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PLUK News February/March 1999 Volume 13 Number 7/8
	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

Managed Care Contract to End School-to-Work Grants Awarded Legislative Scorecard Privacy Issues Occupy New Congress Work Incentives Improvement Act Battle over Discipline Still Not Over SGA Levels Increased Title 1 and IDEA Funds Can Be Combined Congress Revamps Job Training Medicaid Enrollment Campaign Supreme Court Decides Garret F. Case Vaccine Injury Compensation Going Well Olmsted Case Revisited Items For Sale

Spring Time is IEP Time IEP's Made in Heaven Things You Never Want to See in the IEP ASK PLUK??? Parent Corner Taxes, Taxes, Taxes Explosive Mood Disorder & Divalproex Antidepressant Effective for OCD Universal Testing for CF Recommended Brain Injury Tied to Stress Disorder What's New in the TRIC/PLUK Library? HONOR ROLL PLUK Publications Angels for $10!!! PLUK Facts PLUK Training Workshops

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Managed Care Contract to End

After much debate and soul searching, the 1999 Montana Legislature voted to terminate the State's $400 million contract with Magellan Health Services to provide managed-care for mentally ill Montanans who get public assistance.

This massive change was directed by a panel of six lawmakers on the Human Services Appropriations Subcommittee after they spent nearly two months studying and debating whether Magellan could salvage the program. In the end, too many complaints sounding the same themes again and again pushed legislators toward canceling the contract.

If the proposal from the Subcommittee makes it through the full Legislature, state health officials must issue contract termination notice to Magellan no later than May 1. The next step for the Legislature is the House Appropriations Committee taking up House Bill 2, the state's two-year spending plan. HB2 now contains the provision that mental health services will not be funded unless the state issues notice to Magellan.

Since the managed-care contract began in April of 1997, the company that won the $400 million five-year contract has changed hands three times. The changes have been troublesome to many consumers since the system has never quite worked out the details of providing service and paying providers in a timely fashion.

By the middle of April 1999, state health officials plan to start asking companies for bids to run regional managed-care systems replacing the current statewide program serving some 20,000 Montanans with mental illnesses. On July 2, a new company or collaboration of groups will be chosen to oversee subsidized mental health treatment, and the changeover is projected to take place November 2, unless Magellan pulls out early.

The dilemma that faces the State now is just what type of system is capable of managing mental health services for low income families. While the profit motive of managed-care companies seems to make it difficult to address the needs of the consumers, it is difficult for consumer-driven nonprofit corporations to assume the financial risk of the massive publicly funded system. How to provide cost effective services that meet consumer needs is the challenge for whatever mental health system emerges next.

Magellan Backs Out

Two weeks after the Legislature acted to end the managed mental health care contract, Magellan Health Services sent its letter of resignation to the Department of Public Health and Human Services.

Even though both sides in the five-year $400 million deal now say the contract should end, the bickering continues over how and when. In a letter dated March 1, Magellan told DPHHS it could legally leave Montana as early as March 8, but would stay through April 1.

Laurie Ekanger, Director of DPHHS disagrees. She says that Magellan must give six months notice to cancel the contract and state officials will work to ensure the company stays through September 1.

Magellan claims the state system is underfunded for what it aims to accomplish. The company says it lost $15 million in its first year of operation.

Legislators who have worked on the mental-health managed-care issue were taken aback by the abrupt tone of Magellan's notice. The Legislators say their main concern is ensuring that roughly 20,000 Montanans who use the system do not suffer. Sen. Mignon Waterman (D-Helena) commented: "It's scary that we have to do this, but this clearly is not a company that is committed to the best interests of Montana consumers."

School-to-Work Grants Awarded

The following school districts have been awarded funds to develop programs related to helping students make successful transitions from high school into employment or postsecondary education leading to employment: Absarokee (Amelia Eckstein), Belgrade (Charney Gonnerman), Bozeman (Yvonne Hanwiller), Butte (Herb Venner), Columbus (Fritzie Walker), Culbertson (Laura Lake), Cut Bank (Don Paulson), Frenchtown (Steve Chiovaro), Gardiner (Jaclyn Mavencamp), Hamilton (Becky Brough), Hardin (Kandi Luther), Havre (Howard Hahn), Helena (Sandy Quickenden), Kalispell (Shirley Spurgeon), Lavina (Ginny Horpestad), Lewistown (D.K. Slagel), Melstone (Mark Branger), Missoula (Cecilia A. Barr), Polson (Sherry Jones), Rapelje (Wayne Erfle), Superior (Allan Labbe), Valier (Terry Diede), and Victor (Jo Anne Stewart). If you would like more information about the specific proposals from these districts, call the PLUK Office at 1-800-222-7585. The names with each school district in the above list are the individuals to contact at the local level for information about the district's school-to-work project.

Legislative Scorecard

The 1999 Montana Legislature has compiled an extraordinary record in the first half of the session. After the first 45 days, the following has been accomplished:

• increased funding was allocated for K-12 education in a bill that originated in the Senate and moves on to the House;
• a children's health insurance program (CHIP SB 81) was sent from the Senate to the House;
• the Human Services Appropriations Subcommittee unanimously approved the refinancing plan that will see over 350 people who are on the waiting list for DD services get services during the next biennium. The cost of this proposal is over $18 million, all federal money. This is the biggest expansion of services that developmental disabilities has ever seen;
• Human Services Appropriations Subcommittee recommended a 1% increase in rates for providers in the developmental disabilities system;
• Human Services Appropriations Subcommittee also recommended a wage increase for direct-care workers in the DD system. This plan gives a direct-care worker a $.25 per hour raise each year of the biennium plus benefits. The money for this wage increase is to come directly out of the State General Fund;
• $131,140 were added to the DD budget to provide Extended Employment services for 41 individuals on the waiting list for supported employment services;
• The Human Services Subcommittee approved $50,000 in general fund to address emergency situations for individuals eligible for DD services. These monies will be matched with federal money and will be used in a variety of ways to resolve emergencies that could, if not addressed, result in consumers going to more restrictive services;
• Also approved was $50,000 for the Donated Dental Program. This was slightly less that what was requested ($58,000), but should be an adequate amount to keep this program going;
• Sen. Chuck Swysgood (R-Dillon) offered a successful motion to use $2.3 million earmarked originally for Medicaid to make up for the loss of Title XX dollars in the Developmental Disabilities Program budget. This money is available because of a decline in the use of Medicaid;
• Sen. Mignon Waterman made a motion to direct the Disability Services Division to study the closure of one of the two developmental disabilities institutions (Montana Developmental Center or Eastmont). This study would look at both institutions to determine which would be the most appropriate to close, would look at alternative missions for the institutions, and would outline a transition plan for employees should one of the institutions close;
• Sen. Waterman also made a motion to require that the Disability Services Division periodically report progress on the SPAM (Strategic Planning Across Montana) recommendations to the Interim Legislative Committee. The SPAM recommendations set priorities for the development of DD services over the next 5-10 years. Senator Waterman believes in the importance of these recommendations for the future of the disabilities system and wanted to underscore their importance by creating this legislative accountability;
• The Vocation Rehabilitation caseload increase was approved. This proposal involves the addition of 1Ã new vocational rehabilitation counselors who will be able to serve 65 additional people.

