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PLUK News April / May 1998 Volume 12 Number 9/10
	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

IDEA Under Attack Again Goals 2000 Funding Available Date for IEP Requirements Changes SSI Status Update Governor's Summit on Youth Special Ed Costs Estimated Other Congressional Actions Guidance Given for Residential Placements Managed Care Exec Resigns Expedited Hearing Held in Darby Lifelong Respite May Be Possible ASK PLUK??? Parent Corner ADHD Documentation Guidelines ADHD & HKD

ADHD May Precede Bipolar Disorder Language Disorders and ADHD, OD, etc Genes Play Big Role in Mental Disorders Bipolar Illness Must Be Treated Aggressively Model Mental Health Project Dyslexia and Brain Function Recordings of Books Available Genetic Testing Could Lead to Problems Public Telephones and Access Guidelines on Neurofibromatosis Defective Gene Causes Disorders Woman with DS Writes Poetry Summer Fun for Everyone! Summer Activity Updates Parents' Essays Wanted

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IDEA Under Attack Again!

When Congress returned after the Easter recess, a series of education-related amendments were proposed to be added to HR 2646 (Cloverdell Bill). Among these amendments were changes intended to weaken or repeal the Individuals with Disabilities Education Act (IDEA), including Sen. Gregg's (R-NH) IDEA Flexibility Amendment which would have effectively repealed IDEA.

Specifically, this amendment proposed to permit state and local education agencies to establish their own discipline policies. Disability advocates had argued during the reauthorization process for IDEA '97 that returning discipline exclusively to state and local control would mean a return to the circumstances that existed prior to 1975 when children with disabilities were repeatedly excluded or pushed out of school because of behavior related to their disabilities. Even though disability advocates were successful in helping to craft a balanced discipline provision in the reauthorization of IDEA that was signed in June 1997, some general education groups have continued to lobby against IDEA, spreading many unsubstantiated claims about behavior of special education students that endangers the general school population.

Amidst the controversy that the Gregg Amendment generated, Congressional leaders agreed to schedule joint House and Senate hearings on April 22, the same week as the debate and vote on the Cloverdell Bill. Much of the testimony which was offered was very moving and, at times, disturbing for parents to hear. Judith Heumann, Assistant Secretary for OSERS, spent 2 1/2 hours responding to questions from both the House Committee on Education and the Workforce and the Senate Labor and Human Resources Committee. In particular, Ms. Heumann addressed questions regarding the regulatory process for IDEA '97.

Regulations that give guidance as to how IDEA '97 should be implemented have been developed and put out for review by the U.S. Department of Education. Some Republicans have objected to the Department's proposed regulations on discipline for students with disabilities and on the regulations which define a general curriculum. Unfortunately, discussion of the proposed regulations has reopened contentious debate between special and regular education groups and has caused the carefully crafted collaborative relationship between special and regular education to break down.

In the end, Sen. Gregg was persuaded not to enter his amendment. Senator Paul Wellstone (D-MN) agreed to withdraw his amendment to the Cloverdell Bill to offset Gregg's withdrawal. This was a most gracious move on Wellstone's part--an indication of his willingness to rebuild bipartisan support for IDEA '97 as it was written.

Gorton Does Not Give Up

Even though Sen. Gregg agreed to withdraw his divisive amendment, Sen. Slade Gorton (R-WA) was not willing to give up his efforts to undo the compromises on discipline in IDEA '97. Senator Gorton went back to the Senate floor and proposed this amendment to IDEA:

Notwithstanding any other provision of this Act, each SEA or LEA may establish and implement uniform policies with respect to discipline and order applicable to all children within its jurisdiction to ensure safety and an appropriate educational atmosphere in its schools.

Special education groups have vigorously opposed this amendment every time that Gorton has offered it because of fear that it would gut due process protections for students with disabilities.

President Clinton has indicated that he will veto the Cloverdell bill should it come to him. It is unlikely that there are enough votes in Congress to override a Presidential veto of this bill.

Montana Senators Split on Gorton Amendment Vote

The Gorton Amendment was offered as part of a bill sponsored by Sen. Paul Cloverdell (R-GA) that would establish tax-free education savings accounts. The Gorton Amendment passed in the Senate by one vote, 50 to 49.

Sen. Max Baucus voted against the Gorton Amendment and Sen. Conrad Burns voted for the Amendment.

IDEA Funding Not in Clinton Budget

Despite talk of increasing federal funding for special education, the Clinton Administration's proposed budget does not include any new dollars to support IDEA. In response to this omission, a bipartisan group of lawmakers has introduced a resolution urging Congress and the Clinton administration to meet the federal government's funding commitment to the IDEA.

Under IDEA, the federal government is authorized to pay 40 percent of the additional costs states would incur by implementing special education programs. However, Congress has yet to come anywhere close to that promise, with the yearly federal share consistently coming in at less than 10 percent.

To address the issue, a bipartisan group of 25 lawmakers--21 Republicans and 4 Democrats--have introduced a resolution in the House urging Congress and President Clinton to move diligently in meeting the federal IDEA commitment. According to these senators, the federal government's failure to meet its commitment "represents a massive unfunded federal mandate on the states and localities of an estimated $10 billion per year"

The resolution was referred to the House Education and the Workforce Committee, where it has the support of committee chairman Bill Goodling (R-PA). The committee is scheduled to mark up the resolution in May.

Democratic Senator Seeks to Balance Funding for Education

Sen. Patty Murray (D-WA) plans to introduce an amendment aimed at continuing the debate on special and regular education funding.

The amendment would establish a deficit-neutral reserve fund to help reduce class size, especially in the early grades. It would combine President Clinton's general education spending levels, including his new education proposals, with the GOP plan for special education.

Clinton's budget essentially level-funded special education, while proposing billions of dollars worth of new programs. The Senate budget resolution contains no funding for Clinton's new plans, but would increase special education funding by $2.5 billion over five years, including $500 million next year.

Goals 2000 Funding Available

In April an application notice was published in the Federal Register announcing that nearly $4 million is available to school districts in Montana over the next two years through the Goals 2000 Comprehensive Local Reform Assistance grants. Applications will be accepted through late May and two-year wards will be made in early August to approximately 25 Montana school districts or consortia of districts. If you have questions about these grants, contact Jay McClain of the U.S. Department of Education at 202-260-2225.

Effective Date for IEP Requirements Changes

Judy Heumann and Tom Hehir of the U.S. Department of Education have announced in a Memorandum dated April 28, 1998, that the new requirements in IDEA '97 for aspects of the IEP will be required only for IEPs developed on or after July 1, 1998. In other words, school districts will not be held accountable for the IDEA '97 changes until IEPs are written or revised on or after July 1, 1998. This change in interpretation gives school districts a few more months to prepare their staffs and disseminate new IEP forms that reflect the changes.

Less than a year ago, with the passage of IDEA '97, the Congress expressed its overwhelming support for improving educational results for children with disabilities. Most provisions of the law took effect upon its signing in June 1997, with the implementation date for other provisions being specified at later dates.

The Individualized Education Program (IEP) is the centerpiece of this landmark legislation. The effective date for new IEP provisions was delayed until July 1, 1998. Because of the importance of appropriate implementation of the critical new IEP provisions, the U.S. Department of Education is allowing a bit more time for school districts to bring all of their IEPs up to the new standards. IEPs which were developed this spring using the old requirements will have to be revised some time during the 1998-99 school year to reflect the changes in IDEA. Certainly, all active IEPs written on or after July 1, 1998, will address all of the new requirements under IDEA '97.

It is important to note as well that this delay in implementation applies only to those IEP provisions that were not required prior to IDEA '97; for example, the requirement regarding that a regular teacher be a member of the IEP team, and the requirement that the IEP contain an explanation of the extent, if any, to which the child will not participate with nondisabled children.

On the other hand, school districts must implement other requirements under IDEA '97 that are already in effect, such as the participation of children with disabilities in State and district-wide assessments (but not the alternate assessments which are not required until July 1, 2000). In addition, school districts must comply with the requirements of Section 504 of the Rehabilitation Act or those in effect under IDEA even before the enactment of IDEA '97, such as providing children with disabilities with access to the general curriculum and the obligation to provide the services identified by the IEP team as necessary for the child to receive FAPE, which, depending on the individual educational needs of the child, could include instruction in Braille and its use, assistive technology and the provision of technology services and devices, services addressing language and communication needs, and positive behavioral strategies.

