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PLUK News August/September 1998 Volume 13 Number 1/2
	PLUK News is published by Parents, Let's Unite for Kids, a private nonprofit organization founded in 1984 by a group of parents of children with disabilities and chronic health problems. Subscriptions are free to parents in Montana and $15/year for other interested individuals. PLUK News is available in alternative formats. Editor: Katharin A. Kelker PLUK Office 516 N 32nd St Billings MT 59101 1-800-222-7585 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

Barn Raising is Great Success IDEA Regulations Delayed Work Incentive Improvement Act More Agent Orange Benefits Crime Act Addresses DD Victims Autism Research Proposed Court Decision on Nursing Services Important Decision for LD Athletes Ask the Candidates Medical vs. Educational Dilemmas Health Risks for Adolescents Who Pays for Related Services? Student Search and Seizure Marriott and Employment New Harris Poll Americans Pay More for Meds ASK PLUK???

Parent Corner Special Olympics On-line Mark Your Calendars Parent-to-Parent E-Mail Matches New Test for Early Detection of DS Parent Reports on Training Parent Training Grants Living Without Limits Radio Show Transition Video: It's for You! Cochlear Implants in Young Children Emotional Bank Account Every Minute Counts Alternatives to Spanking Folic Acid: Neural Tube Disorders Fibromyalgia Syndrome PLUK cyberNews HONOR ROLL

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Barn Raising Is Great Success, Thanks to All PLUK's Friends!!!

We want to say a heartfelt "thank you" to our friends throughout the state for the success of our Barnraising event held on Sunday, August 23, 1998, at the Shiloh Barn in Billings. We asked our friends to help us raise money to pay for a move from our present location at MSU-Billings to a new home in downtown Billings at 516 N 32nd St and the response was overwhelming. Thanks to the generosity of friends, we raised over $4,500!

PLUK's main office has been located at MSU-Billings since 1984. The university is remodeling the building so we had to move out. As a nonprofit, we needed financial assistance to pay for moving expenses, and our friends responded to our call for help in an extraordinary fashion. We are grateful to the following individuals and merchants who donated food and auction items for the Barnraising:

Butte--

• Butte Floral
• Video Library
• Bei Capelli
• Universal Athletic
• Steeles Furniture
• Thomas' Apparel
• Osco
• Herberger's
• Mary Kay
• Great Divide Realty
• Fran Johnson Sports
• Butte Produce
• The Sports Connection
• Montana Magic
• Blockbuster Video
• Bernie's Hallmark
• Grand Ave Beauty Boutique
• Anne Galasso
• Safeway/Albertson's
• Whiteheads
• John's Pork Chops
• Building Self Worth (BSW)

Billings--

• Bob & Nancy Staigmiller
• Janice Sand
• Janet Jansen
• Wendy's
• Pepsi-Cola
• Shirley & Ralph Bowman
• Radisson Northern Hotel
• Costco
• Sysco Food Services
• Buttrey Big Fresh
• Big Bear
• Paul & Kathy Kelker
• County Market
• Gainan's
• Albertson's
• Target
• Pet Pantry
• Wal-Mart
• Sheraton Hotel
• Ben Franklin
• Meadow Gold Dairy
• Herberger's
• Sweetheart Bread
• Office Max
• Martha Weber
• Andre LaRose
• Michael Brennan, M.D.
• Welch Heart Center

Over 200 people joined us at a great family event, including cooperative games for kids, line dancing lessons, entertainment and a picnic supper. Following dinner there was a drawing for three grand prizes. The winners were:

• Handmade quilt--Susan Ogden (Billings)
• Montana-made bed--Jan Spiegle-Stinger (Helena)
• Montana photograph--Michael Kenney (Billings).

The proceeds from the Barnraising will be used to purchase a telephone system, renovate the new office, and install our library and computer lab in an accessible and convenient space.

Those of us at PLUK are so grateful to all of you for pitching in and helping to make the Barn Raising such a success. It is great to know that we have so many friends who were willing to come to our aid.

PLUK Move Completed by September 15th

Parents, Let's Unite for Kids was fortunate to be able to find an affordable, accessible facility in downtown Billings at 516 N 32nd Street near the YMCA. PLUK's new location is a store front on one of Billings' busiest downtown streets. The library is in the front facing 32nd street and the assistive technology lab is toward the back facing the alley where there is an accessible entrance. Staff desks are between the library and lab. There is free parking for customers right next to the building and handicapped parking spaces in front. When you are in Billings, come see us in our new facility. We love to show it off!!

PLUK's new address and telephone numbers are:

Parents, Let's Unite for Kids

516 North 32nd Street

Billings MT 59101

406/255-0540 (voice/TT)

406/255-0523 (fax)

800-222-7585 (toll free in MT)

plukmt@wtp.net

http://www.pluk.org

IDEA Regulations Delayed: Does It Matter?

The Individuals with Disabilities Education Act (IDEA) was revised by the 105th Congress and signed into law by President Clinton in June of 1997. Regulations for the implementation of the changes in the law were supposed to be ready in the spring of 1998. However the regulations proposed by the U.S. Department of Education generated so much criticism from some members of congress and national education groups that the regulations are currently on hold--perhaps until the national elections are over in November.

Assistant Education Secretary Judith Heumann wrote to Chief State School Officers in July saying: "My goal has been and continues to be to move as quickly as possible to publish final regulations, but to act responsibly and take very seriously each comment that we received."

Heumann has postponed parent training institutes which had originally been scheduled for July and August. "Since these workshops focus on the regulation changes it would be premature for us to move forward," Heumann has commented.

More than 6,000 public comments on the draft rules and further comments at congressional oversight hearings have raised serious concerns, especially regarding disciplinary proceedings.

Unfortunately during this period of time when the regulations are still not available, some lawyers for school districts have been spreading "panic" among teachers and principals in training sessions that exaggerate what the law requires. This unnecessary confusion has resulted in several congressional proposals to amend the law.

Advocates for disability groups have urged Heumann to take action soon. But some spokespersons for groups associated with special education say the fuss about the delay is overdone. For example, Justine Maloney of the Learning Disability Association of American says that only 10% of the regulations are new. The rest of the regulations are the same as what has been in place since 1975 when the original federal special education law was passed.

Even though the regulations have not been adopted formally, the law itself must be implemented now. Judy Heumann has said: "States are bound by the statute and existing regulations that are not inconsistent with IDEA '97. States should conduct monitoring of school districts based on the statute...pending publication of the final regulations."

Work Incentive Improvement Act Proposed

One of the major problems for people with disabilities who want to go to work is that once they are working and earning a self-supporting wage, they may no longer be eligible for Medicaid or Medicare. Many people with disabilities decide to work part time or not at all because the medical benefits that come with SSI are more significant to them than any financial or personal benefits they may receive from working.

Sen. Kennedy and Sen. Jeffords have proposed S. 1858, the Work Incentive Improvement Act. Under this act, individuals with disabilities would have the opportunity to buy into Medicare and Medicaid after they have gone to work. In other words, as individuals begin to earn enough money to be self-supporting, they can give up SSI benefits without the fear that they will be totally without health coverage.

More Agent Orange Benefits

On September 26, 1996, President Clinton signed into law the Agent Orange Benefits Act of 1996. The law became effective on a year ago on October 1, 1997.

This law established within the Department of Veterans Affairs the legal authority to provide a monetary allowance ($200, $700, $1,200), life-time medical benefits and vocational training/rehabilitation services to the children of Vietnam veterans who have a child born with spina bifida. The rationale for the legislation was to provide for the special needs of children of Vietnam veterans who were born with spina bifida, possibly as a result of exposure to Agent Orange in the Republic of Vietnam during the Vietnam War.

The Department of Veterans Affairs estimates there are approximately 3,000 families affected by the legislation. To date, approximately 800 families have been located through extensive outreach efforts of SBAA and national veterans' organizations.

If you are a Vietnam Veteran who has a child with spina bifida, contact Spina Bifida Association of America (SBAA) at 800-394-5387 or 202-944-3285 or check SBAA web site at <<http://www.sbaa.org>>.

Crime Act Addresses DD Victims

The Crime Victims with Disabilities Awareness Act, unanimously approved by the Senate, directs Justice Department resources to research reportedly high incidence of crime against individuals with developmental disabilities.

Senate sponsors Leahy (D-VT) and DeWine (R-OH) expect the measure (S 1976) to increase awareness and develop strategies for addressing the safety and justice needs of crime victims with developmental disabilities.