Altogether disability services fared very well in the first half of the Legislature. This positive response to DD proposals was truly amazing in light of the fact that almost every other area in the Department of Public Health and Human Services budget was cut. Sixty-seven people testified at the Developmental Disabilities hearing and 150 people attended. The Vocational Rehabilitation hearing was also well attended. The testimony at both these hearings was very affecting and Legislators were obviously moved by the accounts from individuals and families receiving DD and VR services.

Legislators have also commented that they are impressed that the disability community always says "thank you." If you would like to say thank you to members of the Human Services Subcommittee, here is how you can reach them:

Rep. Betty Lou Kasten

Sen. Chuck Swysgood

Rep. Beverly Barnhart

Sen. Bob Keenan

Rep. John Cobb

Sen. Mignon Waterman

Mailing Address: Capitol Station, Helena MT 59620

Phone messages: 444-4800

TDD: 1-800-832-0283

Fax: 1-900-225-1600 ($.45/minute)

e-mail: house@state.mt.us or/ senate@state.mt.us

Privacy Issues Occupy New Congress

Health care privacy is expected to be a hot topic on Capitol Hill this year.

Congress has until August to pass a law implementing the privacy provisions of the Health Insurance Portability and Accountability Act, which requires the government to set standards for keeping electronic health records confidential.

If Congress fails to meet the deadline, a proposal issued by the Department of Health and Human Services in September 1997 will serve as the basis for federal confidentiality standards.

During the last session of Congress, bills sponsored by Sen. Robert Bennett (R-UT), Sen. James Jeffords (R-VT), and Sen. Edward Kennedy (D-MA) were debated, and all three proposals are expected to be reintroduced this year.

Law enforcement authorities' ability to access health information is the area in which the proposals differ the most.

Sen. Bennett's bill says that law enforcement authorities must obtain some sort of summons, such as a subpoena, before they can look at health information. But this provision might not create much of a safeguard because subpoenas can be generated from lawyer to lawyer, without supervision.

While Sen. Bennett's bill offers no specific standards for reviewing a subpoena, Sen. Jeffords' bill requires law enforcement officials to show probable cause that the health information they are requesting is relevant to a law enforcement inquiry.

Sen. Kennedy's bill goes further. He says in his bill that medical records can be accessed only through a court order, and law enforcement officials must show that the information cannot be obtained any other way. In addition, the need for the information would have to outweigh the individual's right to privacy.

Whether a federal bill would preempt state privacy laws is another tricky issue. State laws tend to deal with privacy issues in a wide variety of ways.

For individuals with disabilities, these discussions of health privacy have great importance because right now it is unclear just how much medical information can be given out to government agencies. With electronic medical records, it is so much easier to pass records on via electronic mail, sometimes without the patient being aware that their records have been transferred or shared.

Work Incentives Improvement Act Moves Forward

Sen. Jim Jeffords and Edward Kennedy pushed hard last year for broad SSI/SSDI reform which combined encouragement to work with guaranteed access to health care and expanded options for long term support services. This same type of legislation is being reintroduced in the 106th Congress and support for its provisions is growing. On March 4, 1999, the Senate Finance Committee voted 16-2 in favor of the bill. It included no amendments. To date, 63 senators have signed on as cosponsors of the Work Incentives Improvement Act (S.331). With more than 60 cosponsors, the bill will have a filibuster-proof majority, making action by the full Senate all but inevitable. This bill is designed to do three things: (1) provide access to healthcare, (2) increase incentives for going to work, and (3) increase choices in services for adults with disabilities who work.

To find out what senators already are cosponsors, access the National Parent Network on Disabilities website at http://www.npnd.org or contact your senator directly at http://www.senate.gov.

An estimated 7.5 million Americans with disabilities depend on assistance from SSI or SSDI cash benefits and Medicaid or Medicare for medical care. The cost to the federal government for cash assistance alone is approximately $73 billion annually, with a predicted growth rate of 6% per year. Social Security disability payments are the fourth largest federal entitlement program. However, from a disability perspective, there is also a high personal cost inherent in these programs. In exchange for the social security safety net, most beneficiaries trade in their hope for personal and economic independence. Even though they want to work, less than 1% of the individuals receiving SSI and SSDI leave the Social Security rolls and become entirely self-sufficient. The disincentives to employment in the social security disability programs have been identified as one of the major causes of unemployment among people with disabilities. The inability to access health care and related supports from Medicaid or Medicare after employment is the primary disincentive.

The Jeffords/Kennedy bill is attempting to address the disincentives to work and provide people with disabilities with the opportunity to achieve self sufficiency without losing access to medical benefits.

Battle Over Discipline Still Not Over

In the last Congress, Rep. Bob Livingston (R-LA) tried to loosen federal restrictions schools face in disciplining special education students. Since then Rep. Livingston has resigned his seat in Congress over marital infidelities. This year, Reps. John Cooksey (R-LA) and Roger Wicker (R-MA) have replaced Livingston in the battle over disciplining IDEA-eligible students and introduced legislation to give local schools more flexibility in dealing with disruptive special needs students.

Cooksey's bill (H.R. 636) is nearly identical to the legislation offered by Livingston in the 105th Congress. The measure would remove the 45-day limitation for placement of a disruptive student in an alternative setting. It would also allow schools to remove a special needs student who "exhibits violent behavior" with "the intent to harm" while at school or a school function.

The provision would not apply to situations in which the disability causes the misbehavior--such as when a child with epilepsy strikes a teacher while experiencing a seizure.

The bill also contains language echoing a bill offered last year by Rep. Frank Riggs (R-CA) This provision would limit the penalty the U.S. Department of Education could impose on states that fail to provide services to students with disabilities ages 18 years or older.

Wicker's bill (H.R. 697) would completely strike the IDEA discipline provision and give states control over discipline matters. The bill would provide that "any decision relating to the establishment or implementation of policies of discipline of children with disabilities in school be reserved to each state education agency, or as determined by a state education agency, to a local educational agency."

Both measures have been referred to the House Committee on Education and the Workforce. Introduction of these two new pieces of legislation indicates that there may be another battle in the 106th Congress revolving around IDEA '97.

SGA Levels Increased

Adults with disabilities are able to earn a certain amount of money without jeopardizing their eligibility for Supplemental Security Income (SSI) This amount is called SGA or Substantial Gainful Activity. In the past an individual could earn $500 per month and still receive benefits, including medical coverage. On February 12th, Vice President Gore announced the amount of income Americans with disabilities receiving Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) can earn was raised from $500 to $700 per month, while still allowing the receipt of cash and medical benefits.

Title 1 and IDEA Funds Can Be Combined

Federal regulations took effect in November 1998 that allow local school districts to combine IDEA Part B special education funds with other state, local and federal funds (e.g., Title 1 monies) to carry out school-wide program activities. In the past school districts have not been allowed to mingle monies from special education and Title 1. These new regulations will allow districts to design academic support programs like Study Centers that benefit students who are eligible either for special education or Title 1. Combining dollars from both programs may make possible an expansion of support services and more efficient use of the money that is available.

Congress Revamps Job Training

In response to criticism that federal job training and placement programs were antiquated and redundant, Congress approved a sweeping overhaul that gives individuals and states new power to design systems tailored to their specific needs. The legislation consolidates more than 60 federal programs into block grants that states will administer. Individuals seeking job training will receive vouchers they can use to purchase training services from any appropriate agency or program. The legislation also makes changes to the Job Corps program and reauthorizes vocational rehabilitation and adult literacy programs.

