following this case, media attention focusing on anecdotal reports of secretin-related effects in children with autism escalated into reports that secretin may represent a "cure" for autism. There have even been reports of the sale of sham secretin, price gouging, and other forms of profiteering. It is estimated that at least 2,500 children with autism have received secretin injections.

Adrian Sandler, M.D. and colleagues in North Carolina decided to determine if the anecdotal reports of secretin's effectiveness with autism would be supported in a rigorous scientific test. They undertook a randomized, double-blind, placebo-controlled trial of synthetic human secretin in 60 children diagnosed with autism (30 in the secretin group and 30 receiving a placebo). The children were randomly assigned to treatment with an intravenous infusion of synthetic human secretin or saline placebo. Standardized behavioral measure of the primary and secondary features of autism, including the Autism Behavioral Checklist, were used to assess the degree of impairment at base line and over the course of a four-week period after treatment.

Sandler and his colleagues found no statistically significant improvement in the behavior or language skills of the group treated with secretin. As compared with placebo, secretin treatment was not associated with significant improvements in any of the outcome measures. Among the children in the secretin group, the mean total score on the Autism Behavior Checklist at base line was 59.0 (range of possible values, 0 to 158, with a larger value corresponding to greater impairment), and among those in the placebo group it was 63.2. The mean decreases in scores over the four-week period were 8.9 in the secretin group and 17.8 in the placebo group. From his study, Sandler has concluded that a single dose of synthetic human secretin is not an effective treatment for autism or pervasive developmental disorder. (N Engl J Med 1999; 341:1801-6.) This study, though clear in its results, would need to be replicated and extended in order to draw any definitive conclusions about the effectiveness of secretin in treating autism.

Other studies of treatments for autism and related conditions support the importance of structured behavioral and educational intervention. Although no medication has proved curative, the treatment of specific symptoms (e.g., anxiety, hyperactivity) has been helpful.

Autism affects 1 in approximately 2000 children and is associated with some degree of mental retardation in about 75 percent of cases. In slightly less than half of cases, affected persons never develop communicative speech.

Given the seriousness of autism, the willingness of parents to pursue unproven or emerging treatments like secretin is understandable. In the past, numerous medical cures--including psychosurgery and injections of sheep-brain extract--, have been considered and rejected. Educationally-based treatments have, thus far, proved to be the most effective of the available options. Special education and attention to the child's behavior to improve communication, speech, and other skills have the most scientific support as effective treatments.

Parent Links -- to the World Wide Web

New Documents….
The National Assistive Technology Advocacy Project of United Cerebral Palsy Associations and Neighborhood Legal Services announce the publication of another booklet in the Funding of Assistive Technology Series. This booklet, which is available at http://www.nls.org/natmain.htm is entitled "Medicare, Managed Care and Alternative Augmentative Communication Devices for HMO and Other Medicare+ Choice Participants." If you would like a hard copy of this booklet, please contact Sgoodman@ucpa.org.

Assistance with Drug Costs
The NeedyMeds Web database at http://www.needymeds.com lists assistance programs offered by more than 150 pharmaceutical companies, including criteria for assistance and the amount of each drug that will be provided. The database is searchable by drug type. The site is maintained by Rich Sagall, M.D., a family practice physician.

Teen Sexual Health Site
The Web site at http://www.iwannaknow.org informs teenagers about puberty, sexually transmitted diseases, birth control, and sexual intimacy in straightforward language. It includes a parents' guide with tips for communicating with teenagers and a chat room where visitors can ask a health educator questions. This site is sponsored by the American Social Health Association, P.O. Box 13827, Research Triangle Park, NC 27709; 919-361-8400.

Three On-line Pharmacies Certified
Three on-line pharmacies have been given a seal of approval from the National Association of Boards of Pharmacy. The sites are designated as verified Internet pharmacy practice sites (VIPPS). The seal with the VIPPS logo appears on the home pages of the sites, which are among the most prominent on-line pharmacies that make prescription drugs available over the Internet.

The seal of the NABP, whose members include the state pharmacy boards, essentially certifies that the sites meet what the NABP describes as a "rigorous" list of pharmacy practice standards set by the state boards of pharmacy.

Since the program is voluntary, the absence of a VIPPS seal does not necessarily mean that sites without the seal are illegitimate. There are, however, pharmacy sites on the Internet who appear to be making prescription drugs available to anybody who wants them. Often this is accomplished with the help of physicians who sign off on prescriptions for people who have often done nothing more than fill out an on-line questionnaire.

The Web Sites approved by NABP are:

http://planetRx.com
http://www.drugstore.com
http://merck-medco.com.