Research in Australia, Canada, and Great Britain indicates crime victims with developmental disabilities suffer repeated victimization because few crimes against them are reported.

There is reluctance by police, prosecutors and judges to rely on the testimony of persons with developmental disabilities, making them a target for criminal predators.

Individuals with disabilities are four to 10 times more likely to be victimized than individuals without disabilities, report other studies. One Canadian study finds 67% of women with disabilities were physically or sexually assaulted as children.

Because similar research has not been compiled in the U.S., sponsors expect the act to create a knowledge base to identify programs, policies or laws that hold promise for making the justice system more responsive and effective.

The bill has received broad support, evidenced by a letter signed by more than 50 groups including the National Association of Developmental Disabilities Councils, the National Alliance for the Mentally Ill and the National Association of State Directors of Special Education. For more information, contact DeWine at 202-224-2315 or Leahy at 202-224-4242.

Autism Research Proposed

Rep. Greenwood (R-PA) has proposed $40 million in research funding to combat pediatric autism.

The Advancement in Pediatric Autism Research Act (HR 4203) aims to assist the 400,000 individuals who face pediatric autism or autism spectrum disorder. Greenwood's bill has bipartisan support. For more information, contact Greenwood at 202-225-4276.

Court Decision on Nursing Services

In special education, there has always been concern about where the line is to be drawn between services that are educational or related to education and services that are essentially medical.

In a recent 7th Circuit decision, the issue of medical vs. educational services was raised again and the Court determined that a school district had presented no evidence of an undue burden in providing a medically fragile student with a full-time medical aide.

The court in Morton Community Unit School District No. 709 v. J.M., 28 IDELR 614, refused to enter the debate over the difference between related services and medical services. It said it anticipates a U.S. Supreme Court decision on the issue in a related case, Cedar Rapids Community School District v. Garret F., 25 IDELR 439 (8th Cir. 1997).

In Morton, a 14-year-old medically fragile student with a tracheostomy required a nurse or other full-time trained individual to monitor his life support equipment, suction his airway, and apply his hourly eye medication during school. The parents claimed the district was required to pick up the cost, which would be about $20,000 a year, for the student's four-hour-a-day, four-day-a-week program. The school district refused, saying the services are medical services it is not obligated to provide under IDEA.

In due process, a hearing officer and a review officer determined the district was required to provide the requested service since it was a related service the student required to order to benefit from his education. A federal district court agreed, saying that the disputed service was not a medical service as defined by IDEA.

In upholding the district court decision, the Circuit Court rejected the parents' assertion that the district was required to provide any related service necessary for a student with a disability to attend school. It pointed out that the U.S. Department of Education's position is that "supportive services may be required if they are necessary to aid a child with a disability to benefit from special education" and that "each situation must examined on a case-by-case basis."

The court also rejected the district's contention that only services traditionally provided by the school nurse are not medical services. The court noted that an undue burden defense might apply to prevent a school district from furnishing related services that were unreasonable, but the district failed to demonstrate that. Thus, the court concluded that monitoring, suctioning, and administering eye medications did not constitute an undue burden. These services could be provided to the student using nursing assistants or licensed practical nurses trained directly by the child's doctor with input from the parents, who also were trained and experienced in providing the services.

An Important Legal Decision For LD Athletes

The National Collegiate Athletic Association (NCAA) has agreed to revise policies that have prevented hundreds of students with learning disabilities from playing college sports and getting scholarships, under a landmark agreement reached with the Justice Department.

The agreement, filed in U.S. District Court in Washington DC, stems from a series of complaints lodged with the Justice Department by student athletes over the past 2 1/2 years. The complaints alleged that the NCAA's initial eligibility requirements violate the Americans with Disabilities Act (ADA) by discriminating against student athletes with learning disabilities.

After receiving a complaint in 1995, the Justice Department launched a 30-month investigation into the way the NCAA grants eligibility.

The NCAA requires a showing that student can succeed academically in college while playing sports. It determines whether a student has met this standard based on a series of eligibility requirements involving courses taken, grade point average, and standardized test scores. Students who do not meet the NCAA requirements cannot receive athletics-related financial aid or participate in sports.

Last October, at the completion of its investigation, the Justice Department issued a letter of findings calling the NCAA's eligibility requirements too rigid. It found that the NCAA often refused to give students with learning disabilities credit for classes in which the materials or methods of instruction were modified to accommodate the students' disabilities. The Justice Department noted that many classes were rejected even though the classes provided the same knowledge and skills as other courses that were credited.

The NCAA also allegedly rejected classes if they were taught within a school's special education department or if the title of the class suggested the classes were remedial, no matter what the content of the course was.

Although the NCAA had a waiver policy, which granted certain student's exceptions to academic requirements, the Justice Department found that the waiver process placed students with learning disabilities at a significant disadvantage relative to their peers.

Under the settlement, the NCAA will now have to:

• Certify classes designed for students with learning disabilities, if the classes provide students with the same types of skills and knowledge as those offered other college-bound students;
• Enable students with learning disabilities who do not meet the initial eligibility rules when they graduate from high school to earn a fourth year of athletic eligibility if they complete a substantial percentage of their degree work and maintain good grades;
• Direct the NCAA committees that evaluate applications filed by students who do not meet the requirements but are seeking the high school preparation and waiver, to review the student's performance when deciding whether to grant a waiver;
• Include experts on learning disabilities on the committees that evaluate a student's application for waiver;
• Designate one or more employees as an ADA Compliance Coordinator, to serve as a resource to NCAA staff and as a liaison with students with learning disabilities;
• Train its staff on the new policies and publicize the terms of the agreement to high schools, students, parents, and member colleges and universities; and,
• Pay a total of $35,0000 in damages to four student-athletes.

This is the Justice Department's first court agreement filed under the ADA regarding people with learning disabilities.

For further information, call the Justice Department's toll-free ADA Information Line at 1-800-514-0301. The Justice Department also has established an ADA home page on the World Wide Web at <<http://www.usdoj.gov/crt/ada/adahom1.htm>>.

Ask the Candidates

The Fall is prime time for influencing people who are running for the Montana Legislature. If you are concerned about the quality of your children's public school education or about funding for special education, the Legislature is the decision-making body that you need to influence. Here are some questions you can ask candidates at public forums or when they come calling at your door:

• Discussions at the state and national level for improving public education include proposals that offer tax support for private education. This support may be in the form of vouchers, tuition tax credits, state scholarships and education IRAs which could allow parents to choose the school their children attend. How do you view these options? Do you support vouchers? Charter Schools?
• What ideas do you have for improving the quality of public education?
• What ideas do you have for educating the full range of students from the college-bound students to those who are interested in agricultural or technical careers or service jobs? How can public education serve the wide range of abilities and interests of students?
• How would you approach establishing a viable, predictable funding source for Montana's public schools?
• What options do you propose for school districts with "capped" budgets? How would you respond to the local taxpayers who wish to see additional state financial support for their public school district?
• What are your priorities for public education in Montana?

Standards for Deciding Medical vs. Educational Dilemmas

In recent cases concerning school district's obligations to provide medically-related services, the courts have been applying two types of standards: (1) the simple "bright-line" test (from the Tatro case) which says that school districts are not responsible for services that must be provided only by a physician; and (2) a more narrow standard that takes into account other factors, such as level of expertise necessary to administer services, whether the student's condition is life-threatening, and the physical and financial burdens of providing services. The U.S. Supreme Court has agreed to review the Garret F. case. In this case, the 8th Circuit has already ruled that all services that can be provided in school by a nurse or qualified layperson must be provided. If the Supreme Court upholds the 8th Circuit decision, then the responsibility for providing medically-related services to special education students would be governed by the broad interpretation of the bright-line test.

Health Risks for Adolescents

The Commonwealth Fund has supported a survey of health risks for 6,700 boys and girls in grades five through twelve. The first report from the study indicated that among children who had themselves suffered physical and sexual abuse, there was a much higher incidence of health-risk behavior for both boys and girls.

In a second report on this survey, analysis shows that by the time girls and boys get to high school, there is little difference in the numbers who take risks with their health by smoking (15% of boys, 14% of girls), drinking (20% of boys, 15% of girls), and using drugs (20% of boys, 18% of girls). Their reasons are similar, too; both genders take these risks to relieve stress, because they are around others who do it, because it is fun, and because they wanted to try it.