Under this act, adults will use individual accounts to purchase job training services. One Stop Service centers will provide information about opportunities and available aid. One thousand such centers are already in operation nationwide. State and local job training providers now have to meet new performance standards. Providers have to report publicly their graduation and job retention rates and average earnings of graduates. Special emphasis is placed throughout this Act on services to individuals with disabilities and the involvement of disability organizations in workforce policy-making at the state and local level.

Medicaid Enrollment Campaign

President Clinton has begun a campaign to enroll more children in Medicaid. The goal is to enroll 5 million of the estimated 10 million eligible children in the next 5 years. To encourage parents to use federal health benefits for their children, the campaign has a toll free telephone number which is being posted on commonly used household products. The number is: 1-877-KIDS-NOW.

Supreme Court Decides Garret F. Case

On Wednesday March 3, 1999, the U.S. Supreme Court by a 7-2 vote issued a ruling in the Cedar Rapids v. Garret F. case saying that public schools could be required to provide one-on-one nursing care for students with disabilities who need such care in order to attend school. Under the Individuals with Disabilities Education Act (IDEA), school districts are not required to provide medical services, but the Supreme Court has ruled that medical services means only those services which have to be provided by a doctor. Other health related services that can be provided by a school nurse or an aide are services that school districts must provide at their expense.

Under the ruling, a school district in Iowa must pay to provide nursing care for Garret Frey, a student who is quadriplegic and on a ventilator.

Writing for the court majority in the 13-page opinion, Justice John Paul Stevens rejected the school district's concerns about the financial burdens to provide the services that Garret needs to stay in school. "The district may have legitimate financial concerns, but our role in this dispute is to interpret existing law," Justice Stevens said. "This case is about whether meaningful access to the public schools will be assured." Stevens ruled that IDEA clearly required school districts to fund such services to guarantee disabled students were integrated into public schools.

In the Garret F. case, the 8th Circuit Court ruled originally that all services that can be provided in school by a nurse or qualified layperson must be provided at school district expense. The Supreme Court decision basically reaffirms the lower court's ruling.

Garret F. was injured in a motorcycle accident when he was four. His mental abilities were unaffected, although he does have a spinal cord injury which leaves him paralyzed from the neck down. At school, he needs occasional nursing services for help with eating, drinking, positioning, and catheterization. The district previously estimated the annual cost for these services at more than $30,000. All of these services can be provided by a nurse or an LPN under a nurse's supervision. None of these services requires a doctor to be present.

In 1993, Garret's mother asked the school district to pay for the health care services he requires. She believed that the district must provide the services for Garret under IDEA. The Cedar Rapids, Iowa, school district attorney argued that the district should not have to provide (pay for) the child's care, saying it was not legally obligated to provide medically-related services.

This ruling in the Garret F. case has the potential for far reaching implications. School districts now clearly have the obligation to provide medically related services without any cost to the students' parents.

Vaccine Injury Compensation Going Well

For the past ten years, the federal government has had a Vaccine Injury Compensation Program to compensate families financially when children have been injured because of required vaccinations.

Since the program began on October 1, 1988, there have been 4,577 cases: 1,356 were found worthy of compensation and 3,221 were dismissed. More than 1,300 individuals and families have received $946.7 million. In fiscal year 1997, the average award for post-1988 claims was $883,049. Only four claims were filed in civil courts for pertussis vaccine injury in 1997, the lowest number since 1982. Manufacturers filed 49 new drug requests with the FDA for non-AIDS vaccines in 1997, compared with 29 in 1986, before the vaccine compensation program was instituted. This may be an indication that drug companies are willing to test new vaccines because they no longer fear being sued for damages. Currently the VICP trust fund contains about $1.3 billion.

Under federal law, any new vaccine licensed and recommended for routine administration to all children will receive VICP coverage.

The peak for vaccine claims was in 1986 when 255 such claims were filed. Suits against physicians and other vaccine providers now are very low.

Despite the program's success, administrators are growing increasingly concerned about negative public perceptions of vaccine risk. The use of the vaccine compensation program over the past ten years is a clear indication that very few children receive any injury related to standard vaccinations and that there is no substantiated cause for alarm in allowing children to be vaccinated unless the children already have known neurological problems or are currently ill.

Olmsted Case Revisitied

The U.S. Supreme Court has agreed to hear the Olmstead v. L.C. case from Georgia in which the Court will be deciding whether some people with mental disabilities must be given a chance at placement in group homes or other community-based programs rather than in institutions.

Lower courts have said that because of the ADA requirement for integrated accommodations, Georgia must provide two individuals with mental illnesses placement in community-based programs rather than institutional settings.

Montana has signed on as a friend of the court in this case. Many disability advocates have complained to Attorney General Joe Mazurek about the position that Montana appears to be taking in this case. In a letter to PLUK, Attorney General Mazurek explained the State's position in this way:

"Contrary to misinformation that was initially circulated regarding the Olmstead case, the friend of the court brief being submitted and the briefs of the State of Georgia (the petitioner in the case) are not trying to overturn the Americans with Disabilities Act (ADA) or to strike that entire Act as unconstitutional. The issues before the Supreme Court are very limited. The briefs seek only to clarify the scope of the states' duties under the ADA. The particular concerns raised by Georgia are:

• to what extent a state may lawfully determine the number of individuals who can be served at one time in a particular program, and
• whether the state has the ability to manage its finances in a fiscally responsible manner.

The services at issue are those under a Medicaid waiver. They are designated to serve a specific number of individuals according to federal criteria that have been approved by the United States Department of Health and Human Services' Health Care Financing Authority (HCFA).

The petition filed by Georgia asking the United States Supreme Court to consider the case also asked the Court to rule on whether, if the ADA requires significant expansion of community-base services, Congress had the power to impose such a burden on states without providing the needed additional funding...."

In his letter to PLUK, Attorney General Mazurek cited the following reasons why he and others in state government were persuaded that Montana should side with Georgia in this case:

• the issues involved are far-reaching;
• the mandate for integration in the ADA is not as encompassing as the lower courts have interpreted it to be;
• concern that the practical implications of the lower court decision to insist on community-based placements may have the effect of ultimately limiting services;

Mr. Mazurek also offers the following comment: "The lawsuit Montana is currently involved in, Travis D. v. Eastmont Human Services Center, presents all of these issues to a federal district court. A decision by the United States Supreme Court in Olmstead should provide the guidance needed to decide these issues without continued expenditures on litigation that will otherwise be necessary."

For more information on the Olmstead case, contact: Joseph P. Mazurek, Attorney General, Department of Justice, 215 North Sanders, P.O. Box 201401, Helena MT 59620-1401.

Items For Sale

The following items have been offered for sale:

• Child's Quickie II Wheelchair, teal in color, two different seats with chair; $3,000 new, $400 used. Condition like new.
• Rifton Large Child Tricycle with abduction wedge, back and side supports with seat belt, shoe holder, and basket; like new, $700 new, now $250 or best offer.
• Water Hydraulic Bath Chair with swivel seat and water spout. $1,000 new, now $150 or best offer. Will hold person up to 200 pounds.
• Bath Transfer Bench with back and adjustable legs.
• Guardian Large Youth Walker with 5" wheels; collapsible. Purchased less than a year ago, $30.

If interested in any of the above items, contact Dianne at 406-543-9310.