SSI Status Update

A year ago the Supplemental Security Income (SSI) program for children with disabilities served about one million children, providing them with modest cash benefits and, in most states, Medicaid. Since then about 275,0000 children have undergone a review to determine if they still qualify for SSI under the new eligibility rules required by welfare reform.

Toward the end of 1997, about 143,000 children had lost their SSI eligibility under the new SSI rules; of those, about 77,000 families questioned the eligibility decision and began the lengthy appeal process. Although SSI regulations permit children who are appealing a denial of eligibility to ask that their SSI benefits continue during appeal, only around 44,000 asked for continuation. Because of problems encountered during this review process, the Social Security Administration (SSA) invited families who had not appealed to do so. This "second chance" began in early 1998 so figures about appeal rates are not yet available. SSA now predicts that about 110,000 children will lose SSI.

Despite SSA's invitation to families to appeal, families have not done so because they find the process discouraging and confusing. Perhaps this confusion accounts for the low number of appeals reported by advocates in the states. The SSI appeal process is complicated, in most cases requiring expert assistance, but there is no automatic way for families to get such help. The American Bar Association (ABA) created the Children's SSI Pro Bono Project to encourage the formation of statewide volunteer coalitions to provide information to families and to help them find pro bono attorneys through tollfree hotlines in every state.

Many children losing SSI are also losing Medicaid. In states like Montana where SSI and Medicaid are linked, Medicaid is obligated by law to assure that a child losing SSI continues Medicaid benefits. However, many state Medicaid agencies have not developed a smooth process for continuation of Medicaid. Consequently, there are children with severe disabilities who not only lose their SSI cash benefits, but Medicaid as well. At this point, it is impossible to know how widespread this problem is.

Many questions about children's SSI remain. How many children ultimately lost SSI benefits during the reviews? How many families appealed the denial of benefits? Did they have attorneys or other advocates to help them? If they appealed, what is the status of their cases? How many children who lost their SSI eligibility also lost Medicaid? How many new children will be denied SSI under the new rules? Were children who lost SSI referred to other programs? And finally, do we know what has happened to these families and their children who are, by the nature of their disability and a low family income, especially vulnerable? There are no clear answers for most of these questions.

There is some good news in regard to SSI. Every state now has a tollfree SSI hotline run by advocates. In Montana, contact legal aid at 1-800-666-6899 (Western) and 1-800-999-4941 (Eastern). Congressman Bobby Rush (IL) has introduced legislation to improve portions of the children's SSI program and would like cosponsors. Call Susan Rosenblum at 202-225-4372 for details.

There will be a Senate hearing on SSI sometime in May. Families willing to testify about their child's loss of SSI may call Dawn Wardyga at 401-222-1185.

The American Bar Association's SSI Project, the Kennedy Foundation, and other national advocates are discussing strategies to improve the SSI program, gather data about the redetermination process, and address the impacts of the loss of SSI on children with disabilities and their families.

Every state's Title V/Children with Special Health Care Needs (CSHCN) program receives a monthly list of SSI denials and approvals. CSHCN can serve as a mechanism to connect children with disabilities and their families to services, even if they do not qualify for SSI. Call Sharon Wagner at 406-444-3617.

Governors' Summit on Youth

The Governors' Summit on Youth: Montana's Future had been scheduled for June 14-16 at the Holiday Inn in Billings. The summit will feature national speakers and presenters, interactive workshops, discussion groups and panels, volunteer technology, and information, support and assistance to allow participants to build community coalitions to meet the needs of Montana's children and youth. Governor Marc Racicot and Lieutenant Governor Judy Martz are serving as chairs for the Summit. Four former Governors are backing the Summit: Tom Judge, Tim Babcock, Ted Schwinden and Stan Stephens. More information about the Summit can be obtained at the following website: http://www.mt.gov/mcsn/summit.htm.

Special Ed Costs Estimated

The U.S. Department of Education estimates the national cost of special education to be $36 billion or about $6,430 per student. For comparison, the per-pupil figure was estimated at $2,557 in 1968-69, $4,644 in 1977-78, and $5,059 in 1985-86, based on national cost studies.

According to the 19th Annual Report to Congress on the Implementation of the IDEA, there is faster growth in special education enrollment as compared to the overall school population. From 1990-91 through 1994-95, the school-age special education count increased by 12.6 percent as compared to a 7.3 percent rise in total school enrollment.

Some of the growth is due to rapidly increasing preschool enrollments under the Part B Preschool Grants Program and by recent increases in early intervention services for the birth-through-2 population.

In addition, the increased population of students being served under the IDEA may include students previously served by other public agencies or third-party payers; for example, students with severe disabilities previously served by health care, mental health and social services agencies.

Socio-demographic factors also play a role in rising enrollments and costs. The population of school-age children is becoming increasingly diverse and in need of special services.

Congressional Action Not to Administration's Liking

The Senate has rejected a series of alternatives to a bill authored by Senator Coverdell (R-Georgia) that would allow tax-free savings accounts for K-12 education. Among the legislation defeated was an Administration backed substitute measure, introduced by Senator Moseley-Braun (D-Illinois), that would provide $22 billion in tax-free bonds for school modernization. School modernization is a priority for President Clinton because one third of U.S. schools need major repairs and more than half have major building problems. Secretary Riley of the U.S. Department of Education has said that the tax-free accounts bill does not do enough for middle income families. The bill, he has explained, proses a tax break that on average will bring just $7 extra into the home of Americans with public school children by 2002 and just $37 to taxpayers with children in private schools.

The Senate also rejected other proposals supported by the Administration to help hire 100,000 new teachers through partial forgiveness of student loans. It approved proposals to encourage teacher testing and merit pay and to sanction same-sex schools and classes. President Clinton has said he will veto the Cloverdell bill if it remains in its present form.

Guidance Given for Residential Placements

Under IDEA, residential placement is considered one of the most restrictive educational placements. Thus, for a student to be placed in a residential setting requires significant documentation that the student's needs cannot be met in a less restrictive placement within the school district. The issue of residential placement is a contentious one, and there are not explicit guidelines in the law to provide guidance in determining whether a residential placement is necessary for educational purposes.

A New Jersey case provides some helpful suggestions for points to consider in determining whether a residential placement if required. In D.B. v. Ocean Township Board of Education, a federal district court judge designed a nine-factor test for determining whether a residential placement is appropriate for a student with disabilities. The nine questions are:

1. Has the district attempted to include the student to the maximum extent possible;
2. What are the educational benefits in a local placement versus those in a residential placement;
3. What is the effect of inclusion of the special needs student on the education of classmates;
4. Does the student have physical or mental conditions which prevent him or her from learning in a school district placement;
5. Does the student's behavior limit his or her ability to learn in a district placement or has the student been regressing to the point where he or she cannot learn in the district placement;
6. Has any professional exposed to the child through work, therapy, or other activities recommended a residential placement for educational purposes;
7. Is the student's potential incapable of being realized except through a residential placement;
8. Has past experience led to the conclusion that a residential placement is necessary;
9. Is the residential placement required for the student to make educational progress.

Managed Care Exec Resigns

The top Montana executive for the state's managed mental health contractor announced her resignation in April.

After nearly 16 challenging months as executive director of Montana Community Partners (MCP), Jani McCall quit her position.

In a prepared statement, McCall described her hope that in her job she would help create a mental health system that is "responsive, respectful and caring." She said her job is "no longer viable" for reaching that goal.

Claims payment issues continue to be the main challenge plaguing the new managed care system. Randy Poulsen, Department of Public Health and Human Services managed care chief whose job includes pressing the managed care contractor to fulfill its contract and improve the program, has said that lack of authority for the executive director has been a problem. According to Poulsen, the contractors have not allowed the local executive director to make decisions that had to be made quickly.

No other major resignations have been announced, but Montana Community Partners continues to have a number of staff vacancies, including some key management positions that have been open for some time.