Some differences did emerge. Among the frequent drinkers, boys were twice as likely as girls to say they do not think they will live long enough to worry about the risk. Also, boys are more likely than girls to say they have no one to turn to for support when they feel stressed, overwhelmed, or depressed. If they talk about these things at all, boys are most likely to turn to their mothers and less likely than girls to unburden themselves to friends.

When it comes to sexual risk taking, the boys in the survey would like their doctors to discuss sex, but say that rarely happens. They learn most of what they know about sex in school or from their friends, believe that abstaining from sex is important (70% of younger boys and 49% of older boys), and get their contraceptive devices at the drug store--not from school health clinics. To get a copy of the report, call the Commonwealth Fund at 212-535-0400.

Who Pays for Related Services at School?

Special education and related services are supposed to be provided for free to an eligible child. In other words, under the special education law parents cannot be charged for the additional costs incurred by districts.

As school districts struggle to pay for such related services as psychotherapy, speech, occupational, and physical therapy, they seek to tap into other sources of funding such as Medicaid or the parents' private health insurance. Parents need to know that they do not have to use their private health insurance to pay for services that are part of their child's IEP. If parents want to use their insurance in this way, they certainly do can so, but their agreement should be put in writing at the time that the IEP itself is written. School districts cannot require parents to agree to use their health insurance as a condition of their child receiving special education.

The use of Medicaid to pay for school services is a somewhat different case. In response to various inquiries regarding how school districts can access medical assistance funds for reimbursement of related services furnished to students with disabilities, the Family Policy Compliance Office has said neither the Individuals with Disabilities Education Act (IDEA) nor the Family Educational Rights and Privacy Act (FERPA) allow the disclosure of personally identifiable information from student education records to a state Medicaid agency, in the absence of parental consent.

FERPA bars the disclosure of educational records without parental consent unless one of several exceptions apply. Since none of the FERPA exceptions apply to disclosures to state Medicaid agencies, districts must get parental consent before making disclosures to a state Medicaid agency. FPCO stated that schools may not provide a list of all students who are disabled or are receiving services under the IDEA for the purpose of finding out who among them are covered under Medicaid, in the absence of parental consent.

In reaching this conclusion, FPCO rejected the notion that such a list could be disclosed without consent under the exception covering the release of directory information, finding this exception does not permit the disclosure of student names when they are linked with information that can never be designated as directory information such as special education status. A school district may choose to consider itself a health-care provider, it may call its students patients, but the records related to the services maintained by the school are still considered education records.

Turning to situations where consent may not be required, FPCO noted that parents may give written consent to either the district or the Medicaid agency for use of their child's Medicaid to pay for school services. The forms that parents fill out when they apply for Medicaid could include a place for them to consent to the use of Medicaid for school services. If the state has such an application for Medicaid that includes the parents' consent, the school district does not have to obtain a copy of the application to keep in its files, assuming it feels reasonably assured that such a consent exists and complies with the regulations.

If a district contracts with a billing agency to confirm Medicaid eligibility and submit claims, no parental consent to disclose is required for the disclosure of educational records by the district to the agency. Nothing in FERPA prevents a district or a private agency under contract with the district, from obtaining a list of Medicaid-eligible students from the state Medicaid agency and comparing the list to the list of students receiving services from the district. Such a review can be accomplished by computer matching, in which a district accesses a database to extract and match Medicaid eligibility information with information from student education records.

If a school district is careful in how it obtains information about Medicaid eligibility, there is no legal barrier to the district using Medicaid, either with or without the parents' consent, to pay for services delivered as part of a student's special education program. However, in the case of private health insurance, such insurance cannot be used by school districts to pay for related services unless the parents have agreed in writing.

Student Search and Seizure

Parents are sometimes surprised by the broad powers that school officials have to search students and their belongings. The Fourth Amendment to the U.S. Constitution protects Americans from unreasonable searches, but the interpretation of this amendment has caused substantial legal debate, much of which has been focused on whether a search is considered "reasonable" without individualized suspicion.

"Suspicionless" searches are more threatening to an individual's privacy; therefore, courts have historically required a showing of individualized suspicion and until recently have refused to recognize any exceptions to such a requirement.

Over the last several decades, however, the U.S. Supreme Court has significantly narrowed the scope of protection offered by the Fourth Amendment, holding that individualized suspicion is not always required in every noncriminal search. In these more recent cases, the courts have determined a search's reasonableness by implementing a balancing test, weighing the nature of the individual's privacy interest against the promotion of legitimate government interests.

The balancing test has had an effect on students in school in the following areas:

Drug-Testing. The Supreme Court has upheld the right of school officials to test public school student-athletes for drugs on a random and suspicionless basis. In making this decision, the Court ruled that the nature and immediacy of the school district's interest in protecting students from illicit drugs outweighed the individual student's right to privacy.

Individualized Suspicion. Individualized suspicion (reasonable cause to search) is a standard for a search on school property or at school-related events based on the school official's specific reasonable inference from the facts, in light of the school official's experience. Specific reasonable inference may be drawn, for example, from a tip from a student, suspicious behavior which suggests that contraband is present, a smell indicating the presence of contraband or a bulge in a pocket or purse.

General Searches. General searches for contraband (e.g., weapons or drugs) may be justified when they are minimally intrusive. Courts generally take the view that students within the school environment have a lesser expectation of privacy than members of the general public, and that school officials can make searches for weapons or drugs because of their general duty to protect all of the students. However, these general search powers do not apply to searches made for less compelling reasons like looking for lost or stolen items.

Metal Detector Searches. The use of metal detectors or magnetometers has become common place in airports and public buildings, including schools. Metal detector searches are justified as necessary to maintain a weapon-free atmosphere conducive to education.

Locker Searches. Court rulings suggest that students should have no expectation of privacy in school lockers when the school district both owns and controls the lockers and has a written policy describing this ownership.

However, searches of purses, jackets or other items of clothing owned by the student are considered private searches and are subject to the standard of individualized, reasonable suspicion.

Sniffing Dog Searches. The use of drug sniffing dogs to conduct general searches of the outside of student lockers and cars have been upheld by the courts on the theory that a person does not have a reasonable expectation of privacy in the air surrounding a public place.

Sniffing of a person by a drug detecting dog may constitute a search and individualized suspicion would be necessary for such a search to be legal. On the other hand, teachers and other school officials may use their sense of smell to detect the presence of contraband. In this case, school children do not have a reasonable expectation of privacy.

Use of Cameras. Cameras may be used in public areas such as school buses, hallways, or classrooms. Use of cameras in a bathroom or locker room, however, where students may reasonably expect privacy is less likely to be considered legal.

Search of Motor Vehicles. School officials may search vehicles if they have reason to suspect that the vehicle contains contraband.

Searches in Non-School Settings. At school-sponsored events or on school-related field trips, school officials act in the place of parents and may search students as part of their duties to protect students in their care. These searches might include a search of a motel room or the student's person.

Summary

In general the courts, including those in Montana, have been willing to affirm the authority of local school trustees to discipline students who are in possession of contraband (e.g., drugs, weapons) and to allow school authorities a moderate degree of flexibility in conducting searches.

Marriott Opens up Possibilities for Employment

Students with disabilities may be able to get jobs from large businesses through innovative programs like the one operated by Marriott International.

Marriott's Brides from School-to-Work Program places students with local employers where they work as interns while they complete their secondary education.

Currently, the program operates in Atlanta, Chicago, Washington DC, Fairfax County (Virginia), Los Angeles, Montgomery County (Maryland), and San Francisco.

The program has no deadline and runs in six-month cycles, coinciding with the school year.

Schools that work in partnership with Marriott report a high level of success in getting students employed after high school. Adrienne Chivers of the Minneapolis-based Transition Plus Services is one Marriott partner who praises the Bridges program. She works in a publicly funded school for students with disabilities.

For 20 years, Chivers' school has collaborated with Marriott to employ students with physical and developmental disabilities at the company's hotels.

According to Chivers, an important component of the relationship is job coaching. Transition Plus coaches give students job training, offer advice on how to dress professionally and assist them in following directions. A crucial aspect of creating partnerships with the corporate world is convincing potential employers that students are capable of doing the work.

Many of the students work part-time on the days they do not have classes; others are hired full-time after graduation. All are paid at least minimum wage.

Mary Hargens, general manager of the Mendota Heights (MN) Courtyards by Marriott Hotel, says the company usually hires about 12% of the students full-time.

Marriott has been in the business of community partnerships since the late 1970s and is also known for its Maryland-based Foundation for People with disabilities Which also supports programs to aid people with disabilities obtain employment while completing high school. For more information about the Marriott programs, call 301-380-7771.