Spring Time Is IEP Time

Though Individualized Education Programs (IEP's) can have their anniversary dates at any time during the year, most IEP's are reviewed annually in the spring. Now is a good time for parents to think about and plan for what they would like to see in their child's IEP for the next school year. Here are some questions to consider:

• Has the current IEP worked well? What are the pluses and minuses of this year's program?
• Has your child experienced any significant changes like operations, changes in the family, changes in medications or treatments since the last IEP was written?
• Do you have adequate information about your child's present level of performance: Have you received progress reports? Do progress reports provide information to you about how your child is doing on the goals and objectives in the present IEP?
• Are you aware of any testing that may need to be done? Is your child due for a comprehensive three year reevaluation? Under IDEA '97, it is not necessary to repeat all of the original standardized testing if there is enough information to show from the student's work samples and classroom performance to show whether or not a disability still exists. However, you can certainly ask for comprehensive testing if you think it is necessary.
• What academic goals do you think are realistic for your child? Does your child need some self help, social or behavioral goals? Vocational goals? Adaptive physical education?
• Is behavior a problem for your child? Has your child had a recent functional behavioral assessment? Is there a need for a positive behavior plan in the next IEP?
• What would your child like to see in the next IEP? Is he or she ready to participate in writing the IEP? Has your child received instruction in self advocacy skills? Should self advocacy be a part of the next IEP?
• Is your child receiving his or her education in the regular classroom? If not, would your child benefit from a regular classroom placement with appropriate supplementary aids and services? Remember your child does not need to be in a separate special education class in order to receive special education. Special education can be delivered in the regular classroom.
• If your child requires supplementary aids in order to remain in the regular classroom, be sure that these supplementary services are outlined specifically in the IEP. Supplementary aids can include things like the use of a computer or communication device.
• Be sure that the goals and objectives in your child's new IEP show connection to the general education curriculum? Does your child's IEP reflect high expectations for learning?
• In order to benefit from education in the regular classroom, does your child require modifications of the regular curriculum or program? Be sure that these modifications are clearly spelled out in the IEP.
• How will regular education teachers be involved in the IEP process? Will next year's teacher or teachers participate in planning the program? How will the necessary curriculum modifications or the requirements of a special discipline program be communicated to all teachers?
• Does your child require an assistive device like a computer or a communication device in order to complete academic goals or to benefit from education in the regular classroom? Assistive technology can be written into the IEP at several points--under goals and objectives, as a related service, or as supplementary aids to the regular education program.
• Does your child need a modified grading scale? If so, the modified grading system needs to be spelled out in the IEP.
• Is your child's educational placement appropriate for his or her age and educational needs? Does your child have social contact with nondisabled children of the same age?
• Does your child participate in the extracurricular activities available to other students?
• What related services are necessary for your child to benefit from his or her education? Does your child need speech, physical therapy, occupational therapy, transportation, rehabilitation counseling, social work services, school nursing, or school counseling in order to benefit from his or her education? If your child receives school counseling, there should be goals in the IEP related specifically to what is supposed to be accomplished in counseling.
• Does your child take medication at school? How will it be administered and by whom?
• Does your child need (and qualify for) an extended school year (e.g., summer school)? If an extended school year is needed, be sure that goals for that program are written into the IEP. Be sure that data is collected that will show whether or not your child regresses when there are school vacations. Does it take your child a long time to recoup skills after a break in school?
• Should your child be exited from special education? Should your child be placed on monitor status as he or she gradually makes the transition from special education into regular education? Or does your child require more, rather than fewer, special services for next year?
• Is your child 14 years-old? If so, your child should have a statement in the IEP of the transition services that he or she is anticipated to need. If your child is 16 or older, transition services should be outlined in the IEP. The IEP should also state what requirements the student will need to meet in order to graduate and when the graduation is anticipated to occur.
• If your child is 18 or older, he or she has reached the age of majority. Your child then becomes the signer of the IEP instead of you as a parent. You still need to be invited to the IEP team meeting and can participate fully as a team member.
• How has the communication been between school and home? Consider including in the IEP some regular way for teachers to communicate with you.
• The following special factors must considered in writing an IEP for a student who has these needs: braille instruction, orientation and mobility, communication, and English as a second language.

When the school notifies you that it is time to write a new IEP, be sure to respond. If the school district has suggested a time for the meeting which is inconvenient for you, be sure to notify the school that you cannot come at that time and suggest some alternative times. If you fail to respond, the school district can go ahead and write the IEP without you present. You do not want to miss out on the important opportunity to shape your child's special education program. If you need help in preparing for the IEP, be sure to contact your PLUK representative for guidance.

IEP's Made In Heaven

At their best, IEP's are a marvelous invention and every child in school should have one. The very best IEP's look like this:

• Incorporate the parents' best hopes for the child and the child's own hopes for the future
• Point toward a future of full involvement in the community
• Embody high expectations for accomplishment
• Recognize the need for individualization and accommodation
• Emphasize functional skills
• Use "people friendly" language
• Represent a realistic assessment of what can be done in the course of a school year
• Are workable, usable documents that will govern classroom activities every day
• Are written as a team at the IEP meeting
• Are flexible documents that can be changed as the child changes.

Things You Never Want to See in the IEP

The IEP is a valuable tool for describing your child's educational program and for keeping track of your child's progress toward individual goals. A carefully designed IEP can focus resources and clarify what should be taking place in the classroom. On the other hand, a poorly written IEP can lead to vagueness in programming and a lack of accountability. Parents should watch for the following which are characteristics of ineffective IEP's:

• No reports of the progress made on the current IEP
• No information about the student's current level of performance (e.g., goals should relate to the current level of performance)
• Too many goals (e.g., four or five goals are usually enough)
• Vague and unmeasurable goals and objectives
• The same goals being repeated year after year
• No specificity as to the amount and types of related services needed
• Goals the same for every child in the special education class
• Goals unrelated to academics or to functional, real life activities
• Placement determined before needs established
• Regular classroom not offered as an option
• Goals written for school staff rather than for the child (e.g., The teacher will meet with the student for fifteen minutes after school to assist with homework.)

ASK PLUK???

The following questions are recent inquiries received by PLUK staff.

Q: I read in a recent PLUK News about a national study that indicated medication provided the most help for children with ADHD. When I brought this study to the attention of some local educators, I got the response: "Doctors and drug companies control these studies. You can't believe anything they say." How would you respond to this kind of statement?

A: Hannah Whitall Smith has said: "The true secret of giving advice is, after you have honestly given it, to be perfectly indifferent whether it is taken or not and never persist in trying to set people right." Much as you might like to "set people right" and have the teachers who work with your child understand ADHD and the research concerning its treatment, there is no way that you can force people to accept new information. You have provided some thought-provoking findings from a legitimate, major study, but you cannot expect that others will necessarily accept the information and change their own thinking.

If an educator shows interest in the study, it might be helpful to provide a copy for the individual to read and form his or her own conclusions. Copies of the National Institute of Mental Health/U.S. Department of Education study can be obtained from the NIMH web site or the PLUK Library.

Q: I have been asking for a positive behavior plan for my seventh grade LD son, but I am experiencing a great deal of resistance. The principal is telling me that my son just needs stricter discipline and that I should back the school in its efforts to get my son "in line." Meanwhile my son is getting into trouble every day. He is very close to being suspended from school for the third time this year. He hates school and does not want to go because he says he can't seem to avoid problems. I don't know what to do. Can you help?

A: It is obviously doing your son no good to continue to have behavioral problems at school and have no help in learning to control his behavior. Often adults want to manage children's behavior by using punishment or "consequences" to decrease the behaviors they don't like. The trouble with punishment is that it makes clear what is not acceptable, but leaves it up to the individual to discover how to behave well.