On-Line Help for Selecting a Tutor
If you are considering selecting a tutor for your child, there is a list of helpful questions to help you choose the right one. The Schwab Foundation for Learning, a nonprofit serving parents and educators of children with learning differences, has created a complete list of questions to assist parents in finding the right person to tutor your child. To view this list, please visit:

http://www.schwablearning.org/main.asp?page=2.9.3&pubs=parent&id=301

Dyslexia Article On-line
The recent Newsweek cover story on Dyslexia can be found on-line at:

http://newsweek.com/nw-srv/printed/us/so/a55124-1999nov14.htm.

Links to Educational Materials On-line
Teachers, parents and students can access lessons and educational materials on any topic at the Department of Education's new Gateway to Education Materials (http://www.thegateway.org). The Gateway makes finding materials on the Internet easy by connecting users to over 140 web sites.

Health Insurance Web Site
Learn how to get health insurance for your children through the Children's Health Insurance Program (http://www.insurekidsnow.gov). CHIP's web page offers state-specific information on who is eligible and how to enroll to make sure children has health insurance coverage.

On-line Magazine for Teens
Disability Central is launching an on-line magazine for teens with disabilities. Disability Central is looking for teens with disabilities who would like positions as writers, editors, marketers, and advertising staff. Those interested in part-time employment, go to http://www.disabilitycentral.com for job descriptions.

Free Braille Transcribing On-line
HotBraille.com, inc. is the only free Braille transcribing service on the Internet. Located in Oakland, California, HotBraille was founded by a group of Web and Braille enthusiasts with the mission of providing anyone with free Braille.

For Internet users who are blind, instead of buying and maintaining your own Braille printer and translation software, you can use hotbraille.com for all your writing needs. Use hotbraille.com to print your class notes, recipes, written reports, internet sources, or make a record of your everyday notes, all in Braille. As long as you limit each letter size to 4 Braille pages, this website will print the message you provide on the screen and send it to you in Braille for free.

If you are not blind, you can send letters in Braille to friends with visual impairments. The service is fully web-enabled and free. Once you register as a member, you can use the service as many times you want and send to as many people as you want. As long as you limit each letter size to 4 Braille pages, the service will print the message you provide on the screen, Braille it, and send it.

http://www.hotbraille.com

The Partners in Policymaking Program

Teaches individuals with disabilities and family members to be community leaders. Participants in Partners make a personal commitment to develop their skills as advocates and future policymakers in Montana, through their involvement in a one-year period of training and mentoring. The Montana Partners in Policymaking has members across Montana dedicated to increasing public awareness, providing information and support to other parents and family members and facilitating change in legislative and policy issues.

Vision Statement
Continue to be a growing network of parents and other advocates making a difference in the lives of individuals challenged with disabilities

Mission Statement
Working together to unite advocates and persons challenged by special needs to promote education, advocate for legislative and systems change.

What are the Special Needs?

• Developmental Delays
• Physical Disabilities
• Emotional Disabilities
• Learning Disabilities
• "At Risk"

Making a Difference in the Lives of Individuals with Disabilities

Partners Can:

• Inform and empower families and individuals to be effective advocates for themselves
• Inform you of your educational rights
• Educate communities of the importance and value of every individual in our society
• Provide resources

Next Month:
Look for PIP Speaks in upcoming PLUK Newsletters. In the next issue we will update you on what the Legislative, Networking and Education & Awareness Committees are doing. We'll also feature our Partner Profiles, so please all Partners get your profile in as soon as possible.

Attention Partners:
We would like to list your area of expertise and e-mail address if you have one. It would enable people looking for resources to choose their area of need, i.e. Downs Syndrome, Tourette Syndrome, Autism etc. Please contact Kelly Johnson or Donna Smith with your information.

CONTACTS IN YOUR AREA
Following is a list of Partners in your area who can help you get connected to resources available to you. Feel free to call a Partner closest to you, see the PLUK map on the back cover of this newsletter.

REGION 1
Elsie Efta, Wibaux -- 588-3033
Donna Smith, Outlook -- 895-2447
Paula Holdeman, Plentywood -- 765-2927
Millie Kindle, Malta -- 654-2097
Darlene Limberhand, Lame Deer -- 477-6732
Joe Whitewolf, Jr., Lame Deer -- 477-6732
Gayle Peterson, Miles City -- 232-3942

REGION 2
Erik Carlson, Black Eagle -- 727-0867
Fred & Laurie Brown, Inverness -- 292-3244
Jamie Widhalm, Conrad -- 278-7366

REGION 3
Kevin Kosmann, Billings -- 652-6750
Karen Thomas, Bridger -- 668-7459
Sheri Lee, Billings -- 256-7073
Vern Anderson, Billings -- 245-6466
Audrey Mauritzson, Billings -- 652-0537
Gerald Pease, Lodge Grass -- 639-2598
Gerry Doiron, Billings -- 656-3232
Janet Luciano, Lewistown -- 538-6170
Ramona Weber, Billings -- 259-7950