New Harris Poll

According to a 1998 survey the National Organization on Disability in cooperation with Louis Harris & Associates, Americans with disabilities still face gaps in securing jobs, education, and accessible public transportation, as well as difficulties in many other areas of daily life, including recreation and worship. Among the most startling findings was the significant gap in the employment rates of working people with disabilities versus working people without disabilities. Only 29 percent of working age (18-64) people with disabilities work full or part-time, compared with 79 percent of the population without disabilities. This represents a spread of 50 percent. Of those working-age people with disabilities who are not working, 72 percent say that they want to work. Another finding indicates that only 54 percent of adults with disabilities have heard of the Americans with Disabilities Act (ADA). For more information on the survey, contact NOD at 910 16th St. NW, Washington DC 20006.

Americans Pay More for Psychotropic Medications

People with mental illness may be paying as much as six times what Europeans pay for some psychotropic medications, a study by the consumer group Public Citizen reveals.

The result is that many, especially the poor, are excluded from treatments that could help them live and function more normally.

The study compares the cost of three newer antipsychotics and five newer antidepressants in 17 countries in North America and Europe.

For all of the drugs, the cost is considerably more in the U.S. In fact, prices in the he U.S. were on average 1.7 to 2.9 times higher than in other countries.

For example, a 30-day supply of Prozac costs $72.16 in the U.S.--almost three times higher than what it would be in Spain, $25.93. The drug clozapine (which is sold under the brand names Clozaril and Novartis), at $317.03 in the U.S., is six times higher than its price in Spain, $51.94.

Dr. E. Fuller Torrey, a research psychiatrist and leading expert on psychotropic medications, says that "American patients are being ripped off by profiteering drug companies, and those who can't afford the colossal prices are often left untreated, with disastrous consequences.

For a full copy of the study, go to Public Citizen's Website at <<http://www.citizen.org/hrg/WHAT'SNEW/1446.htm>>.

ASK PLUK???

The following questions are recent inquiries received by PLUK staff.

Q: At our son's last IEP meeting, the team discussed his problems with making friends and decided to write social skills training into the plan for this year. I think this training is probably a good idea, but I am still not certain what it means. What are social skills? What will they be teaching my son?

A: Social behavior is a complex set of skills, involving language, speech, body language, cognitive abilities, and much more. Children who are socially competent have an awareness of their own feelings and empathy for the feelings of others. They can cope with adversity and generate friendly feelings that make other children feel good. When children say they like someone because he or she is "nice," they are describing a child who knows how to form good relationships by using the following skills:

Adaptation: The ability to "read" what is going on in a social scene and fit in.

Responsiveness: Picking up on and reinforcing another child's agenda, so that he or she feels welcomed and wanted.

Timing and staging: Knowing what kind of behavior is acceptable in a new relationship and what should wait until a solid friendship is established.

Indirect approach: Knowing how to initiate a friendship lightly and indirectly ("Let's ride our bikes to the mall on Saturday") rather than head-on ("Let's be best friends").

Feedback receptivity: Picking up on cues to how the interaction is going and moderating behavior accordingly.

Awareness of one's image: Knowing how to adopt the styles, slang, hobbies of the "in" group and avoid those that mark the social outcast.

Requesting skills: The ability to ask for something or express an opinion in a suitable way.

Assertiveness skills: The ability to assert influence over the ideas and behavior of peers and to stand up for oneself.

Recuperative strategies: Being able to compensate for social errors.

Verbal pragmatics: Understanding the social context of language, the intentions or perspective others express by their choice of words, tone of voice, and body language, and using language in ways that make one's own intentions understood.

Jargon fluency: Using the parlance of peers in a natural and credible manner. Knowing how and when to "switch codes" for different audiences.

Social prediction: Picking up the "hidden agenda" in an interaction and foreseeing how one's actions or words will affect others.

Social memory: Recalling and making use of what has been learned in earlier social interactions to repeat a success or avoid a failure.

As you can see from this list, social behavior is complicated, and there are many skills to be developed. If your son has not been able to develop these skills through experience, he will benefit from some direct instruction in areas where he is weak. As a parent, you can probably tell from reading the list of skills which ones would be appropriate as objectives for your son's program. If you have no specific information on which skills are going to be addressed through your son's IEP, ask his teacher for a conference to discuss this area in depth.

You may also want to work on these social skills at home. Generally speaking, the following five-step process is effective:

Coaching. Pick a social situation your son finds difficult and talk about the social errors (weak greeting skills or lack of empathy, for example) that make it go wrong. Work out an initial strategy for handling it better and an alternative in case the first strategy does not work. Role-play how it will go.

Previewing. Ask your son to imagine what is likely to happen before he actually tries the strategy.

Reviewing and revising. Go over the plan again. Tell him to consider alternatives and choose the course of action that he thinks is best.

Acting. Carry out the plan. Tell the child to monitor how it is going and think about how to recuperate if things go wrong.

Evaluating. Go over the interaction afterward, asking your son what went right or wrong. Help him plan to reuse successful strategies and modify or discard unsuccessful ones.

Sometimes children resent their parents teaching social skills. Your attempts to help your son with social situations may be interpreted by him as "nagging." If this is the case, you may want to ask someone else in the family to be his social "tutor."

Q: If my child is entitled to a service, does that mean my school district has to supply it? I get confused because school personnel say they don't have unlimited funding for special services.

A: It is certainly true that public school districts do not have unlimited funds for educational services they may provide. However, both federal and state law require that services for an eligible special education student must be provided if need for those services has been established. This does not mean that the school district must supply the best possible or most expensive services. Instead what the law requires is that the school district provide those services which are necessary for the student to make reasonable progress from year to year.

If at an IEP meeting, school staff bring up the subject of cost, it is appropriate to say something like this: "I realize that the services we are discussing will have to be paid for by the school district, but this team does not have the power to determine how the district will spend its budget. The IEP Team must focus on the student's needs and how those needs can be met." In other words, the IEP Team is intended to write an educational plan of goals and objectives and services that are uniquely designed to meet the individual student's needs. The funding of these services is a matter for the School Trustees and the school administration in another forum.

Q: Do children in special education have to be labeled?

A: Most parents do not like the idea of their child being labeled with some disability diagnosis. Parents prefer that their child be viewed as a unique person with individual characteristics rather as a "label". It used to be that the special education law absolutely required that children in special education be labeled by disability category. Since the reauthorizing of IDEA, it provides school districts with discretion in their obligation to classify students with special needs. For example, 10 USC Section 1412 (a)(3)(B) states: "Nothing in this Act requires that children be classified by their disability so long as each child who has a disability listed in Section 1401 and who, by reason of that disability, needs special education and related services is regarded as a child with a disability under this part."

This indicates that a district no longer must specifically classify each student with a disability within certain designated categories.

Thus, if parents request that a district refrain from specifically classifying their child as "autistic" or "emotionally disturbed," the district may lawfully agree to this request under the reauthorized IDEA.

If the school district has a policy of not classifying students by disabilities, the district will still have to report to the state by category their students' disabilities. The new regulations for IDEA '97 may also further clarify the labeling process, but those regulations are not yet available.

For the moment, it can be said that IDEA '97 seems to be moving away from a need to "label" students in order to get services. However, it may be too soon to abandon labels entirely until the regulations for IDEA are finalized.

Q: Do people diagnosed with Asperger Syndrome typically have high IQs?

A: Asperger's Syndrome is a neurological disorder characterized by a lack of pragmatic language and underdeveloped social and interpersonal skills. Individuals who receive this diagnosis often have extensive vocabularies and may speak very intelligently on certain subjects, but they tend to think in rigid patterns and have difficulty with discerning and nuances of meaning.

Asperger's is not a syndrome characterized by mental retardation or low intelligence. However, the syndrome does not necessarily imply high intelligence. Typically, individuals with Asperger's may have some areas of high ability (e.g., computer skills), and other areas of weakness (e.g., creative writing). Because of their extensive vocabularies, individuals with Asperger's sometimes appear to be more intelligent than they are, overall.

Q: We recently had an independent educational evaluation (IEE) done for our son whom we suspected of having clinical depression. The school district paid for the evaluation so the psychiatrist sent the results of the IEE directly to the district. We had not given permission for disclosure of this information to the district. Did the doctor act legally by sharing the results without our consent?

A: The doctor did act legally. The results of an IEE must be disclosed to the school district because these results are to be considered when the IEP Team meets to develop an Individualized Education Program. Since the school district must consider the results of the IEE when writing the student's plan, the district must have access to the results.