Many children with learning disabilities continually get into trouble at school because they are inept socially. They don't read social situations well and can easily be led into irresponsible behavior. Unfortunately, it is usually the LD child who gets caught, even if a whole group of children have been misbehaving.

Ask for an IEP Team meeting to discuss your son's behavior. Request that the school psychologist or some other qualified professional do a functional behavioral assessment to determine under what circumstances your son is misbehaving. Are there patterns? Time of day? Particular class? Particular group of students? Structured vs. unstructured times of the day? Are there particular social skills that your son does not have? Negotiation skills? Assertiveness skills?

Once a functional behavioral assessment has been conducted, the information from that assessment can be used to target skills that your son needs to be taught. The positive behavior plan can be developed around those target skills. The IEP Team may also want to write a special discipline plan for your son so there are consequences for misbehavior, but there are also built in opportunities for your son to learn new skills instead of repeating the same mistakes over and over again.

Q: My nine year-old son has been identified as gifted and learning disabled. He has high verbal intelligence but his ability to write (written expression) is very limited. School is frustrating for him because he cannot express his ideas well in writing and he feels as though he is not really able to show his intelligence. I have met with his third grade teacher several times, and she is aware of my son's diagnosis but she says he is doing fine and that I am being overprotective. I have been asking that my son be encouraged to use word processing for written assignments, but his teacher is resistant to this idea because he would be the only one using a computer and would feel different. Should I back off and leave this alone or should I try to do something to help my son feel less frustrated?

A: If your son is experiencing frustration at school, it is certainly important to try to understand his frustration and determine if there are appropriate ways to help him be more productive. Because he is so bright verbally, he is no doubt doing well in the third grade curriculum. Intellectually, he probably finds the concepts in reading and math relatively easy to understand and apply. The demands for written expression may not be extensive enough yet to cause him any serious problems. Third graders do a certain amount of written work, but much of the time they are required to provide only short answers that do not require advanced writing skills. The frustration your son experiences is probably not due to the specific third grade requirements, but to the discrepancy between what he can conceptualize and what he can actually get down on paper. In other words, he cannot meet his own standards for performance.

It will probably be helpful to hold a Section 504 meeting to determine what accommodations your son needs in order to feel successful in school. Over the long haul, it will be useful for your son to become adept at word processing. He may find that word processing is more useful for him than handwriting because it is so easy to make corrections.

Your son's teacher may feel a little threatened because you appear to be unhappy with your son's school program. Do what you can to reassure her that her teaching is just fine. Your son has an unusual set of educational needs which may require treating him differently from the typical third grader. Asking for accommodations for your son does not imply any criticism of the teacher or her methods. You are only trying to help your son acquire the skills he needs to work around his deficits in written expression.

Q: Our 16 year-old daughter has mild mental retardation and a speech impairment. She is a junior in high school. We are concerned because her school program is the same each year and she doesn't seem to be learning anything that will prepare her to live on her own when she graduates from high school. When we bring this up with her teacher, the teacher says that she is limited in what she can do because our daughter is the only student she has with more severe disabilities. Our high school has no vocational program for students who are retarded. What should we do?

A: At sixteen, your daughter should have a transition plan as part of her Individualized Education Program (IEP). In this plan, there should be information about what your daughter is likely to be doing after graduation. Is she going to live at home or on her own in the community? Is she going on for further training or planning to get job? How independent can she be after graduation? Will she always need some supervision or can she be relatively independent?

The transition plan should also be based on an evaluation of your daughter's skills in such areas as self help (e.g., grooming, health); daily living (washing clothes, cooking, cleaning, shopping, budgeting and money management, and general decision-making); communication skills; and vocational skills. The IEP then should reflect the skills that your daughter needs to work on to prepare for adult living.

From what your daughter's teacher has said, it appears that the teacher does not know exactly what to do for transition planning. It is possible that the teacher and school district could use some technical assistance to help with the evaluation of your daughter's transition needs. There is an expert in the Office of Public Instruction who could provide the district with technical assistance on transition. Call Martha Lehman at 444-1579.

Q: My daughter was recently diagnosed by a clinical psychologist as having a nonverbal learning disability. No one at her school seems to know what this means. Is this a disability which will make her eligible for special education? She certainly needs help in school!

A: Children with nonverbal learning disabilities tend to display academic difficulties in all subjects when more complex information processing and problem-solving are required. In other words, these children are not as likely to be identified as having a reading problem or a math problem. Instead they will display poor performance in many subject areas. Typically these children's academic difficulties tend to include early problems with handwriting (e.g., graphomotor skills), problems in reading comprehension, mathematical reasoning, and science tasks that involve problem solving and complex concept formation. Areas of academic strength in these children include word identification skills in reading, spelling, and verbatim memory for oral and written verbal material. Children with NLD have also been shown to have social/behavioral problems, including difficulties adapting to novel situations and low levels of social competence.

A diagnosis from a professional outside of the school system will not necessarily serve to verify a child's eligibility for special education. In order to be eligible, your daughter would have to display a severe discrepancy between ability and performance in one of the following areas: oral expression, listening comprehension, written expression, basic reading skill, reading comprehension, mathematics calculation, or mathematics reasoning.

Ask to have your daughter tested by school district personnel for learning disabilities. Make sure that the testing includes achievement measures that go beyond rote learning because your daughter is likely to score well on identification of individual words or on basic calculation. She needs to be tested on higher level thinking skills that require reasoning and complex problem solving. It is in these areas that she is likely to show a discrepancy that will make her eligible for special education.

Parent Corner

Items of interest to parents

The Schwab Foundation

The Schwab Foundation for Learning provides customized literature searches and information packets on educational topics related to learning disabilities. The Foundation can be reached toll-free at 800-230-0988. The Foundation also has a new web site featuring LD Resource Consultants, information exchanges and more. Visit the site at: http://www.schwablearning.org.

HEATH Electronic Newsletter

HEATH, the national clearinghouse on postsecondary education for individuals with disabilities, has started a new electronic newsletter. The electronic newsletter replaces the former print version. It is published four times per year and contains lots of useful information. To subscribe to the newsletter, send an e-mail message to: heath@ace.nche.edu.

New from Don Johnston

Start-to-Finish Books for students who are significantly behind in reading have been developed by the Don Johnston Company. Developed in collaboration with special education teachers, university language and learning specialists, speech-language pathologists, and reading specialists, Start-to-Finish Books can be read independently by students who are reading at the second or third-grade level. Subject matter is appropriate for students from fourth grade through high school. For more information, call the Don Johnston company at 800-999-4660.

Did You Know?

Ninety-four percent of Montana's students graduate from high school. Over 70% of Montana's high school graduates participate in the ACT or SAT exams. The results of both tests show Montana students consistently ranking among the top-scoring students in the nation. Montana's students consistently exceed the national average in reading, math, and science proficiency. In both the National Assessment of Education Progress (NAEP) and the Third International Mathematics and Science Study (TIMMS), Montana students have outperformed students in 40 of the 41 countries (all but Singapore) in science, and 35 of the 41 countries in math.

GED on TV

GED classes will be available soon through Montana Public television. For more information, call 1-800-823-GRAD.

State Improvement Grant (SIG)

Montana has been notified that the State Improvement Grant for Special Education was not funded. Many parents, educators and OPI staff worked hard on this plan and are of course disappointed not to be successful. The plan is currently being refurbished and will be resubmitted in the next round of applications. If Montana is successful in receiving a SIG grant it will mean that the State will be able to do additional training of staff in best practices for teaching special education. For more information about the SIG grant, contact Susan Bailey-Anderson at 444-2046.