REGION 4
Sherry Twomey, Whitehall -- 287-7861
Vicki LaFond-Smith, East Helena -- 227-8689
Judith Oberst, Helena -- 449-3891
Anne Galasso, Butte -- 494-0148
Shanna Ahmed, Butte -- 494-4677
Teri Tyvand, Anaconda -- 563-5491
Adrienne Gibson, Bozeman -- 582-4464

REGION 5
Karen Adams, Eureka -- 882-4775
Kelly Johnson, Kalispell -- 756-3137
Deanna Johnson, Missoula -- 728-1124
Val Piercy, Missoula -- 251-6463
Gina Tschida, Missoula -- 273-4677
Joyce Shepard, Frenchtown -- 626-5284
Kris Kelly, Missoula -- 542-6634
Jim & Gwen Beyer, Polson -- 883-3841
Juanita Hirschi, Florence -- 273-6050
Sharon McMann, Whitefish -- 862-5877

If You Don't Call &endash; Who Will?

Partner Profiles:

Hello, My name is Darlene Limberhand, Northern Cheyenne, from Lame Deer, Montana. In 1997 I started attending Montana Conferences on Developmental Disabilities. In 1998 I joined Parents for Partners in Policymaking and graduated after 6 sessions, and am very proud. I have two sons with disabilities. My nine-year-old boy has a seizure disorder. My baby, whom is 4 years old, has Developmental Delays, which have been diagnosed as polydactyl (feet) megacephaly (head) tracheamatechea trouple (swallowing). Since I've been attending these workshops, I have a clearer understanding of children's disabilities. My skills and knowledge have increased so that I am a better advocate for my children. I am thankful for everything that Parents for Partners in Policymaking has done for us.

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Hello, my name is Joe Whitewolf Jr. Darlene Limberhand and I have a son, Skye Gregory Whitewolf who is 4 1/2 years old with a disability. That is how I got involved with Parents for Partners in Policy Making. I am very proud and thankful how everything turned out for my son's sake. We joined Parents for Partners in Policymaking and it has helped me understand how to be a better father to my son.

&endash;&endash;&endash;&endash;&endash;

My name is Adrienne Syme Gibson and I am a 1998 Partner in Policymaking graduate. After raising my two sons and one daughter in Billings, I ventured out to Seattle and lived there for nine years. I returned to beautiful Montana to be closer to my brother, Greg Syme, and other family and friends. I have five grandchildren and treasure my time with them. After a lifetime of being employed, I am now trying to be "retired" ( whatever THAT means! ).

My brother Greg has developmental disabilities. He lives in a group home in our hometown of Plentywood, works in the Glenwood workshop and also enjoys their senior program, Options. I am Greg's sister, friend, and guardian. Joining Partners was my way of keeping up with issues that impact him. I am deeply involved with his life and as a result of countless trips to visit him, my car nearly drives itself up there!!

As my mentorship plan for Partners, I chose to work with the Vocational Needs Coordinator at Bozeman High School. I went to the school up to three times a week to work with the students in their activities, attend their Life Skills classes and go along to their jobs where they learned skills to assist in their transition from high school. Last fall I was able to be with the students as they operated their "Mini-McDonalds" hamburger stand at the high school football game. It was great fun, and as always, I came away enriched by their spirit.

My journey with Parents is some different than most because my special person is an adult and his lifestyle and services are stable. Through my inquiries into various needs in Bozeman, I was involved to the Special Services Department. Through them, I have become involved as a surrogate parent for children who are wards of the state. It requires a court appointment and I now have two children. The main function is to attend their IEP meetings and be their advocate.

My Brother grew up in the '50's and the '60's. There was very little, if anything, to help families of disabled children and I remember the struggles and heartaches all too well. They, the families and the children alike, paved the road to the services available today. While there are "miles to go before we sleep", I am encouraged by the advances of today. Partners and advocates of the disabled. I am proud to be included in their program and thank DDPAC, Kathy Kelker and all of the wonderful volunteer educators who gave their time and knowledge to us.

PASS Plans Turn Student Dreams Into Reality

Last year George's teachers expected that when he left the school system at age 19, it would be to go to the local workshop where he would likely spend the remainder of his adult life. This year, George's teachers are among the customers of his food delivery service in western Montana. Not only have they completely changed their minds about the prospects for George's future, but his success has resulted in their raised expectations for many of their students who have significant disabilities.