Parent Corner

Items of interest to parents

Good News

Maggie Bullock has been selected as the new Program Director for Developmental Disabilities. Maggie has a long history of working in the disability field. She was previously the Administrator of the Montana Vocational Rehabilitation Program and has experience working in the Developmental Disabilities system in Arizona.

The Program Director position had been eliminated when the Racicot Administration reorganized the Social and Rehabilitative Services and created a mega-agency called the Department of Public Health and Human Services. Prior to the elimination of the position, Mike Hanshew was the Program Director for Developmental Disabilities.

Under the reorganized system, Joe Mathews, the Administrator of the Disability Services Division had assumed responsibility for DD services as well Vocational Rehabilitation and other disability services. Joe found these combined duties to be too much and sought the reinstatement of specific administrator of DD services.

This is good news for people with developmental disabilities and their families. Maggie is a knowledgeable and accessible person, and it is great to have her back in Montana.

Store for the Deaf

Tom Willard, publisher of Newswaves, a national newspaper for the deaf community, has opened a one-of-a-kind store in Rochester New York, for people who are deaf and hard of hearing.

This store, called Sound Effects, will stock a wide variety of products for hearing impaired people and those interested in sign language and deaf culture. Customers can find several models of TTYs, text telephones, doorbell flashers, baby cry lights, telephone signalers, flashing smoke detectors, and wake-up alarms.

Sound Effects also offers books and videos related to sign language and the deaf community, along with posters, notecards, t-shirts, caps and other novelty items.

The store is managed by Willard Publications, a deaf-owned company formed in 1996. For more information, call: 716/473-5240 (TTY); 800-421-1220 (relay); 716/473-6328 (fax); or <<newswaves@aol.com>>.

Special Olympics Dates

The State Special Olympics Basketball Tournament will be in Great Falls on November 4-6, the Winter Games will be at Big Mountain near Whitefish on March 22-24, 1999, and the World Summer Games will be June 26-July 4, 1999 in Raleigh/Durham. For more information about Montana Special Olympics activities, call 1-800-242-MTSO.

Job Corps

Job Corps is particularly looking for female students to enter its educational programs. Job Corps provides a variety of vocational options and training programs. It is a US Department of Labor program providing free vocational, education, and social skills training for qualified youth (male and female) aged 16-24 at several Job Corps campuses. For more information, call the Admissions Office at 406/259-2322 or 1-800-544-5627.

Travelers' Rights

The American Society of Travel Agents (ASTA) has unveiled its "Air Travelers Bill of Rights," which includes timely and courteous assistance for individuals with disabilities as one of its nine main points. ASTA's Web site will solicit consumer comments and have a monthly progress report on how carriers are doing at accommodating people with disabilities and their traveling needs. To contact ASTA, call 703-739-2782; 703-ASTA-FAX (fax); or visit them on the Web at <<http://www.astanet.com/travelersrights>>.

New DS Video

The National Down Syndrome Society has produced a new video called A Promising Future Together: A guide for New Parents of Children with Down Syndrome. The video is intended to educate parents about their new or expected baby with Down syndrome in an accurate, non-threatening way using experiences of parents at different stages in their children's lives, developmental pediatricians and other professional. The video informs parents about early intervention, local and national resources and health care screenings that can help their children achieve their full potential.

For more information about the video, contact NDSS at 1-800-221-4602.

Service Denial

The American Medical Association Patient Advocacy Team is gathering information about how current health system practices are affecting people with disabilities or chronic illnesses. If you have experienced denial of care, burdensome pre-authorization requirements, failure to refer patients to specialist care, or other discriminatory practices by a healthcare plan, contact:

AMA/PAT

515 North State Street

Chicago IL 60610

312-464-4835; 312-464-5846 (fax).

Anxiety Disorders Resource

The Anxiety Disorders Association of America has a new children's toolkit which includes "Special Focus on Anxiety Disorders in Children, Adolescent, and Young Adults, 2nd Edition," a collection of articles on diagnoses, causes, and treatment options. The kit also has two cassettes, three pamphlets, and two additional publications; it is available through ADAA's bookstore catalog, 301-231-9350.

Special Clothing

Do you or your child have special clothing needs? Glenna Kelsey designs and adapts clothing to suit individual needs. Glenna may be contacted in Malta at 406-654-1842.

Aging Together

The Center on Aging at Bradley University in Peoria, Illinois, is conducting a national study funded by the National Institutes of Child Health and Human Development on the challenges and rewards of parents as they age together with their adult children who have developmental disabilities. The Aging Together Project team would like to interview women, age 55 or older, who are living with an unmarried adult child age 22 or older who has a developmental disability. For more information, contact Trisha Benning at 1-800-244-4470.

ADA Materials

The following publications may be of interest if you have questions about the Americans with Disabilities Act (ADA) and how it applies to law enforcement:

• Commonly Asked Questions about the Americans with Disabilities Act and Law Enforcement (free)
• Questions and Answers: The Americans with Disabilities Act and Hiring Police Officers (free)
• The Police Response to People with Mental Illness ($4.00 and handling).

For more information, contact Rocky Mountain ADA at 1-800-949-4232.

IDEA Website

If you want to learn more about the recent Amendments to IDEA, litigation under Section 504, and changes in monitoring, state complain mechanism, mediation and hearings, visit Reed Martin's website at <<http://users.westco.net/~connie/>>.

Reed Martin has been active in special education rights for the past 27 years and has produced publications, videotapes, audiotapes, newsletters and presented at conferences in all 50 states. His website offers information on his currently scheduled conferences and new publications. There is also a question and answer feature which answers current questions and a Rights Alert section that addresses current issues.

Autism Research

Your family can make the critical difference in the pace of autism research. If you, or a family you know, have more than one person in your family affected by autism, please call 888-AUTISM2 or e-mail at <<familyAGRE@aol.com>> to register with the AGRE project.

AGRE, the Autism Genetic Resource Exchange, is the first collaborative autism gene bank to be established for autism research. It meets the highest scientific standards, but follow the parents' agenda: namely that time is of the essence for our children.

AGRE is sponsored by CAN, the Cure Autism Now Foundation, an organization formed by parents and researcher and dedicated to finding biological treatment and a cure for autism.

Special Olympics Communication On-line

A partnership between America On-line and the Special Olympics allows athletes, coaches, volunteers and family members to communicate through a website and with the AOL keyword "Special Olympics".

The partnership will help bring the Special Olympics information to many more athletes and community volunteers. For more information, visit:

<<http://www.specialolympics.org>>.

Mark Your Calendars

The following are conferences of interest to parents of children with disabilities:

October 14-16 -- Butte

Montana Conference on Developmental Disabilities, Call 406/444-2995

March 24-26, 1999 -- Missoula

CEC Spring Conference, Call 406/243-2900

Parent-to-Parent E-Mail Matches

E-Matches facilitates instantaneous, global communication among parents who have similar concerns, including diagnoses and treatments, medical procedures, and the availability of local resources and support groups. Parents can use E-Matches to make a one-on-one connection or create an on-line support group with several parents who share common circumstances.

To obtain more information about E-Matches, or to register for the program, send an e-mail message to: <<ematches@waisman.wisc.edu>>.

New Test for Early Detection of Down Syndrome

Earlier detection of fetal risk of Down syndrome may now be possible.

According to Laird G. Jackson of Thomas Jefferson University, a woman may be able to discover as early as the 11th week of pregnancy her likelihood of having a child with Down syndrome. Currently, screening for Down syndrome and other birth defects is done at 16 to 18 weeks gestation.

Earlier detection of DS would allow prospective parents more time to adjust to the news.

The new test combines ultrasound, a set of blood tests, and pregnancy-associated placental proteins. The combination test is set to undergo new studies at the National Institutes of Health. For more information, contact Laird Jackson at 215-955-6955.

Parent Reports on Training

Flo Kiewel, a parent from Columbia Falls, was the recipient of a training grant from the Office of Public Instruction through PLUK. Flo attended the 1998 Alexander Graham Bell Association for the Deaf 1998 International Convention in Little Rock, Arkansas from June 29 to July 3, 1998.

After returning from the conference Flo supplied the PLUK Library with some excellent materials for parents of deaf or hearing impaired children. She also wrote a long and detailed letter describing her experiences.