Special Clothing

Adrian's Closet provides a large array of fashionable clothes for children who use wheelchairs. Call 800-831-2577 for a free catalog or visit Adrian's Closet website at http://www.adrianscloset.com.

Celebration at CDC

CDC will be hosting a celebration for all children on March 27th from 1:00 to 3:00 p.m. at the Missoula office. This is a costume party honoring Disabilities Awareness Month. There will be awards and activities and a raffle for prizes. A dress up trunk will be available at the event. Kids, parents, grandparents, friends and families are all invited. For more information, call Val at CDC Missoula (549-6413 ext 125).

Teleconference on Work Incentives

On April 21 from 1:00-3:00 p.m., the Rural Institute on Disabilities will offer a teleconference in which the participants will learn (a) how PASS and IRWE Accounts can be used to save for work-related expenses, (b) how to access work incentives, and (c) how to advocate with the Social Security Administration. For more information, contact Marlene at 406/243-6354.

Support Group In Missoula

CDC is offering a monthly support group for parents whose children have seizures. The group will meet at CDC/Missoula on the second Wednesday of every month at 7:00 p.m. The plan is to offer personal support and information. Respite will be provided at the CDC Respite House by Brent Kellogg. Please call Suzanne at 549-6413 ext 123 if you plan to attend or are in need of respite care.

Medicaid HMO Plan

A Medicaid HMO Plan went into effect in Lake, Flathead and Lincoln counties on March 1, 1999. With the creation of this HMO, children (persons under 21 years) or adults with disabilities now have the choice to participate in the HMO or the current Passport program. For information on this change and the potential impact on Medicaid services, contact:

Patient's Choice Health Network

Glacier Community Health Plan

1297 Burns Way, Suite 3

Kalispell MT 59901

406-758-6900 or 1-800-781-1414.

Learning Weekend

The Montana School for the Deaf and Blind is holding a Family Learning Weekend June 4-6, 1999. This weekend provides opportunities for families of children with sensory impairments to learn about deafness, share their experiences with other families, and learn how to communicate with their children with hearing impairments.

In addition to the basic information about hearing impairments, there will also be presentations by audiologists, computer specialists, PLUK representatives, transition specialists, speech therapists, teachers of the deaf, assistive technology specialists, and experienced parents. Child care and recreation for the children (siblings included) will also be available at no charge. Families will be reimbursed for mileage at the current state rate. For more information, contact MSDB at 1-800-882-6732.

Mark Your Calendar

The 6th Annual Institute for Issues in Developmental Disabilities at Montana State University in Billings will be June 10-11 from 8:00am-4:00pm in the Education Building Room 102. The featured speaker will be Karen Topper, a Behavioral Consultant from Montpelier, Vermont. Registration fee is $100.; conference and one graduate credit fee is $180. For more information, contact Dr. Barb Ayres at 657-2338.

Reading Challenge Kits

The U.S. Department of Education is providing free kits to assist communities in creating after-school or summer tutoring projects to make sure that all children learn to read well and independently by the end of third grade. The Resource Kit, which is now available on-line, includes:

• A fact sheet on American children's reading performance,
• Background information on the America Reads Challenge,
• Checkpoints for Progress for teachers and parents,
• How to form a community coalition,
• Tip sheets for serving children most in need of help,
• How to recruit and train volunteers,
• A fact sheet on the new Reading Excellence Program,
• Links to research on literacy, including the recently released report: "Preventing Reading Difficulties in Young Children."

Items in the Resource Kit can be found at: http://www.ed.gov/inits/americareads/resourcekit/.

The America Reads Challenge website is at: http://ed.gov/inits/americareads/.

Help for LD Med Students

Medical H.E.L.P. (Higher Education for Learning Problems) is a remedial program for medical students and physicians who have learning problems or ADHD and have had difficulty passing standardized tests. The program is five weeks in length and is offered three times a year. Physicians may come for individual tutoring for 7-10 days. For additional information, contact guyer@marshall.edu or call 304-696-6315; Renea Clark, Coordinator and Dr. Barbara Guyer, Director.

Education Information on the Web

A wide variety of information concerning K-12 education is now available to parents, educators and policymakers with the advent of a newly launched government web site. The National Center for Education Statistics (NCES), the U.S. Department of Education's data-gathering agency for educational statistics (http://nces.ed.gov), is introducing the K-12 Practitioners Circle (http://nces.ed.gov/practitioners), a web page addressing the interests and needs of K-12 teachers.

The web site will alert users to the latest NCES publications on significant education issues based on the Center's national surveys and studies. Web page users will be linked, as well, to complete text or summaries of NCES studies and reports.

In its Hot Issues section, the page will spotlight NCES findings on both continuing and emerging education issues. For example, Hot Issues currently explores eighth grade performance in the arts and civic development.

The page's Research Findings section will introduce educators to a broad array of findings culled from recent NCES studies. Teacher job satisfaction, at-risk students, and the role of nonresident fathers in children's school performance are among the section's current subjects.

A Resources section informs readers of the wide range of NCES materials available through reports, guides, kits, findings, and web pages.

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.

Explosive Mood Disorder Responds to Divalproex

Children and adolescents who are frequently disruptive and aggressive often get labeled as oppositional defiant (characterized by defiance of authority) or conduct disordered (typified by extreme disregard for the rights of others). But these are sociological, not psychological terms. They do not identify what is disordered, what the causes might be for the disorder, or what the treatments ought to be.

The newer concept of aggressive disorders addresses more precisely what is wrong with a group of disruptive children and adolescents, but this may also be too broad a category. There are actually four overlapping subtypes of aggression and four corresponding types of medication to use in treatment.

One subtype is characterized by impulsivity; often, attention-deficit hyperactivity disorder is diagnosed and stimulants are prescribed. Another group, characterized by paranoia and misinterpretation of others' intentions, is treated with low-doses of antipsychotics.

Individuals prone to violence toward themselves and others represent a depressive subtype that is often prescribed antidepressants, while children with irritable mood swings typify a fourth type. This fourth type has proven to be difficult to treat with medication, but a pilot study conducted by Dr. Stephen J. Donovan at Columbia University has shown that the anticonvulsant drug divalproex may be useful in treating children with extreme, irritable mood swings.

In Dr. Donovan's study, all of the participants satisfied criteria for extreme aggression, which he calls explosive mood disorder (EMD). These children had explosive tempers, mood lability, symptoms persisting one year or longer, and impairment in two or more areas (e.g., poor academics, trouble with the law, substance abuse).

When 10 adolescents who met EMD criteria were treated with divalproex for 5 weeks, temper outbursts dropped from a mean of 6.5 to 0.1 per week. Lability scores declined from 3.8 to 0.5, and global assessment of function rose from 37.8 to 65.7

A double-blind, placebo-controlled crossover study found similar effectiveness for divalproex. Of eight adolescents who completed the trial, seven showed significantly more improvement with divalproex than placebo; one improved more with placebo.

Dr. Donovan speculates that EMD may be a mood disorder or may represent a primary failure or delay of developmental mood regulation.

EMD seems closely linked to self-medication with marijuana. Eight of 10 adolescents in the open-label pilot study carried diagnoses of marijuana dependence or abuse and expressed a specific preference for marijuana over alcohol and other drugs.