A Montana native and longtime head of Youth Dynamics Inc., a Billings nonprofit organization that provides therapeutic foster care for children, McCall was well-known in Montana before Montana Community Partners and its out-of-state corporate partners won the $6 million-a-month contract to manage virtually all government-funded mental health care for Montanans. McCall started working for MCP in January 1997. The managed care program began its work on April 1, 1997. Since then, the managing partner--the company that employs the executive director--has changed twice.

CMG Health of Owings Mills, Maryland, won the state contract, but drew widespread criticism for not providing a program that met Montana's needs and for failing to use recommendations from its Montana staff. Then Merit Behavioral Care of New Jersey bought CMG. By most accounts, the program has improved administratively under Merit, but still has far to go to fulfill contract commitments. Most recently, Magellan Health Services of Atlanta bought Merit. However, the Merit executives who were supervising the Montana program have continued in that capacity.

Expedited Hearing Held in Darby

In what appears to be the first expedited hearing conducted under the 1997 amendments to the IDEA, Hearing Officer Ross Cannon has overruled a decision of a Child Study Team that the Behavior of an emotionally disturbed student was not a manifestation of his disability. Under the IDEA amendments adopted last June, a school district may not expel a special education student for behavior which is a manifestation of a disability unless the student presents a danger to himself or others or the behavior involves possession of a weapon or a controlled substance. Where the behavior is not a manifestation of a disability, a district may expel a special education student in accordance with its general disciplinary policy. In all such cases, however, special education students must continue to receive educational services beginning on the eleventh school day following a suspension or expulsion.

In this case the student was expelled for 45 days for breaking a behavior contract entered into with the board as a result of previous misconduct. The Child Study Team voted 4-3, with one abstention hat the behavior was not a manifestation of the disability. Immediately following the vote, the parties participated in a due process hearing in which committee members testified on opposite sides of this issue. In reaching his decisions, the hearing officer gave significant weight to the testimony of the clinical psychologist who had first determined that the student was emotionally disturbed and who had contended that his behavior was a manifestation of his disability.

Lifelong Respite May Be Possible

Montana's Department of Health and Human Services are examining the possibility of providing a new respite care program to assist families overwhelmed by the demands of care giving.

Because respite care provides temporary relief to families coping with a variety of issues, such as developmental disabilities, physical disabilities and domestic violence, individual programs within DPHHS operate their own respite systems. To combine the recruitment, training and referral facets of respite systems under one local existing agency, the department is now examining an innovative project known as Lifespan Respite.

Lifespan Respite originated in Oregon and is a service delivery model which establishes local systems of respite care. It also provides a single point of contact for care givers seeking relief. According to Jan Spiegle-Stinger of the Disability Services Division, "Over 60 Montana respite care providers support his concept. They have come together to support the development of Lifespan Respite models in our state and to develop the Montana Lifespan Respite Coalition."

In January, 1998, the coalition presented the new respite concept and garnered the support of DPHHS Director Laurie Ekanger, division administrators and a strategic planning group. An executive planning proposal to support two pilot projects is underway; the pilot sites are yet to be determined.

For more information about this proposed program, contact Independent Living Specialist Vicki Turner in the Disability Services Division at 406-444-4175.

ASK PLUK???

Q: Every time we have an IEP meeting for our son, there is a "cast of thousands" there representing the school district. My husband and I find this to be overwhelming. We can't seem to relate to that many people all at once. Isn't there some way of making the group smaller? Just who are the required members of the IEP Team?

A: The required members of the IEP Team include: a district representative, the child's teacher, the parent(s), and the child, if appropriate. Other individuals may participate as well at the discretion of the parent or the school district. Other invited members may include: family members or friends of the child, extended family, or community members; agency personnel; advocates; independent evaluators or specialists; employers; medical specialists; or private counselors.

The IEP Team is meant to be a decision-making group. In general, it is difficult for a large group to make decisions in a timely manner. The ideal IEP Team is small and focused on the needs of the student. Members should be knowledgeable about the law and the school district. At the discretion of the parent or the district, other individuals who have knowledge or special expertise regarding the student, including related service personnel, may be included as team members. A representative from any other agency (e.g., Vocational Rehabilitation, Department of Health and Human Services, rehabilitation facilities) that is likely to be responsible for providing or paying for services may also be a team member.

Each of the IEP Team members plays a distinctive role in the process. The following are brief descriptions of the role of each required team member:

District Representative. The district representative must be qualified to provide or supervise the provision of special education to meet the unique needs of students with disabilities. The representative must be knowledgeable about the general education curriculum and about the availability of resources in the district. He or she should be able to commit school district resources, make decisions about the specific special education and related services the school district will provide, and ensure that whatever services are enumerated in the IEP will actually be provided. The district representative must be someone other than the child's teacher. He or she may be a building principal, a special education administrator, a superintendent, or an administrative designee (e.g., guidance counselor). The district representative must actually be present and participate in the IEP meeting.

General Education Teacher. The teacher may be the sending or possible receiving general education teacher or a teacher designated by the school district for a child who is not in school or a child who has more than one teacher. A general education teacher is required to participate in developing the IEP if a student is, or may be, participating in the general education environment. The teacher should be knowledgeable about the needs of the child and should be prepared to contribute to: (a) the content of goals and objectives; (b) the determination of appropriate positive behavioral interventions and strategies; and (c) the development of supplementary aids and services, program modifications, and supports needed for school personnel to provide services to a student.

Special Education Teacher. This individual is generally the student's current special education teacher. In the case of a student receiving services from a speech/language pathologist, but not a special education teacher, it would be more appropriate for the speech/language pathologist to be this member of the IEP team. If a student is being served in special education for the first time, the special educator should be the individual who is likely to be implementing the IEP with this child.

The special educator contributes expertise concerning individualized educational approaches, behavior management techniques, and classroom modifications and accommodations that may be necessary to assist the student to meet his or her goals and objectives.

Student. A student should be invited to participate in the IEP meeting, whenever appropriate. A secondary student, beginning at age 14 years, must be invited by the district to attend any IEP meeting at which transition is to be discussed. If the student is unable to participate in the meeting, suggestions from the student must be solicited and presented by an IEP team member at the transition planning meeting.

Parent. The emphasis in the law is on parental participation. Parents are intended to be active participants in the IEP team meeting and must be given the opportunity to share ideas, thoughts, and suggestions regarding the IEP. The school district must take steps to ensure that one or both parents of a student with a disability are present at the IEP meeting or are afforded the opportunity to participate. Written parent consent for placement is required at the initial IEP team meeting.

The term parent refers to a natural parent, a legal guardian, a person acting as a parent, or a surrogate parent who has been appointed by the Youth or Tribal Court. The term "acting as a parent" includes persons such as a grandparent or stepparent with whom the child lives as well as persons who are legally responsible for the child's welfare. The term does not include state agency personnel if the student is a ward of the state.

It is not necessary to have any other people at the IEP meeting unless their presence would contribute to writing the IEP. As a parent, you can certainly ask in advance of the IEP meeting who plans to attend. You can discuss with your child's building principal or guidance counselor your desire to keep the number of participants at the IEP meeting to a small number so that the discussion can remain focused and you and your husband can feel that you are really getting to know the other team members.

Q: When and how can I file a complaint because the school district is not implementing the law correctly?

A: The complaint process is to be used when a parent thinks that a school district has failed to follow state or federal law in providing student with disabilities a free appropriate public education. To file a complaint, the parent must send a written and signed complaint that includes a statement that the school district has violated a requirement of the law and the facts on which the statement is based. A complaint form is available from the Office of Public Instruction or from the PLUK office. The complaint must be filed with the Compliance Officer, Office of Public Instruction, P.O. Box 202501, Helena MT 59620-2501. If you need help in filling out the complaint form, contact your regional PLUK Representative who will be happy to assist you.

Q: If I decide to take a special education issue to due process, do I have to have a lawyer?

A: A due process hearing is a formal administrative hearing presided over by an impartial hearing officer. The proceedings are conducted very much like a court hearing. In general, the school district will have an attorney who will be well versed in the rules of evidence and procedures for presenting the school district's point-of-view. For the parents to have any chance of doing a good job of presenting their viewpoint, they will also need to have an attorney, though an attorney is not required.

PLUK does not represent parents at due process hearings. PLUK staff members are not attorneys and are not trained to represent parents in formal legal proceedings.