Attending my first AG Bell convention in Little Rock, Arkansas this summer, is an experience I will never forget. From the first hour I arrived, until the day I left, I was continually impressed and inspired by the people I met. It would take far too long to list all of the impressive oral deaf people who attended this conference, but to give you some idea: I met two medical doctors (one a woman), two dentists, at least one engineer, numerous writers, an editor, a few young businessmen, and I was told that approximately 70 of the attendees were lawyers.

Socializing went more smoothly than I expected. Everyone was in the same boat. Group conversations only had one person talking at a time, people did not talk over each other. Speechreading was standard, sign language almost nonexistent. People enjoyed visiting with each other and it seemed no different than any party, deaf or hearing, except that manual deaf parties are usually very quiet while these parties were very noisy. The oral deaf kids were just as social, and enjoyed visiting amongst themselves. They did not behave any differently than hearing kids, and I found them much more self confident and socially approachable than many deaf kids raised in the total communication method.

My attendance at short courses and program sessions was, made easier by the fact that interpreters were provided at almost all sessions. Some sessions had real time captioning where it was possible to read what was being said in the session. The two sessions that impressed met the most were "Assessment and goal setting: A demonstration" and "Towards self-advocacy. Computers helping children understand their hearing losses."

The assessment and goal setting information was somewhat over my head, bur fairly straightforward. The impressive part for me was watching a demonstration of how children are trained in the audio-verbal method. Three children of different ages from about 2 to 5 were brought up to the front to work with their therapist in front of the audience. The standard working method is to have one parent working with the child and therapist. If the child does not at first understand what is wanted, the parent models the expected response., then the therapist models the expected response, and the child is given a turn. Methods such as hiding the lips while speaking caused absolutely no distress in these children; in fact, they were obviously having a good time. Listening had become a challenging game for them.

The session on self-advocacy was presented by teachers from Sunshine Cottage, an audio-verbal school in San Antonio, Texas. I was very impressed by the computer program they had developed to help children learn more about their deafness. Deaf children were taught by an audiologist to understand their audiographs and what they meant. The children actually learned to plot their own graphs, in addition to studying the anatomy of the ear, and discovering all of the details of their own particular hearing loss, such as age of onset, causes, and recommendations. Each child made an ownership cared with the serial number of their hearing aids, volume setting, etc. All of this information was entered into an interactive database that the children created themselves to showcase their stories. In addition to this, the children are taught to care for their own equipment from an early age. They check their own batteries, wash their own earmolds once a week, and investigate any problems with FM systems. Charts are used to monitor and insure that each child is establishing a responsible routine. These routines were taught gradually over time. Videos showing the children interacting in the classroom gave the impression of very self-confident children who were not afraid to speak up for themselves. I felt that his program was an excellent example of giving deaf children responsibility for their own needs, rather than having teachers aides "take care of them." I firmly believe that self-advocacy should be taught starting as early as possible. A sample disk of this program is available for $7, but requires that you already have HyperStudio on your computer. Other materials on teaching this subject are also available from Sunshine Cottage.

I have learned a great deal about the audio-verbal method of teaching deaf children from attendance at this conference, both from the sessions and from meeting the successful adult professionals who were raised in this way. I firmly believe that his method should be discussed with parents as a viable option for any deaf child who has some usable hearing. It should be understood that a great deal will be required of parents in utilizing this method, and they must be prepared to extend a great deal of time in reinforcing audio-verbal training at home. Since we do not have an accredited audio-verbal school in Montana, it may be necessary to go out of state for schooling until the child is ready for mainstreaming. However, the results are well worth the effort, an any parent would agree upon seeing profoundly deaf children talking normally, engaging in normal conversation, singing, dancing, or playing the violin. It is not necessary for parents to give up their dreams for their children just because they are deaf; they can still become doctors or lawyers, or anything they want to be.

A video showcasing the audio-verbal method was premiered at the Opening Session. It has been sponsored by the Oberkotter Foundation, and they have three editions available free of charge to anyone who request one. The one hour version, which is the shown in the Opening Session, did receive some criticism by attendees for being overly sentimental; however, it is still an excellent film. There are two others also available, a 15 minute video, and a 30 minute video. I have not seen either of the shorter versions, yet. I picked up one additional copy of the hour-long version at the premiere to send to PLUK and have ordered a set of all three for myself. You may order as many as you like by calling: 1-877-ORALDEAF.

I am extremely grateful for the opportunity you have given me to attend this convention. I am now a member of AG Bell and intend to go to all conventions held in the future. I will be happy to share any information I receive with PLUK, and I am always available to share my personal knowledge and experience with any parent, child, or educator who would like to hear. If I cannot answer some questions, I will be able to connect you with the people who can

Sincerely,

Flo Kiewel

flowing@digisys.net

Parent Training Grants

Other parents who may be interested in receiving training at a national regional, or local conference can contact PLUK for an application for parent training grants. The a maximum amount for each grant is $1,200. A grant may be awarded only to one member of a family. Grant monies go quickly, so plan in advance if you are seeking a training grant. For more information, contact LeeAnn at the PLUK office (1-800-222-7585).

Living Without Limits: Disability Radio Show

Since its debut broadcast in 1995, Living without Limits, the disability community's first syndicated weekly radio program, has been a reliable source of news and information for the disability community of 54 million nationwide. The program is broadcast on a variety of community, university, and commercial stations, in addition to many Radio Reading Services. Living without Limits was created by, and is hosted by, Bob Enteen, Ph.D., former Director of Health Research and Policy Programs for the National Multiple Sclerosis (MS) Society. Dr. Enteen is a national authority on disability, aging and chronic illness, and the author of the book, Health Insurance, How to Get It, Keep It, or Improve What You've Got. He has been a guest speaker at over 400 conferences and is a featured expert on AOL/Time Inc.'s Thrive@Health web site.

In describing the program, Enteen has said, "Living Without Limits is a critical source of information for 54 million men, women, and children with disabilities in the U.S., and one of the most effective tools we have to raise awareness of issues surrounding disability, aging, public education, governmental policy, employment, and life-style. The real source of news comes from within the disability community itself."

The program was recently awarded funding by The Robert Wood Johnson Foundation and the National MS Society. It is a 1/2 hour interview (expandable to one hour), is taped at NPR studios in New York City and Washington DC and is currently broadcast on more than 25 stations nationwide, including Harlem, Montana. For information on Living without Limits and how you can bring this program to your local radio station or Radio Reading Service, contact Bill Rosen at the National MS Society: Bill.Rosen@nmss.org or call 212-476-0462. Living without Limits is also available on the Internet at:

<<http://www.thriveonline.com/health/benteen.html>>.

Transition Video: It's For You!

Don't forget that PLUK has developed a video on how to prepare your child with disabilities for the transition from school into adult living. Parents are often baffled by transition and what it means for their child. They may be puzzled about how to plan so that their child with disabilities will become employed after high school graduation, be able to attend college, pursue vocational education, or enter the military.

Parents are not alone in having questions about transition planning so PLUK produced a family-oriented 30 minute video called Pathways to Success. This video portrays five Montana students of different ages with different disabilities: Donna, Vanessa, Stephen, Sarah, and Beth, who are preparing to make their individual transition to adult living. The video provides parents and students with specific information about how to plan early and get ready for transition. The Pathways video is closed-captioned and is the quality required for broadcast on commercial or public television.

The Pathways video was premiered at the Montan Parents as Partners Conference a year ago in Butte. After the first showing, parents made the following comments:

There is so much information in the video. I could watch it over and over again.

The kids in the video are delightful!

Thanks for including the hidden disabilities, too.

I like the naturalness of the video. It gives you the feeling that you are visiting people in their homes and communities.

I like how the practical the video is. The suggestions seem to make sense and appear to be doable.

Seeing the video helped me to understand the concept of transition for the first time.

It was great to see a young woman going to college and speaking so confidently about her future. It as obvious that she was making her own choices.

I thought transition was something I wouldn't have to worry about until much later, but this video showed me that I need to get started now--even though my daughter is only five.

Parts of the video are very moving. You can tell how much the parents care about their kids and their futures.

I want my son's teachers to see this video.

The main point of the video is that students have different interests and needs so they must pursue individual pathways to successful transitions. The Pathways to Success video introduces parents to the wide variety of avenues that families can take in order to ensure a successful transition for their children as they mature to adulthood. The video clarifies what things parents must work on at home and what services are the responsibility of school districts or adult service agencies.