The adolescents reported that they used marijuana to "chill out"--to relieve irritable or angry states. Divalproex resulted in a "remarkable" drop in marijuana use, from a mean of 24.8 joint equivalents per week to 2.6.

Marijuana has been shown to have a mild anticonvulsive effect. So the use of marijuana may well have a biological basis since prescribed anticonvulsants have a similar effect of calming the individual who displays extreme irritable moodiness.

Source: Sherman, C. (Feb. 1999). Explosive mood disorder responds to Divalproex. Pediatric News, p. 27.

Antidepressant Effective for OCD

Results of a year-long study suggest children with obsessive-compulsive disorder may benefit from the selective sertonin reuptake inhibitor fluvoxamine (Luvox) as long-term therapy.

Dr. John T. Walkup of Johns Hopkins Medical Institutions in Baltimore and investigators at 10 other sites studied 99 children with obsessive-compulsive disorder (OCD) aged 8-17 years for 1 year. The children received an average treatment dosage of about 50mg/day.

Results of using the medication were excellent with an average 40%-50% improvement in scores on the Children's Yale-Brown Obsessive Compulsive Scale and another global outcome measure.

An important finding of the study showed that children who showed improvement on the drug during initial treatment continued to improve over the next 4-6 months. Children who improved on the medication appeared to maintain treatment gains over the duration of the study.

Source: Bates, B. (Feb. 1999). Antidepressant found effective for long-term OCD, Pediatric News, p. 34.

Universal Testing for CF Recommended

Cystic fibrosis is most common lethal inherited disease in whites--1 in 20 whites is a carrier of the CF gene, discovered on chromosome 7 less than a decade ago. The gene occurs in 1 of 40 Hispanics, 1 in 70 blacks, and 1 in 80 Asians.

Since CF causes severe impairment and treatment is most effective when begun early, experts are beginning to argue that all infants should be tested for CF so that treatment begins as soon as possible.

The median age of survival is now 30-31, a considerable improvement over 10 years ago. However, the average age at diagnosis of CF has not changed since 1980. Although 65% of children with CF are diagnosed during their first year of life, the average age at diagnosis is 4 years for those without a family history of CF. Ten percent of individuals are diagnosed after they reach 10 years of age.

Recent research indicates that diagnosis when children are presymptomatic has significant impact on long term prognosis. This is most likely because early diagnosis allows the institution of more aggressive antibiotics and better nutrition before inflammation, infection, and bronchial problems set in.

Early diagnosis significantly reduces rates of colonization with Pseudomonas. Colonization with this organism has previously been shown to reduce the life span of individuals with CF by about 10 years.

Other researchers have shown that children diagnosed in the newborn period have decreased hospitalization rates during the first year of life and a slower decline in pulmonary function up to 20 years to age than children diagnosed the conventional way.

One Danish study showed neonatal screening significantly improved survival. Results from a U.S. study on the impact of newborn screening on survival should be available in the next 3-5 years.

In addition to the health benefits for the affected child, newborn screening can decrease parental anxiety that comes with caring for a sick child without a diagnosis. It also gives parents valuable information for their future reproductive plans.

There are several ways to conduct newborn screening. The usual screening process involves a blood test done at 1-2 days of age. The test has a sensitivity of 97.4%, which makes it more specific than the phenylketonuria (PKU) screening test.

If levels are high, some centers will repeat the test at 2 weeks of age. If the second test is positive, infants are then referred for DNA testing. Other centers perform DNA testing if the first blood level is elevated.

Samples are usually analyzed for the delta F508 mutation. Seventy percent of individuals with CF have at least one delta F508 mutation. The sweat test, which is best performed at an approved CF center, can then make the diagnosis conclusively.

Newborn CF screening is mandatory in Colorado and Wisconsin and voluntary in Connecticut and some parts of Massachusetts and Pennsylvania.

Brain Injury Tied to Stress Disorder

The risk of developing Post-Traumatic Stress Disorder (PTSD) after mild brain injury is higher than previously thought.

A study of 79 people who suffered mild brain trauma in motor vehicle accidents found that 14 percent had acute stress disorder immediately after the accident, and 84 percent of these went on to develop Post-Traumatic Stress Disorder.

Current findings suggest that early intervention in acute stress disorder may prevent development of chronic stress conditions following mild traumatic brain injury.

Source: Bryant, R.A. Brain injury tied to stress disorder. American Journal of Psychiatry.

learned that there was in me an

invincible spring.

Albert Camus

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 1-800-222-7585. Materials will be mailed out anywhere in the state of Montana at no charge.