What made all this possible? Money and expertise from several sources were combined to help George and his family dream about his future and then take the steps to make those dreams come true. A national employment pilot project through the Rural Institute in Missoula helped George identify his skills and interests, and try out different work environments. Staff from Montana Vocational Rehabilitation and another Rural Institute project helped piece together money to provide George with job development, job coaching, and personal assistance. Finally, a business plan was written for the food delivery business, and a PASS plan was written to generate the money necessary for George to buy the van he needed to deliver the food.

PASS plans allow persons who receive SSI to set aside income and/or resources that SSI would usually count, and to then use that money to achieve a work related goal. In other words, the SSI recipient ends up with an extra pot of money to help them learn, find, perform and/or maintain a job. The extra money generated by a PASS plan can be used for further training or education, for equipment or tools, for transportation to work, for job development and coaching, for work evaluations, or to start your own business like George did.

Once used primarily for adults, PASS plans are being used increasingly for students in transition. This win-win situation assists students with disabilities to move into adulthood with real community jobs, and real earnings, while it helps schools and Voc Rehab stretch their already strained finances as they try to serve all students in their purview.

If you have a teenage son or daughter or student with a disability who might benefit from having a PASS plan, call the Rural Institute to discuss your situation and see if a PASS is possible. You can reach Roger Shelley in the Billings area at (406) 446-2065, or Marsha Katz in Missoula at 1-877-243-2476.

Montana Youth Leadership Forum for Students with Disabilities

The Montana Youth Leadership Forum (MYLF) for Students with Disabilities is a unique career leadership training program for high school juniors and seniors with disabilities. By serving as delegates from their communities at a four-day event on the campus of Montana State University-Billings July 24-28, 2000, young people with disabilities cultivate leadership, citizenship, and social skills.

It is critical that people with disabilities growing into adulthood learn to identify themselves with pride as individuals and as members of the accomplished disability community. By providing a framework of history and an atmosphere of encouragement, the MYLF offers peers with common challenges and experiences the opportunity to learn from one another.

Delegates gain access to vital resources related to assistive technology, community support, and self advocacy. Successful men and women with disabilities serve as role models in helping youth realize their abilities and obligations to pursue meaningful employment and contribute to society. The educational and motivational forum involves an intense schedule. Throughout the training, small "working groups" explore personal leadership and career plans. The key to the MYLF is leadership by example. Adults with disabilities who have traveled the same path these young people are facing serve as faculty and staff. Many other volunteers, some with disabilities and some without, help to make the program a success.

MYLF alumni take with them an obligation to follow through on goals outlined in "personal leadership plans" that they have written for themselves. In addition, follow-up activities include mentor phone calls to track progress of the "personal leadership plans", continue networking activities of the graduate, and recruit graduates as staff volunteers/mentors for future forums.

The delegates are chosen through a statewide competition that seeks students with disabilities who have leadership potential. Each applicant submits a standard form, an essay, and letters of recommendation. The group that is selected is representative of the state in terms of geographic, gender, economic status, ethnicity, and types of disabilities. It is hoped that all costs including transportation, are paid for through fundraising and corporate donations.

To obtain an application, contact the SUMMIT Independent Living Center at 800-398-9002.

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.

Libby Shaide, special education teacher, Fairview

Tracey Sunwall, special education teacher, Fairview

Diane Fladmo, Director, Prairie View Special Education Cooperative

"I feel very strongly that ...(these people) have earned exemplary status. This level of excellence, both in terms of direct student services and the required supporting documentation, is directly attributable to the work of these individuals. They are caring, extremely knowledgeable, dedicated professionals who epitomize the concept of a team approach to educating our special clientele."

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. 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 TRIC/PLUK Library. If you are interested in checking out any materials, please contact the librarian, Janice Sand at 1-800-222-7585 or e-mail at jsand@pluk.org. Materials will be mailed out anywhere in the state of Montana at no charge.

• Active treatment//YAI Nat. Institute for People with Disabilities 460 West 34th St, NY, NY 10001/Staff Training/V-STA105
• Baby sister for Frances Braille Special Collection/Hoban, Russell/Braille Institute 741 North Vermont Ave., Los Angeles, CA 90029/Books in Braille/VIS187
• Borrowers vol 1 of 2 Braille Special Collection/Norton, Mary/Braille Institute 741 N Vermont Ave., Los Angeles, CA 90029/Books in Braille/VIS198
• Building healthy minds the six experiences that create intelligence and emotional growth in babies and young children/Greenspan, Stanley, M.D./Perseus Books Group 10 East 53rd St., NY NY 10022/Infant/Toddler/Preschool/INF305
• Button box Braille Special Collection/Reid, Margaret S./Braille Institute 741 North Vermont Ave., Los Angeles, CA 90029/Books in Braille/VIS186
• Careers Opportunity for growth/Grandin, Dr. Temple/Future Hor