Along with the Pathways video, PLUK has published a 72-page Parents' Guide to Transition. The guide is meant to be a companion to the video and to supply additional specific information about how parents can develop transition plans to meet their children's individual needs and desires. The guide has been mailed to over 4,000 families and professionals through the Montana Transition Systems Change Project. Copies of the video are available on loan from the TRIC/PLUK Library or may be purchased for $12, including shipping.

Cochlear Implants in Young Children

In 1990 the FDA approved cochlear implantation in children age two years or more. Despite this regulation on age. S.B. Waltzman and N.L. Cohen (New York, Univ. Schl. Med., NY) report among 178 children they have been given implants are 11 who were less than two years of age at the time of operation. One was 14 months, a second 16 months. The rest ranged from 20 to 23 months. Follow up in the youngest has been 4-6 months. The authors report that all have received substantial benefit with no increase in risk when compared with older children. In fact, there were no complications in the infants.

In Germany, T. Lenarz et al have reported 46 children under two years of age who have successfully received cochlear implants.

The significance of these early implants is that having their hearing enhanced with implants allows very young children to experience oral language at a time that is critical for the development of their own expressive language. Having implants before the age of two allows these deaf children to hear speech sounds and imitate them in the same ways that non-hearing impaired children do. There is not enough data yet to determine whether early implants make a significant difference in terms of oral language growth. Longitudinal studies will provide more information about the overall effect of early implants.

Emotional Bank Account

In long-term relationships with teachers, therapists and administrators, parents need to develop trust relationships based on many acts of kindness and repeated instances of keeping commitments. When a trust relationship exists, then in times of conflict it is possible to acknowledge differences of opinion without destroying the basic relationship.

A metaphor which describes this process of building trust is the Emotional Bank Account. We all know what a financial bank account is. We make deposits into it and build up a reserve from which we can make withdrawals when we need to do so. An Emotional Bank Account operates similarly. A person can make deposits into another person's Emotional Bank Account through courtesy, kindness, honesty, and keeping commitments.

Consistently behaving toward another person in a courteous, honest, and reliable way builds up a reserve of trust. If the trust level is high enough, then the person can call upon that trust when conflict situations occur. In the special education process, there are many opportunities for parents, teachers, administrators, and students to make "deposits" in each other's emotional bank accounts.

The value of building up emotional bank accounts is that when someone makes a mistake or has to ask others to take risks or try out new ideas, already having a positive interpersonal history makes settling conflicts easier. When emotional bank accounts are full, there is trust among the participants in the special education process. In an atmosphere of trust, it is possible to make mistakes or disagree without destroying the underlying human relationships. In other words, building a trust relationship and making "deposits" into an Emotional Bank Account creates an emotional reserve to compensate for "withdrawals" that may need to be made in times of conflict.

If there is no prior relationship among the student, parent, administrator and teacher, then when conflict arises there may be no reserve of trust and the conflict may escalate. Or if anyone in the relationship has a habit of showing discourtesy or disrespect toward others, that person will quickly overdraw the Emotional Bank Accounts of others when there are disagreements.

As a parent working with professionals, think of some specific ways that you can fill up your Emotional Bank Account with others. What actions on your part create trust? What actions deplete your account?

Actions that Build Trust

• Understand the Individual
• Attend to the Little Things
• Keep Commitments
• Clarify Expectations
• Show Personal Integrity
• Apologize Sincerely for "Withdrawals".

Every Minute Counts

Imagine there is a bank which credits your account each morning with $86,400. It carries over no balance from day to day, allows you to keep no cash balance, and every evening cancels whatever part of the amount you have failed to use during the day.

What would you do? Draw out every cent, of course! Well, everyone has such a bank. Its name is TIME. Every morning, it credits you with 86,400 seconds. Every night it writes off, as lost, whatever of this you have failed to invest to good purpose.

It carries over no balance.

It allows no overdraft.

Each day it opens a new account for you.

Each night it burns the remains of the day.

If you fail to use the day's deposits, the loss is yours.

There is no going back. No drawing against "tomorrow." You must live in the present on today's deposits. Invest it so as to get from it the utmost in health, happiness and success!

The clock is running. Make the most of today.

To realize the value ONE YEAR, ask a student who has failed a grade.

To realize the value of ONE MONTH, ask a mother who has given birth to a premature baby.

To realize the value of ONE WEEK, ask an editor of a weekly newspaper.

To realize the value of ONE DAY, ask a daily wage laborer who has kids to feed.

To realize the value of ONE MINUTE, ask a person who has missed the train.

To realize the value of ONE SECOND, ask a person who has avoided an accident.

To realize the value of ONE MILLISECOND, ask the person who has won a silver medal in the Olympics.

Treasure every moment that you have! And treasure it more because you shared it with someone special, special enough to have your time...and remember, time waits for no one.

Yesterday is history. Tomorrow a mystery.

Today is a gift. That's why it's called the present!

Every minute is precious in the life of a child; spend time with your child today.

(Modified from the Internet, no author identified).

ALTERNATIVES TO SPANKING

One reason parents spank is that they are not aware of other effective strategies for changing children's undesirable behavior. To be effective, discipline that is appropriate for a child's developmental level should be used. Ineffective methods are often based on unrealistic expectations about what children are capable of learning. Parents may find the following developmentally-appropriate discipline suggestions to be useful alternatives to spanking.

Suggestions for Parents of Children at the 0-2 Developmental Level

Young children respond impulsively to many situations without a real understanding of potential danger or their own level of abilities. Parents sometimes resort to spanking in situations where there may be danger (e.g., running into the street). Unfortunately, spanking does not necessarily give the child a clear message. Spanking may cause fear and anxiety in children who do not yet understand such concepts as consequences and danger. More effective discipline measures can be used to teach children about dangerous situations and lead them into safer behaviors.

1. When there is danger, grasp the child's hand instead of slapping (Leach, 1996).
2. When the child is holding something that you do not want him or her to have, trade a toy instead of forcing the item from the child (Leach, 1996). The child will only hold on tighter if you try to take something away.
3. Child-proof your living space so that there is nothing dangerous or breakable in reach (Ruben, 1996; Samalin & Whitney, 1995).
4. Leave the room if you feel your temper flaring, making sure that the child is in a safe place during your absence.

Suggestions for Parents of Children at the 2-5 Developmental Level

Disciplining children who are ambulatory and verbal requires a tremendous investment of time, energy, and patience, so it is important to find effective and appropriate techniques (Ruben, 1996). For example, it will not be effective to tell children not to play with items that are dangerous, such as the stove, because they do not understand the consequences (Samalin & Whitney, 1995). Spanking, however, will not clarify the consequences either. Instead, children may learn from spanking that "I'm a bad person," rather than "I did a dangerous thing." With young children, it is important to distinguish between behaviors that are impulsive or unintentionally dangerous and behaviors which are noncompliant.

To prevent dangerous behaviors, consider the following:

1. Make sure the environment is safe by removing any harmful or dangerous objects (Samalin & Whitney, 1995).
2. It is natural for young children to want to explore their environment. Always supervise young children; it is unrealistic to expect a child to play safely without adult supervision for more than a few minutes (Leach, 1996).

If a child is balky or uncooperative or openly defiant, consider these techniques:

1. Avoid direct clashes which will only make both of you angry and frustrated. Instead, try a diversion or distraction (Leach, 1996). Many problem situations can be eased with something funny or unexpected, such as tickling a mildly upset child (Ruben, 1996).
2. Use your size and strength to eliminate situations (Leach, 1996). Simply lift a child out of the bath or carry a child who refuses to walk.
3. If you start to deliver a slap, divert it to your knee or a table (Leach, 1996). This sound will interrupt the behavior without hitting the child.

Suggestions for Parents of Developmentally Older Children

1. When you start to feel angry with your children, clap your hands loudly (Leach, 1996). The sound will interrupt their behavior.
2. If your child refuses to listen to you, crouch down to the child's level, grasp the child's arms firmly so he or she cannot avoid looking at you, and then talk calmly (Leach, 1996).
3. Since spanking does not occur in calm, rational moments (Samalin & Whitney, 1995), it is especially important to control your anger to prevent "losing it." You can walk away, hit a pillow, call a friend, or write a note. Once you have cooled down, you will probably feel less inclined to spank.
4. If you feel you must punish your children, make sure the punishment is logically related to the incident so that they can learn the lesson you want to teach (Leach, 1996). For example, if your child rides a bike onto the road, take the bike away for the afternoon. This punishment teaches the child that roads can be dangerous, that you are concerned for the child's safety, and that you will enforce safety rules as long as they are needed. Taking away TV, dessert, or spanking will not teach bike safety.
5. Introduce the appropriate use of time-out (Ruben, 1996). Time-out used as a punishment is controversial. When used to allow a few minutes for a child--and a parent--to regain control of their emotions, it can be effective in stopping a cycle of inappropriate behavior. A general rule of thumb is using a minute of time-out for each year of the child's age (e.g., two minutes for a two year-old, 5 minutes for a five year-old).