1. A.D.D. and success Weiss, Lynn, Ph.D.
2. First star I see Caffrey, Jaye Andras
3. Power parenting for children with ADD/ADHD A practical parent's guide for managing difficult behaviors Flick, Grad L., Ph.D.
4. Running on ritalin A physician reflects on children, society, and performance in a pill Diller, Lawrence H., M.D.
5. Understanding ADHD Attention Deficit Hyperactivity Disorder Green, Dr. Christopher; Chee, Dr. Kit
6. Helping your hyperactive/ADD child REVISED SECOND EDITION Taylor, John F., PH.D.
7. Hyperactivity hoax How to stop drugging your child and find real medical help Walker, Sydney III, M.D.
8. Twitch and shout a touretter's tale Handler, Lowell
9. Challenge to independence Vision and hearing loss among older adults Boone, Steven E.; Watson, Douglas; Bagley, Martha
10. Asperger syndrome or high functioning autism Schopler, Eric, editor; Mesibov, Gary B., editor; Kunce, Linda J., editor
11. Children with Autism: A Parents' Guide Powers, M. D., ed.
12. Right from the start behavioral intervention for young children with autism A guide for parents and professionals Harris, Sandra L., Ph.D.; Weiss, Mary Jane, Ph.D.
13. Parenting without punishment Making problem behavior work for you Maag, John W., Ph.D.
14. PBS putting the positive into behavioral support An introductory training packet Ruef, Mike; Poston, Denise; Humphrey, Kristen
15. Children with cerebral palsy SECOND EDITION A parents' guide Geralis, Elaine, Ed.
16. Keys to parenting a child with cerebral palsy Leonard, Jane Faulkner; Cadenhead, Sherri L.; Myers, Margaret E.
17. Bullies are a pain in the brain Romain, Trevor
18. Kids explore the gifts of children with special needs Westridge Young Writers Workshop
19. Secret problem Wever, Chris
20. What happened to mommy? Fran, Renee
21. NATIVE AMERICAN LITERATURE Montana and Northcentral Regional Publications Susag, Dorothea
22. Date smart 1 Life Smart Curriculum Stanfield, James, Ed.D; Muccigrosso, Lynne
23. Date smart 2 Life Smart Curriculum Stanfield, James, Ed.D; Muccigrosso, Lynne
24. Beyond refuge coping with losses of vision and hearing in late life Luey, Helen Sloss; Belser, Dmitri; Glass, Laurel
25. Directory of agencies and organizations serving individuals who are deaf-blind REVISED EDITION Helen Keller National Center
26. Parents' role in advocacy on a legislative level Monograph 1991 Hausman, Barbara; Thomas, Laura J.
27. Transition services for youths who are deaf-blind A best practices guide for educators Everson, Jane M., Editor
28. Another season A coach's story of raising an exceptional son Stallings, Gene; Cook, Sally
29. Classrooms that work They can all read and write SECOND EDITION Cunningham, Patricia M.; Allington, Richard L.
30. Complete home learning source book The essential resource guide for homeschoolers, parents, and educators covering every subject from arithmetic to zoology Rupp, Rebecca
31. Documenting your disability to receive accommmodations Miller, Debra
32. How to reach and teach all students in the inclusive classroom Ready-to-use strategies, lessons and activities for teaching students with diverse learning needs Rief, Sandra F. Heimburge, Julie A.
33. Conduct disorders and severe antisocial behavior Frick, Paul J.
34. Coping with mental illness in the family: A family guide Rev Ed Hatfield, Agnes B.
35. Funny you don't look crazy Life with obsessive compulsive disorder Foster, Constance H.
36. How to live with a mentally ill person A handbook of day-to-day strategies Adamec, Christine
37. Panic attack, anxiety and phobia solutions handbook MacFarlane, Muriel K., RN, MA
38. Sky is falling Understanding and coping with phobias, panic, and obsessive compulsive disorders Dumont, Raeann
39. Your child and epilepsy Gumnit, Robert J., M.D.
40. Raising your child to be gifted Successful parents speak Campbell, James Reed
41. Kid friendly parenting with deaf and hard of hearing children A treasury of fun activities toward better behavior Medwid, Daria J. Weston, Denise Chapman
42. Signing family What every parent should know about sign communication Stewart, David A.; Luetke-Stahlman, Barbara
43. Bridging horizons An advisor's guide to FFA involvement for members with disabilities
44. Deciding what to teach and how to teach it: Connecting students through curriculum and instruction Castagnera, Elizabeth; Fisher, Douglas; Rodiefer, Karen; Sax, Caren
45. How your are is as important as what you do in making a positive difference for infants, toddlers and their families Pawl, Jeree H.; St John, Maria
46. Part C updates Third in a series
47. Programs for young children with disabilities under IDEA Excerpts from the Nineteenth Annual Report to Congress on the Implementation of The Individuals with Disabilities Education Act
48. LD child and the ADHD child Ways parents and professionals can help Stevens, Suzanne H.
49. Learning about learning disabilities SECOND EDITION Wong, Bernice Y. L.
50. Out of sync child Recognizing and coping with sensory integration dysfunction Kranowitz, Carol Stock, M.A.
51. When learning is tough Kids talk about their learning disabilities Roby, Cynthia
52. Police response to people with mental illnesses Including information on the Americans with Disability Act Requirements and Community Policing Approaches
53. Educational issues and strategies for children with fragile X syndrome
54. Fibromyalgia advocate Getting the support you need to cope with fibromyalgia and myofascial pain syndrome Starlanyl, Devin J., M.D.
55. Fragile X syndrome
56. Consumer's guide to psychiatric drugs Preston, John D., Psy.D.; O'Neal, John H., M.D.; Talaga, Mary C., R.Ph., M.A.
57. Look n cook A color coded picture cookbook using name brand products Sudol, Ellen M.
58. Look n cook PART A
59. Look n cook PART B
60. Look n cook lesson plans Sudol, Ellen M.
61. Encouraging potential in young children Weinhouse, Don, Ph.D.
62. Raising happy children A parent's guide Kashani, Javad H., M.D.; Mehregany, Donna V., M.D.; Allan, Wesley D., M.A.; Kelly, Kate
63. Secrets of discipline for parents and teachers 12 keys for raising responsible children Morrish, Ronald G.
64. Why doesn't anybody like me A guide to raising socially confident kids Marano, Hara Estroff
65. Choosing a wheelchair A guide for optimal independence Karp, Gary
66. Recipes for fun Play activities and games for young children with disabilities and their families
67. Special needs reading list An annotated guide to the best publications for parents and professionals Sweeney, Wilma K.
68. Stick up for yourself Every kid's guide to personal power and positive self-esteem Kaufman, Gershen, Ph.D.; Raphael, Lev, Ph.D.
69. Getting along with others Social Learning Curriculm Goldstein, Herbert
70. Recognizing and reacting to emotions Social Learning Curriculum Goldstein, Herbert
71. Meeting the needs of youth with disabilities: Handbook on supplemental security income work incentives and transition students
72. Working while disabled A guide to plans for achieving self-support while receiving supplemental security income
73. Assistive technology for rehabilitation therapists Angelo, Jennifer; Lane, Shelly, Editor
74. Adam and the magic marble A magical adventure Buehrens, Adam; Buehrens, Carol
75. Hi, I'm Adam A child's story of tourette syndrome Buehrens, Adam
76. A credo for support
77. Avoiding and IEP disaster Part 1 Tips for parents, teachers and advocates
78. Avoiding and IEP disaster Part 2 Administrative and legal perspectives
79. Avoiding and IEP disaster Part 3 Perspectives from parents and a blind student
80. Avoiding and IEP disaster Part 4 Perspectives from advocates
81. Avoiding and IEP disaster Part 5 The paraprofessional and teacher perspective
82. Avoiding and IEP disaster Part 6 Perspectives from a teacher of the blind and visually impaired and an orientation and mobility specialist
83. Goals for success Writing IEPS that work
84. It's all part of the job Social skills for success at work
85. Philosophy of self determination Charting the changing tides of managed care and long term services
86. Road you take is yours Disability Issues Series
87. Sensory challenges and answers Grandin, Dr. Temple
88. Shining bright Head Start inclusion Linderman, David P., Ph.D.; Adams, Tracy, M.A.
89. Touching tree A story of a child with OCD
90. Visual thinking of a person with autism Grandin, Dr. Temple
91. Guide to toys for children who are blind or visually handicapped
92. Macular degeneration Living positively with vision loss Wason, Betty; McMillan, James J., M.D.
93. Knowing the ropes Reaching new heights in rural community employment Griffin, Cary; Flaherty, Mike; Hammis, David; Shelley, Roger

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.

Carolyn Kindrich, Principal, Lolo Elementary School

"Mrs. Kindrich really seems to care about all the kids. She finds something good in every one of them."

"Mrs. Kindrich gives teachers the kinds of support they need to work with a whole variety of children. She does not expect things from teachers that she could not do herself."

Ralph Thayer, Principal, Arrowhead School, Billings

"Mr. Thayer works well with parents. When there is a problem, he does not place blame on the family or the child. Instead he works with the parents and child to help with behavior and makes things go better at school. He has done wonders for my son and I will always be grateful."

John Gorton, Special Education Teacher, Miles City

"Mr. Gorton works wonders with limited resources. He cares about his kids and it shows. He is always open to new ideas from parents, kids and others. Thankyou Mr Gorton!"

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.

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), plukmt@wtp.net (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 - Closed Captioned

Goals for Success: Writing IEPs That Work!: Length: 17 minutes

Angels for $10

The "Angel of Promise" and "Angel of Hope" series ceramic Angels are now available for only $10!!! Get them while they last!

If you would like to purchase an angel for a special teacher, teaching assistant, administrator, psychologist, respite worker, therapist, physician, friend, or yourself, fill out the form below, contact the PLUK office in Billings by phone, fax, e-mail, letter or drop by in person. The cost is $10 plus $3 shipping for each angel.

PLUK Angels

516 N 32nd St

Billings MT 59101-6003

Phone: 406/255-0540; 800-222-7585

My name is:

My address is:

CitySTzip:

My "Angel" is:

My "Angel's" address is:

CitySTzip:

__Send to my address__Send to "Angel's" address

__Please recognize my "Angel" in the newsletter

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 1-800-222-7585.

• 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 ha