Parents who are considering due process are advised to contact the Montana Advocacy Program in Helena (1-800-245-4743). MAP is the organization in Montana that can assist parents with legal representation.

PLUK does keep a list of private attorneys who have in the past taken due process cases. Unfortunately, this list is rather short. Very few attorneys in Montana have training in education law and even fewer choose to represent parents.

Most school districts in Montana have insurance which covers the cost of engaging legal counsel. Because of the availability of this insurance, school districts can readily engage attorneys and not be so concerned about cost.

Q: I am a resource teacher in a small rural school. A new fourth-grader just came into my program. He has a medical diagnosis of Asperger's Disorder, and we have found him to be eligible for special education as a learning disabled student. There is a significant discrepancy between his potential and his reading comprehension scores. The LD label gets him into the program, but it isn't an exact fit. I am not sure how to help this boy because his behavior and his needs seem to be quite different from the "typical" LD student. Can you help?

A: Children with Asperger's Disorder can be puzzling because they often have quite advanced basic language skills, but they can have great difficulty with some learning and social tasks.

In general, students with Asperger's have unusual social styles, an unusual curiosity about their environment, self-stimulatory behaviors, and a preoccupation with sensory stimulation.

Students with Asperger's are generally high-functioning in terms of vocabulary and math skills, but have trouble making causal connections and understanding social mores.

Many are early readers, possessing excellent decoding skills and are highly verbal but lacking in reading comprehension.

Children with Asperger's disorder can be expected to have difficulty introducing themselves into groups of children or conversations, and they often have trouble gauging others' reactions to their own actions and speech. Recent brain research has shown that children with Asperger's disorder process the visual information they get on human facial expressions in a different part of the brain than children without the disorder. While typical children set aside a separate area of the brain for expressions, children with Asperger's use the part of the brain most of us use to process visual information on objects such as cars and furniture.

As they move through the early grades, these children tend to exhibit high levels of anxiety and are frequently on the verge of being upset about changes in their environments, such as scheduling changes or having to follow new directions. They tend to be very concrete and literal thinkers.

Other characteristics include a lack of organizational ability. Many students with Asperger's are good with patterns and structure that already exist, but become overwhelmed when forced to create their own structure or make connections. For example, the change from self-contained classes in elementary school to rotation of classes in middle school is often very difficult for students with Asperger's.

Children with Asperger's appear not to understand how interpersonal relationships work and can appear to be arrogant and egocentric. For example, when talking with a student who has Asperger's, he may use sophisticated vocabulary about his own interests, but he may not express interest in or show a logical response to what the other person is saying.

While students with Asperger's may be particularly proficient with facts, skills often need to be retaught, especially if the student needs to carry them from one activity to another.

With a student who has Asperger's, the emphasis in intervention should be on the following:

Structured social skills instruction. Students with Asperger's must be taught directly how to interact appropriately by using role plays involving mixed groups of children. Children with Asperger's benefit from opportunities to rehearse conversational skills and self advocacy techniques.

Prepare students for unstructured social situations. Students with Asperger's crave structure, but they can be helped to deal with unstructured situations by planning with them in advance the ways that they can cope. For example, on the playground a child with Asperger's may do better sitting at a picnic table and playing chess or checkers with one another child rather than engaging in a team sport or a pickup game without clear rules.

Use group activities as teaching moments. Whenever possible, involve students in group activities such as games, puzzles or cooperative learning projects. Assign specific roles to the student with Asperger's (e.g., recorder) and model how that role should be carried out. Help the student with specific interactions with other members of the group (e.g., "Explain to everyone how you think the map should be arranged").

Social stories. This approach is another technique for helping students with Asperger's to plan ahead or rehearse responses. Using this method, the students work through behavior by writing stories in a journal in anticipation of upcoming interactions or situations. They answer what-to-do questions or predict how the interaction will go.

Make connections between rules and consequences explicit and meaningful. Provide students with training or coaching in basic social rules. You also may need to help students make the connection between violating the rules and the consequences that are imposed.

Students with Asperger's may appear to be manipulative or obstinate when they are really having a problem with information processing. They simply do not see the connections between what they do and what happens next. For example, a student may refuse to participate in a dance activity in gym class because he would have to touch another student. The consequence for this behavior may be sitting out on the sidelines during the lesson. For the student with Asperger's "sitting out" is rewarding and does not teach any new skill. In this situation, it would be much more helpful to model how to engage in the dance activity and be comfortable in touching others.

Provide patterns for academic learning. Academically, students with Asperger's benefit from learning new material by using paradigms--a pattern for how the new concept works. They also benefit from support for organizational skills like visual schedules, assistance with planning how to do long-range assignments, breaking down assignments into manageable parts, assistance in organizing materials, and so forth. An outline is also helpful when the student is expected to listen to a lecture and take notes.

Parent Corner--Items of interest to parents

Breaking the Code

Breaking the Code: The Key to Reading is a helpful book for parents and teachers who are concerned about their children's reading level or those who want to make sure their children will learn to read successfully. The book explains normal development of literacy from infancy through third grade and describes problems that can occur in that development. Practical directions are given on how to prepare children for reading and how to strengthen their reading skills once they are in school. Parents, teachers, and children will love the 100 fun activities for teaching phonemic awareness and other -reading reproducibles, word lists, and a list of resources. The book is written by Karol Christena and Mary Ann Lynch, educators for over 20 years. Cost is $24.95 plus $4.00 postage. See ordering information below or contact the authors at yelrosel@aol.com for more information. Order from:

Karol Christena

1414 Charolais Drive

Austin TX 78758.

Parent Conference

The Second Annual Parents as Partners Conference will be held September 30 through October 2, 1998, at the Yogo Inn in Lewistown. Mark you calendars now and plan to attend!

New Center for Amputees

The Amputee Coalition of America has established the National Limb Loss Information Center in Knoxville, Tennessee. The Center is a one-of-a kind resource which provides much needed educational and rehabilitation information and support services to persons facing or who have experienced the loss of a limb.

Callers to the Center may request the following types of information from trained information specialists:

• Answers to questions regarding care options;
• Referrals to health care providers and rehabilitation professionals;
• Reference materials describing prosthetic technology; and
• Direction to local peer visitation training programs.

For more information, or to receive a free copy of the ACA's national publication In Motion, please contact the Amputee Coalition toll free at 888-AMP-KNOW (888-267-5669). This organization has a web site at: http://www.amputee-coalition.org.

Learning Weekend

The Montana School for the Deaf and Blind is offering from June 5-7, 1998, an opportunity for families and professionals to gather on the campus of MSDB in Great Falls and share information regarding the education of children who are deaf or hard of hearing. Topic areas include: IEP planning, technology, sex education, family needs, transition issues, and more. Participants are encouraged to bring children and siblings. Housing and meals will be provided. There is no cost for this service. For more information, contact MSDB at 1-800-882-6732.

Summer Camp for Deaf Children

On June 21-27, 1998, the Montana School for the Deaf and Blind is providing a summer camp for children who are deaf. A similar camp is offered July 26-August 1, 1998, for children who are blind. These camps target communication, social interaction, independent living skills, and use of technology for students between the ages of 9-14 (7 and 8 year-olds will be considered) for the Deaf Camp and 9-16 year olds with blindness or visual impairments. The week-long programs are provided at no cost to the student and include room, board and transportation. Transportation to and from the program is reimbursed at state rates.

Inclusion Guide

Including Your Child is a colorful, easy-to-read guide describing the role of the family, the importance of early intervention, key laws, educational funding and an extensive list of resources. The entire publication can be downloaded at no charge at the U.S. Department of Education's web site at:

http://www.ed.gov/pubs/parents/Including.

Partnerships at Work

A new book is now available about family/professional partnerships called Partnerships at Work: Lessons Learned from Programs and Practices of Families, Professionals and Communities. It can be purchased through the University of Vermont for only $10. The editors, Kathy Bishop and Polly Arango with Mary Skidmore Taylor, present a variety of real life stories and concrete examples of successful family/professional partnerships that inspire hope and provide a blueprint for action. To order, e-mail Partnerships for Change at the University of Vermont mweaver@zoo.uvm.edu.