Suggestions for All Ages

1. Support good behavior. Hugs and praise will go a long way (Ruben, 1996).
2. Try an ounce of prevention (Ruben, 1996). Effective discipline means announcing clear, simple family rules (the fewer, the better) at a time when children are calm and listening.
3. Try to understand the feelings behind your child's actions (Ruben, 1996). Ask older children why they are angry. When an infant cries, ask yourself: Does my child want to be held? Is the baby's diaper wet? Is my child hungry?
4. Share your change of heart (Ruben, 1996). If you have spanked your children in the past, but have decided that you will stop, talk to your children about your decision. This lesson can be valuable for your whole family.

CONCLUSION

The question of whether or not parents should spank their children is not easy to answer. However, spanking is only one of the factors that needs to be considered in the overall discipline process. In deciding how to discipline their children, parents should first ask, "what do I want to accomplish?" If the answer is "teach my children how to make good choices on their own," spanking may not be an effective technique.

FOR MORE INFORMATION

American Academy of Pediatrics. (1995). Caring for your school-age child: Ages 5-12. New York: Bantam Books.

Flynn, C. (1996). Regional differences in spanking experiences and attitudes: A comparison of northeastern and southern college students. Journal of Family Violence, 11(1), 59-80.

Leach, P. (July 9, 1996). Spanking: A shortcut to nowhere. (WWW document). URL: <<http://cnet.unb.ca/orgs/prevention_cruelty/spank.htm>>.

Ruben, D. (Sept. 1996). Should you spank? Parenting, 136-141.

Samalin, N., & Whitney, C. (May 1995). Parents, 70 (5), 35-36.

Scarr, S. (Feb. 8, 1995). Southern parents spank children more than northern parents, study finds. (WWW document). URL: <<gopher://minerva.acc.Virginia.EDU:70/00/news/prour/Feb1995/spanking>>.

Straus,M. (1995). Beating the devil out of them: Corporal punishment in American families. New York: Lexington Books.

Folic Acid: Prevention of Neural Tube Disorders

The American College of Medical Genetics (ACMG) supports the regulations of the Federal Drug Administration (FDA) which will require the fortification of enriched grain foods with folic acid. Folic acid has been found to be a key nutritional factor in preventing the occurrence of neural tube disorders like spina bifida.

ACMG, however, argues that the FDA recommended levels of folic acid may not be enough to prevent neural tube defects. ACMG favors the following: (1) Foods should be fortified at levels increased from the current FDA recommendations of 0.14 to 0.28ug/100g of grain; (2) Women in their reproductive years should, in addition, take 0.4 mg of folic acid daily, either alone or in a multivitamin preparation. This is particularly important prior to conception; (3) Women with a history of a previous pregnancy affected with a neural tube defect are advised to take 4.0 mg of folic acid daily, starting at least one month, and preferably three months, prior to conception; (4) Adults should be advised of the benefits of folic acid supplementation to reduce the risk of cardiovascular disease.

Though the ACMG has made its specific recommendations to the FDA, the Federal Drug Administration has not acted on them.

Fibromyalgia Syndrome

Fibromyalgia syndrome (FS) is a non-inflammatory disorder characterized by diffuse pain and specific tender points found on physical examination. The cause is unknown. The medical community once thought that FS was a disease seen only in adults, but now there is evidence that children also may have FS.

Besides muscle and joint pain, fibromyalgia may cause other symptoms, including fatigue, stiffness, sleep disturbance, weather-related changes in muscle pain, headaches and anxiety. In the Pediatric Rheumatology Clinic at the University of Rochester NY records were reviewed of 45 patients with symptoms and signs consistent with FS. Forty-one of the 45 subjects (91%) were females. All had been investigated for alternative diagnoses to explain their symptoms. Over 90% of patients experienced diffuse pain and 96% had sleep disturbance. The next most common symptoms were headaches (71%), general fatigue (62%) and morning stiffness (53%). Less than half experienced morning fatigue, depression, feeling worse with exercise, swelling, irritable bowel symptoms, dysmenorrhea, illness changes with weather, anxiety, and lack of energy.

FS was the third most frequent diagnosis at this pediatric rheumatology clinic. Thus, the condition is not rare. The most important factors in coping with the illness appear to be medication to help with sleep (usually anti-depressants) and having a positive outlook. For some, exercise was also helpful.

The clinical manifestations of FS in children resemble those seen in adults, except that sleep disturbances is highly prevalent in children and the number of tender points required (especially at an initial visit) to establish the diagnosis is often fewer than the 11 customarily required in adults.

PLUK cyberNews

News for parents, educators, and individuals with disabilities from the technology front: the internet, computer hardware, software, and assistive technology.

Software to Help with Reading Challenges

IBM and Arkenstone, Inc. have announced new software to help the estimated seven to 50 million Americans with dyslexia read more effectively. Named WYNN, for "What You Need Now," the easy-to-use application is a comprehensive software reading study tool available for people who have dyslexia and other reading and comprehension challenges.

Using speech technology from IBM, What You Need Now can read electronic text aloud to the users, as well as spell and define words. Through a microphone that is included with the software, users can insert voice notes into an electronic document. By simultaneously viewing the text and hearing it read aloud, people with dyslexia or other reading challenges can take advantage of both auditory and visual cues in order to comprehend the material better.

What You Need Now lets the users easily modify or customize the information on the screen by increasing the size, changing the character and word spacing, or changing the color of the background or print. By customizing the presentation of information on their screen, users can provide themselves with additional clues that help with decoding and comprehension.

WYNN software allows users to view both electronic and scanned text, such as textbook pages or documents which retain their original page layout. Through WYNN's Optical Character Recognition (OCR) feature, users can scan printed documents into the application for viewing and modifying using common industry optical scanning hardware that is supported by the product.

For users who do not require materials to be scanned into the application, WYNN Reader is also available without the OCR or scanning feature.

WYNN is available through Arkenstone, Inc. in U.S. English. Arkenstone's suggested retail price in the United States for WYNN Reader is $399. WYNN OCR which includes the scanning technology is $995. School systems can purchase site licenses for multiple copies of WYNN. Special upgrade pricing is available to school systems and individuals using other Arkenstone reading software, such as Open Book.

System Requirements; IBM or IBM-compatible Pentium personal computer; Microsoft Windows 95, Windows 98 or Windows NT 4.0 or higher; VGA video cards; monitor with 640 x 480 resolution and 256 color mode; 16MB of RAM (32 MB RAM recommended for Windows 95, 64 MB RAM recommended for Windows NT) and 45 MB of available hard disk space. For speech capabilities, a Sound Blaster or 100 percent compatible sound card is required.

To purchase WYNN or for more information, contact:

Arkenstone, Inc.,

NASA Ames Moffett Complex, Building 23

P.O. Box 215, Moffett Field

California 94035-0215, USA

(800) 444-4443; (650) 603-8880

FAX +1 (650) 603-8887; TDD (800) 833-2753

<<http://www.wynn.arkenstone.org/>>.

HONOR ROLL

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

Bob Runkel, State Special Education Director

"Bob has had a tough year. For whatever reason, he has received a lot of personal attacks concerning the changes in special education law. These attacks are undeserved! Bob works very hard to be fair to all the stakeholders in the special education process. We are very lucky to have such a wise and thoughtful person in this role."

"Did you know that Bob Runkel did student teaching this summer. Bless him for making the effort to find out what it is like in the trenches!"

"Bob Runkel makes himself so accessible to everyone--including parents. I cannot believe how gracious he is about coming to parent events and answering our questions."

Carolyn Clark, Resource Teacher, Huntley Project Schools

"Mrs. Clark is the best teacher of any kind that my daughter has ever had. She makes the students work hard, but she is always kind. She really helps the learning disabled students learn. After working with Mrs. Clark, the kids can see themselves making progress, and it makes them feel so good about themselves."

If you know of an educator who deserves to be on the Honor Roll, send your nomination to PLUK, 516 N 32nd St, Billings MT 59101. 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.

End of the PLUK NEWS August/September 1998

Copyright © 1998 Parents, Let's Unite for Kids, all rights reserved.