Stand Up for Children

Stand for Children Day is June 1, 1998. This year the day will focus on affordable, quality child care for children in working families. More people will participate in the effort on-line by taking a Cyber-Stand for Children on Stand for Children's web site at http://www.stand.org. For more information, for Stand apparel and gifts, and for ways to Stand, visit their website.

Guide to Colleges for LD

K & W Guide to Colleges for the learning Disabled provides information to students, parents, and professional on over 300 colleges with programs of support for students with learning disabilities. Written by Marybeth Kravets, a college consultant, and Imy Wax, a psychotherapist, family counselor, and mother of a child with learning disabilities, the Guide includes an introduction by Anne Ford, Chairman of National Center on Learning Disabilities.

As a special offer to NCLD, Princeton Review (Random House, Inc.), the publisher, is offering the publication for the reduced price of $21.00, including shipping and handling. To purchase the guide at this discounted rate, call 1-800-733-3000 and mention code number 7705F.

Princeton Review is also donating $4.00 for every copy sold in the special offer to NCLD to support the work of the center.

Regional Conference on Improving America's Schools

On November 18-20, 1998, the U.S. Department of Education will be sponsoring a conference on improving public education in America. For information and a brochure, call 1-800-203-5494. To register, call 1-800-522-0772, ext. 2248. For resources from the 1997 IAS Conference, see:

http://www.ncbe.gwu.edu/iasconferences/1997.

Special Needs Store

kidAbility, a Chicago store for infants and children with special needs, offers a wide variety of products for preemies, plus clothing, toys, books, utensils and more--all adapted and or geared for children with needs. The store also has a resource center for families to use. In the center, there is information on equipment, alternative treatments, support groups, and specific disabilities. For more information, call Lisa at 800-333-8087. Or, visit their web site at http://www.kidability.com.

Learning Disabilities Book

The Learning Disabilities Sourcebook can help parents better understand learning disabilities, current diagnostic methods, and treatment approaches. The 600-page resource contains chapters on assessment, common disorders, legal and social information, and special information for older students and adults with learning disabilities. The book costs $75 and is available from:

Omnigraphics Inc.

Penobscot Building

Detroit, MI 48226

800-875-1340.

Help with SSI Benefits

SSI-Help for Children with Disabilities explains how children with severe mental and physical disabilities can qualify for federal benefits through the Supplemental Security Income program. The resource also contains information on appealing a denial of benefits. The book comes in English and Spanish versions and can be ordered by contacting the Publications Desk:

Bazelon Center for Mental Health Law

1101 15th St. N.W., Suite 1212

Washington DC 20005-5002

202-467-5730.

Curriculum-Based Measurement

The Montana Council of Administrators of Special Education (MCASE), the Montana Council for Exceptional Children (MCEC), and the Office of Public Instruction is sponsoring a two-day workshop on June 10-11 from 8:30-5:00 at the Clarion Hotel in Billings. This workshop will focus on Curriculum-Based Measurement and Its Use in a Problem-Solving Model. The presenter will be Mark R. Shinn, the director of the University of Oregon School Psychology Program and a recognized expert on CBM and its uses. The workshop will cost $75 per person. For more information, contact MCASE at 406-252-4022 (fax) or 406-259-2502.

Technology Conference

The Closing the Gap annual technology conference will take place October 22-24, 19988, in Minneapolis, Minnesota, at the Radisson South Hotel and Hotel Sofitel. For additional information, call 507-248-3294, e-mail info@closingthegap.com, or visit their web site at: http://www.closingthegap.com.

Outreach Services for Deaf and Blind

Did you know that the Montana School for the Deaf and Blind (MSDB) has three Outreach Consultants for the visually impaired, and one outreach consultant who serves deaf and hard of hearing children. Outreach services include providing information on sensory losses and their implications, recommending special aids and learning materials when appropriate, offering suggestions and sources of information to teachers, parents, and family support specialists, and assisting in the development of Individualized Education Programs (IEPs). There is no charge for these services. For more information, call MSDB at 1-800-882-6732.

Assistance for Advocates

Advocates Across America is a nonprofit organization that has produced a set of six audio tapes designed to teach parents and advocates how to get what is due for children with any special need, including ADHD and ADD, learning problems and any physical or mental or emotional disability. The organization is supported through the tax deductible donations from generous individuals and corporations and through the sale of advocacy training tapes. For more information, contact:

Advocates Across America

P.O. Box 754

Chandler AZ 85244-0754

http://www.axa.org.

ADHD Documentation Guidelines

If parents are seeking special education or school accommodation for their children with ADD or ADHD, they must have adequate and convincing documentation of the condition. It is particularly important that there be documentation of how significantly the ADD impacts the child's learning ability.

The Consortium on ADHD Documentation has recently published Guidelines for Documentation of Attention-Deficit/Hyperactivity Disorder in Adolescents and Adults. According to the consortium, the guidelines are meant to offer a "common understanding and knowledge base of the components of documentation which are necessary to validate the existence of ADHD, its impact on the individual's educational performance, and the need for accommodations."

The guidelines fall into the following four areas:

1. Qualifications of the Evaluator

Professionals conducting assessments and rendering diagnoses must have training in differential diagnosis and the full range of psychiatric disorders. The following professionals would generally be considered qualified to evaluate and diagnose ADHD provided they have comprehensive training and experience in the differential diagnosis of ADHD and direct experience with the adolescent or adult ADHD population: clinical psychologists, neuropsychologists, psychiatrists, and other relevantly trained medical doctors (e.g., family practice, internists, pediatricians, neurologists).

The name, title and professional credentials of the evaluator, including information about license or certification as well as the area of specialization in which the individual practices should be clearly stated in the documentation.

2. How Recent Is the of Documentation

Because the provision of all reasonable accommodations and services is based upon the assessment of the current impact of the disability on academic performance, it is important that the individual or the child's parents provide recent and appropriate documentation. In most cases, this means that a diagnostic evaluation has been completed within the past three years.

3. Comprehensiveness of the Documentation to Substantiate ADHD

The documentation should include evidence of early childhood and current impairment. The diagnostic interview should include:

• History of inattentive symptoms, including evidence of ongoing impulsive/hyperactive or inattentive behavior that significantly impairs function over time;
• Developmental history;
• Family history for presence of ADHD and other educational, learning, physical, or psychological difficulties;
• Relevant medical and medication history, including the absence of a medical basis (other than ADD) for the symptoms;
• Relevant psychological history and any interventions;
• A thorough academic history of elementary, secondary and postsecondary education;
• Review of prior psychoeducational test reports to determine whether a pattern of strengths or weaknesses is supportive of attention or learning problems;
• Employment history, if relevant;
• Description of current functional limitations pertaining to an education setting that are presumably a direct result of problems with attention; and
• Relevant history of prior therapy.

4. Rationale and Evidence for Need for Accommodations

A detailed explanation should be provided as to why each accommodation is recommended and should be correlated with specific functional limitations determined through interview, observation or testing.

To receive a full copy of the guidelines, e-mail consortium Chairman Loring Brinckerhoff at lbrinckerhoff@ets.org.

ADHD and HKD: United States and Europe Come Closer to Agreement

In a combined scientific paper experts from the United States, the Netherlands, and Great Britain have come to agreement over the diagnosis of attention deficit disorder with hyperactivity and its treatment. For a long time Europeans and others have looked askance at the huge numbers of children in the United States who have been given a diagnosis of ADHD and who have been treated with medication.

Recently, however, a group of three European and three American medical experts have combined heir views of the disorder and agreed upon general guidelines for diagnosis and management of ADHD and HKD (Hyperkinetic Disorder). The authors stress the importance of making the diagnosis by direct observation of a child in the classroom and in the home. They feel that the diagnosis should be provisional in children under the age of 5 years.

There are two primary modalities of treatment of ADHD and HKD: (1) treatment with stimulant medications; and (2) behavioral. In Europe where the prescription of stimulants has been restricted by custom and law, an initial rigorous trial of such interventions as behavior modification, cognitive therapy, family therapy, and teacher consultation is required. In North America, where the prescription of stimulants has been accepted for decades, clinical guidelines recommend an initial pharmacological trial with such drugs as Ritalin or Dexedrine. These drugs release and inhibit the uptake of dopamine in the central nervous system. The drugs reduce the symptoms of ADHD in about 80% of individuals. The international panel has agreed that it is appropriate to try an initial therapy of 5 to 20 mg two to three times a day of Ritalin. The combination of medication and psychosocial treatments may prove even more beneficial, but studies of the combinations are only just beginning.

Source: Swanson, J; et al. (Feb. 7, 1998). Attention Deficit Hyperactivity Disorder (ADHD) and Hyperkinetic Disorder (HKD)--United States and Europe come closer to agreement. Lancet 351, 429-433.

ADHD May Precede Bipolar Disorder

In many individuals diagnosed with mixed bipolar illness during adolescence, a characteristic history can be traced back to attention-deficit hyperactivity disorder beginning in early childhood.

It is not yet known just how frequently this occurs, but preliminary research by Dr. Joseph Biederman, who initially identified this pattern, suggests that between one-fifth and one-fourth of children with attention-deficit hyperactivity disorder (ADHD) have bipolar disorder or go on to develop it.

If 3%-6% of boys have ADHD, as is commonly thought, then as many as 1% of boys may actually have the beginning symptoms of bipolar disorder.

Mixed bipolar disorder often begins with children 3-4 years old. They are usually the ones who present with the most severe form of ADHD. At 5 or 6, these children continue to meet all the criteria for ADHD and are considered to be very oppositional. They may be diagnosed with oppositional defiant disorder.

When these children are 6 or 7 years old, they may begin to display symptoms of depression. They have not had many positive experiences with peers or teachers. They are often irritable and anxious. They may have generalized anxiety disorder or separation anxiety disorder, and they do not want to go to school.

By the time they reach 8-10 years old, these children have not learned the social rules that their peers have learned. Some are a lot more rigid than their peers.

When these children reach puberty, the bipolar nature of their illness becomes more apparent.

Like other teenagers, they are irritable and fail to listen. But, notably, they also develop mixed states of affective function; some may be crying and perhaps feeling elated at the same time. The next moment they may be in a rage and destructive of property. They cycle rapidly.

About 60% of adolescents with mixed-states bipolar disorder develop substance abuse problems. They want to feel good and be with friends.

It is often difficult to say whether it is the affective disorder or the drug abuse that causes moodiness and aggressive behavior, leading youth to miss school and destroy their personal relationships. Usually, it is a combination of drug abuse and illness that causes these behaviors.

Source: Baker, B. (April 1998). Severe ADHD may precede mixed bipolar disorder. Pediatric News, p. 26.

Language Disorders a Factor in ADHD, OD and Conduct Disorder

Language and auditory processing disorders are estimated to be present in 40% or more of children and adolescents with ADHD, oppositional defiant disorder, and conduct disorder.

Youths with these disorders often have run-ins with the adult authority figures and the law; an accompanying language or auditory processing disorder can leave them incompetent to comprehend discipline or legal proceedings, according to Dr. Dawn R. Dawson, a psychiatrist at the University of Colorado in Denver. Thus, the presence of a language disorder can compound the difficulties a child has who also has a behavior problem.

Because of the high potential for having a language disorder, when a child is diagnosed with ADHD, oppositional defiant disorder, or conduct disorder, the child should also be screened for an auditory-language processing problems. A hearing and language screen typically takes 15-30 minutes and costs from $30 to $70. If a child has a language processing disorder, it can be treated through speech/language therapy and such treatment may be very helpful in preventing the child from getting into trouble due to misunderstanding directions or explanations from adults.

Source: Jancin, B. (March 1998). Language disorders common in psychiatric youths. Rocky Mountain News Bureau, p. 20.

Genes Play Big Role in Mental Disorders

Increasing evidence points to genes being responsible for a substantial portion of behavioral traits and psychiatric disorders in childhood.

Twin and adoption studies now indicate that genes are responsible for about half the instances of attention-deficit hyperactivity disorder, obsessive-compulsive disorder, reading disability, autism, and Tourette's syndrome.

Specific behavioral and psychiatric disorder genes have not yet been identified as they have been for a host of medical diseases. But their discovery is predicted to occur within the decade.

Because some behavioral and psychiatric disorders have a genetic component, it is important when diagnosing a child with a serious behavior problem to take a careful family history and determine if the behavioral characteristics noted in the child have been present in any other family members.

Knowing that genetics is partially the cause of behavioral characteristics does not mean that a child is destined to continue behaving in a certain way, and just because a trait or a diagnosis has a significant genetic component does not mean it cannot be treated.

If a parent and a child have the same disorder the common bond can be used to foster family understanding and empathy. The affected parent can often be a role model of adult adaptation and success for the child.

Bipolar Illness Must Be Treated Aggressively

It used to be that psychiatrists believed that adolescents with symptoms of bipolar illness need not be treated as aggressively as adults. The evidence is, however, that bipolar illness should be treated aggressively whenever it is diagnosed because of the potential for extreme dysfunction or suicidal tendencies.

A family history of bipolar illness is highly predictive of the disorder occurring in an adolescent. Interestingly, a sudden drop in math scores while other grades remain the same is sometimes an indicator of the onset of bipolar illness in an adolescent.

The average of age of onset of a first manic episode is 16.5 years, but the onset of depressive symptoms may occur earlier, on average at 14.5 years.

For treatment of mania, lithium is usually chosen. Divalproate may be preferable in adolescents, however, because it causes less acne than lithium.

The same serum levels of lithium that are used in adults can help control the extremely rapid cycling and psychotic symptoms that many bipolar adolescents experience.

Long-term treatment with medication should continue for one year after one manic episode.

A second manic episode means lifetime medication maintenance.

Medications must be combined with symptom education and life charting. These are key in identifying symptoms and the times when intervention may be necessary.

Source: Zwillich, T. (March 1998). Hit adolescent bipolar illness early and hard. Pediatric News, p. 21.

Model Mental Health Project

For individuals with chronic mental illnesses, one of their greatest difficulties is managing medication on a daily basis. When the mental illness "cycles" and causes thought disorders, it is hard for people to remember proper procedures for administering medication, and this becomes one of the more significant barriers to living independently.

The Wilkinson Semi-Independent Apartment Program aims to break down these barriers by helping individuals who have mental illnesses make the transition from hospitalization or institutional living into fully independent living.

Recently the program received a $15,000 grant from the Metropolitan Life Foundation's Award for Excellence in Affordable Housing.

The goal of the project is to try to assist residents to live independently, stabilize their medication, and maximize their potential as contributing members of the community.

There are few programs like Wilkinson which fill the gap between full-time support and independent living. At Wilkinson, there is a full-time staff of six which supervises the progress of residents rather than providing full-service support.

Often the first challenge that residents face is relearning simple, daily living tasks that were once easy for them. The staff checks on them two to three times a week to make sure they vacuum, clean the refrigerator, mop the kitchen floor, do laundry, and change bedding. As residents become proficient in daily living tasks on their own, the checks become less frequent.

Key among all of Wilkinson's living plans is the administration of medication. When residents first arrive, the staff reminds them when to take medications and how much to take. As time progresses, residents remember on their own and administer their own medication.

Once an individual is able to be consistent in taking medication, they can apply to use "splits." Splits are boxes which divide medication into morning, afternoon and evening dosages. As residents progress, the splits contain more than one day's worth of medication. Eventually residents can refill the splits by themselves and become responsible for a week's worth of dosages.

Residents also receive a weekly allowance totaling $226 per month. They must budget the money for groceries and other items.

Sixteen residents can stay at the facility at any one time. Wilkinson contains four single units and six double units.

Other support programs at the apartments include: discussion groups, one-on-one therapy, cooking and nutrition classes, exercise clinics and social activities.

A full-time therapist is on staff and runs the discussion group and individual therapy. Residents are encouraged to join, but it is not mandatory.

Other Wilkinson areas of assistance include a community support worker who teaches residents about getting around town. This includes lessons on use of public transportation.

Also, an on-site staff advisor meets with residents weekly. The advisors make sure the residents keep in touch with their extended goals and weekly goals for independence.

After 12-16 months, the residents graduate. Some advance to Wilkinson's sister program of independent living apartments and others simply head out on their own.

When graduation comes, Wilkinson residents are prepared to cook for themselves, take medication, meet appointments, use public transportation, manage an apartment, and budget for groceries and other daily necessities. In the process, they have learned how to manage a mental illness that comes and goes and causes symptoms to wax and wane.

Burrell Behavior Health runs the Wilkinson program and others like it. Burrell is a private, nonprofit division of the Cox Health Systems, a hospital conglomerate.

The Wilkinson program receives its funds from contracts with the Missouri Department of Mental Health's Division of Comprehensive Psychiatric Services.

The original construction costs for Wilkinson were paid for by tax credits and a cooperative agreement with five local banks.

The Met Life grant is being used for a client emergency fund to assist with making housing deposits, purchasing furniture and household items, and paying for medication for residents. For more information, contact Teresa Brandon at 417-831-7111 or Polly Vandenburg at 417-269-7337.

Part of Brain Function Impaired in Dyslexia

Imaging techniques that detect the brain's inner workings show for the first time that a part critical to reading has an impaired function in people with dyslexia.

Dr. Sally Shaywitz, A Yale University School of Medicine researcher, describes the problem as "a glitch in the circuitry for reading" that makes it more difficult for dyslexics to link printed letters and words instinctively with the language sounds the letters and words represent.

Such linkage is essential for learning to read and is accomplished routinely in people with a normal connection between parts of the brain that control language and vision.

To identify the brain circuitry problem, Shaywitz and her colleagues used a technique called functional magnetic resonance imaging. This technology allows researchers to observe which parts of a subject's brain are active when a specific function is performed.

The researchers used the MRI technique on 29 dyslexic readers and 32 normal readers. All of the study participants were all required to read a list of nonsense words that would rhyme if the reader could correctly link the letters with the language sounds that they symbolize.

There are 44 letter sounds in the English language. They are represented by 26 letters in the alphabet, either singly or in combination. To read, a persons' brain must convert the printed letters into the sounds they represent.

In the functional MRI tests, Shaywitz's team noted that normal readers showed activity in both the portion of the forebrain that processes visual information, and in the back of the brain that contains the language center. Normal readers had no trouble interpreting the rhyming symbols and sounds.

For dyslexics, however, there was reduced activity in the language center at the back of the brain and increased activity in a part of the brain linked to the spoken word. Participants with dyslexia were much less able to link the rhyming letters and sounds.

Shaywitz's MRI study provides physical evidence for one of the major problems dyslexics have in learning to read: individually identifying the 44 letter sounds in the English language and linking those sounds to their alphabetical symbols.

Recordings of Books Available for Print Impaired

Recording for the Blind and Dyslexic's (RFB & D) services are available to anyone with a documented print disability which includes learning disabilities. RFB & D serves students at all academic levels, as well as people who use educational and professional materials to pursue careers or personal interests.

To become a member of RFB & D, send your application for service and include $75 ($50 registration fee plus $25 annual membership fee). The application form is available from the Customer Services Department at 800-221-4792. It can also be downloaded from RFB & D's web page at http://www.rfbd.org/forms/apply.frm.

The application form includes disability verification and certification sections which should be completed by a professional in disability services, education, medicine, psychology, or a related field. The certifying professional may be any professional in these fields who is familiar with print disabilities. To complete an application for a student with learning disabilities, a special education teacher may use the results of testing given by the school psychologist.

RFB & D's recorded books require special equipment--a cassette machine that will play 1 15/16 ips (inches per second) 4-track cassettes. This is NOT the standard speed and format of cassette players sold in retail stores. It is, however, the same speed and format used to produce the Library of Congress Talking Books. Therm if you receive services from a cooperating network library for the blind and physically handicapped, you may already have a compatible cassette machine on loan from your library. If not, you may purchase one from RFB & D or you may call the PLUK office for other sources.

RFB & D's catalog is available in three formats: on audiocassette, on computer disk, and in print. For audiocassette listings, the Quarterly Recorded Catalog (QRC) is available by subscription for $16 per year and lists 500-1000 titles per issue. The Quarterly Disk Catalog (QDC) is also available by subscription for $16 per year and is produced on IBM 3.5" and 5.25" disks, as well as Macintosh 3.5" disks.

The RFB & D Catalog of Books gives a listing of RFB & D's entire library of books on audio cassette and computer disk (E-Text).

To subscribe to the QRC or QDC to purchase the print catalog, or for additional information on any of these, call Customer Service at 800-221-4792.

Once membership has been established, request for recorded books may be placed by mail to Customer Service, 20 Roszel Road, Princeton NJ 08540. For more immediate requests, taped books may be ordered by telephone at 800-221-4792 and 609-987-8116. RFB & D also offers an after-hours service which is in operation from 9 p.m. to 9 a.m. Monday through Friday and continuously on weekends.

RFB & D's taped books are provided on free loan for one year and, if needed, the time may be extended by calling Customer Service. When RFB & D's audiocassette library does not have a book you need, you have the option of requesting that it be recorded for you. There is no charge for the recording service; you are simply asked to provide two identical print copies of the book and the recording will be done as soon as possible.

Individuals with learning disabilities may also wish to qualify for the Montana Talking Book Library and obtain the cassette players on loan (1-800-332-3400). Once this is completed, apply for membership ($75.00) to Recordings for the Blind and & Dyslexic to receive free taped materials. This is the least expensive way to receive this service. If application is made directly to Recording for the Blind and Dyslexic, there is a charge for the cassette players, ranging from $119 to $219 plus shipping.

For more information about RFB & D, visit their website at http://www.rfbd.org.

Scholarships Available

Recording the Blind and Dyslexic (RFB & D) sponsors two academic scholarship programs for its members each year. The awards recognize extraordinary leadership, scholarship, enterprise, and service to others.

Scholarships for Students with Visual Impairments. The Mary P. Oenslager Scholastic Achievement Awards (SAAs) are given to legally blind college students. The SAA Awards are given to nine students in three categories--three winners receive $6,000 each, three Special Honors winners receive $3,000 each, and three Honors winners receive $1,000.

Scholarships for Students with Learning Disabilities. The Marion Huber Learning Through Listening (LTL) Awards are presented each year to high school seniors who have specific learning disabilities and plan to continue formal education beyond high school. The LTL Awards are given to a total of six students in two categories. Three winners receive $6,000 each and three Special Honors winners receive $2,000 each.

For more information on RFB & D scholarship programs and the awards criteria, call 1-800-221-4792. Applications for the 1999 awards will be available in the fall of 1998.

Genetic Testing Could Lead to Problems

Researchers are making an incredible number of breakthroughs in determining which genes may be involved in the transmission of a variety of birth defects and diseases. Potentially, the identification of these genes may lead to methods of prevention and treatment, but there is a potential downside to the availability of all this new genetic information.

In this era of managed health care, it could be that health care providers and insurance companies might use genetic information to exclude individuals from managed care plans who have genes for transmitting genetic diseases. The Epilepsy Foundation and other national disability groups are beginning to sound the alarm and cautioned people to be very careful how genetic information about them is being used. The Epilepsy Foundation, for example, is opposing genetic testing by employers or the discriminatory use of genetic information by insurance companies. In a report delivered to Vice President Al Gore, the Genome Action Coalition stresses that employers should not require or request genetic testing and genetic information should not be used to discriminate against, limit, segregate or classify employees or potential employees.

Gore has announced the administration's support for federal legislation prohibiting discrimination in the workplace based on the results of genetic tests.

Public Telephones and Access

If there is a public pay telephone provided in a stadium, arena, convention center, hotel or covered mall, at least one interior public text telephone must also be provided in that facility.

If there are four or more public pay telephones provided at a site, and at least one is in an interior location, then at least one interior public text phone must be provided.

If there is a bank of telephones in the interior of a building consisting of three or more public pay telephones, at least one public pay telephone in each bank must be equipped with a shelf and outlet designed to accommodate a portable text telephone.

Equivalent service may be substitute for this requirements. For example, a portable text telephone may be made available at a hotel registration desk on a 24-hour basis for use with a nearby public pay telephone which is equipped with appropriate height shelf, outlet and appropriate length phone cord.

These ADA public laws apply to all new construction since 1992. If you would like more information on public telephone access, contact the ADA Technical Assistance Center at 1-800-949-4232.

Guidelines on Neurofibromatosis

Neurofibromatosis is a disfiguring and sometimes fatal disorder which is more common than cystic fibrosis and muscular dystrophy combined. Its genetic origins have been pinpointed. Yet neurofibromatosis is often overlooked by physicians. In many cases, this inherited disease is not diagnosed until the individual is an adult--who already may have unknowingly passed the defective gene on to offspring.

Frustrated that the early signs of neurofibromatosis are too often missed, an expert panel headed by Dr. David H. Gutmann developed guidelines for physicians to use in diagnosing the disease.

In the past decade, rapid gains have been made in understanding the origins and physiology of the two forms of neurofibromatosis 1 and 2 (NF1 and NF2). The genes for NF1 and NF2 have been cloned and their protein products have been identified. Yet many physicians still fail to recognize the diverse manifestations of the disease, including cafe-au lait spots, skinfold freckling, malignant and benign tumors, skeletal abnormalities and vision problems.

Diagnosis of NF1

This form of the disease affects 1 in 3,500 people. Diagnosis is based on the presence of two or more of the following:

• Six or more cafe-au-lait spots over 5 mm in children and over 15 mm after puberty;
• Two or more neurofibromas of any type or one plexiform neurofibroma;
• Freckling in axillary or inguinal regions (e.g., folds at the elbow, under the arm);
• Optic pathway tumor;
• Two or more Lisch nodules (Note: Lisch nodules are harmless clumps of pigment on the iris of the eye. The nodules, which are sometimes called iris nevi, do not affect vision.)
• Thinning of the long bones;
• A relative with NF1.

Also, 50% of individuals with NF1 have learning disabilities, making early diagnosis of the disease and intervention even more crucial

Diagnosis of NF2

This form of the disease affects 1 in 35,000 people and has two separate paths to diagnosis:

• Bilateral vestibular schwannomas that are visualized on magnetic resonance imagining;
• Family history of NF2 in a parent, sibling, or child, plus unilateral vestibular schwannomas before age 30, or any two of the following: meningioma, glioma, schwannoma, or juvenile posterior subcapsular lenticular opacities (juvenile cortical cataract).

Individuals with NF2 often have hearing loss and cataract formation. These can develop during childhood, but are most common during the teen age years or in the early twenties.

Treatment

Treatment of individuals with neurofibromatosis, at this point, can provide no cure, but is effective in curbing symptoms. More than 80 clinics nationwide specialize in treating individuals with NF1 and NF2. Call the National Neurofibromatosis Foundation at 800-323-7938 to locate a clinic where individuals with suspected neurofibromatosis can be referred.

Treatment for neurofibromatosis usually involves surgical removal of problematic tumors or, in the case of optic tumors, chemotherapy.

Possible NF1 Manifestations at Different Life Stages

Congenital

Cafe-au-lait spots. Can occur at any time from birth to age 2.

Plexiform neurofibromas. In the first year of life, these may present as a subtle soft-tissue enlargement or a large path of hyperpigmentation.

Tibial dysplasia with anterolateral bowing of the lower leg. Should be referred to an orthopedic surgeon who is familiar with NF1.

Preschool

Skinfold freckling. May appear between ages 3 and 5.

Optic pathway gliomas. Peak incidence is between ages 4 and 6. Annual vision screening should detect these lesions and make visual loss rare.

Two or more Lisch nodules. Occurs in half of individuals by age 5.

Learning disabilities. This common feature of NF1 requires early intervention

Attention Deficit Disorder. Stimulant medication may be beneficial.

High blood pressure. Usually associated with renal artery stenosis, but in rare cases may result from peochromocytomas.

Plexiform neurofibromas. Tend to be difficult to remove, and may regrow. Surgical treatment follow-up requires a multidisciplinary team that includes surgeons, radiologists, and oncologists.

Migraine headaches. May be accompanied by nausea and abdominal pain. Exclude other underlying causes. Standard migraine treatment often helps.

Childhood, Adolescence

Dermal neurofibromas. Tend to appear first in late childhood.

Scoliosis. Can occur in late childhood or adolescence. Spinal fusion may be necessary.

Lifelong

Dermal neurofibromas. It is impossible to predict the location of lesions or the number that will develop. Some may be surgically removable.

Hypertension. In adults, this usually essential hypertension. Persistent hypertension or signs of pheochromocytoma merit further evaluation.

Malignant peripheral nerve sheath tumors. These can arise from preexisting plexiform neurofibromas. Rapid growth or de novo pain should prompt immediate evaluation. People with NF1 have 5% lifetime risk of this malignancy.

Defective Gene Causes Disorders

Researchers at Beth Israel Deaconess Medical Center have identified a gene that, when defective, can result in malformation of the cerebral cortex and produce serious neurological conditions including epilepsy, mental retardation and cerebral palsy.

The gene, doublecortin, is essential for normal brain development. It guides the migration of fetal nerve cells from the inside of the brain to the outside.

When it is defective, the journey of these neurons is cut short and the formation of the cerebral cortex is disrupted.

The researchers found the gene by studying families who had abnormal brain development and epilepsy.

The next step for the research team is to determine how many people with epilepsy carry this particular gene and to understand the role of the protein made by these genes and how abnormalities in the protein lead to epilepsy.

Researchers are suggesting that the protein is probably part of a guidance system for the migration of neurons through the brain and that for individuals who possess the genetic abnormality, this all-important system does not work properly.

Source: Walsh, C. (January 9, 1998). Cell.

Woman with Down Syndrome Writes Poetry

Written over the course of several decades, the poems contained in the book Bus Girl are thought-provoking and often humorous. The author, Gretchen Josephson, was born with Down Syndrome (DS) and the poems convey her passage from youth to adulthood.

Gretchen's development is clearly revealed as she matures from parental dependence toward independence and adult relationships--through romance and marriage. A self-taught poet, Ms. Josephson's voice is both direct and honest, and at times cutting.

Her experiences working in the Denver Dry Goods retail store as a bus-girl in the tea room form the core of this book. This is her sense of belonging and fitting into a world where she found purpose and success. When the store closes and Josephson loses her job, it becomes immediately apparent how a sense of purpose and achievement is critical to us all.

Interspersed throughout the text are short riffs about country music, seaside and camping resorts, family holidays and relatives. Bus Girl provides a clear-eyed view of what it is to see the world through the lens of a perceptive young woman who, despite her disability, is determined not only to be heard, but ultimately to prevail.

Edited by Lula O. Lubchenco with the assistance of Allen C. Crocker, Bus Girl is published by Brookline Books. It is available for $14.95 and may be ordered directly fro:

Brookline Books

29 Ware St.

P.O. Box 1047

Cambridge MA 02238

617-868-0360

617-868-1772 (fax).

Summer Fun for Everyone!

Making the most out of summer vacation is a challenge for all parents. The cry of "What shall I do now?" is frequently heard, especially in families with a special needs child. Keeping easily bored children occupied and amused when school is not in session can tax even the most inventive parent. Ideally, summertime is a relaxed and beneficial period when children have more time to explore, experiment and grow mentally and physically. The following are some suggestions for keeping cool and having a happy summer with all of your children.

Summer Play

There are so many more opportunities to explore and experiment with toys and different substances&emdash;water and sand in the backyard, outdoor recreational equipment, yard toys. Since most children with special needs require constant reinforcement of what they have learned all year long, play is the perfect way to "work" over the summer, not only to maintain skills but also to learn new concepts in a subtle, fun way. Here are some hints to consider.

• Talk to your child's teacher before school is out and ask for two or three skills that the teacher feels your child should practice over the summer. If you don't understand what the teacher means, ask for a demonstration of the skills and the ways that the teacher would teach them. Also ask the teacher for suggestions of "fun" ways to practice the skills.
• Inspect your yard or the park areas which may be available to your child. Determine what opportunities there might be for playing with water, sand, soap bubbles, natural materials like pine cones, pebbles, feathers. Plan specific times for play with these special materials. The fun thing about summer is that a child can get dirty and be "hosed off" quickly.
• Arrange for a local teenager to baby-sit your child with special needs two or three times per week. Plan for these times to include special activities like walks to the park, trips to the library, finger painting sessions.
• Invite a small group of children your child's age to join you in the backyard to do a specific activity like making a combined mural, mixing up a batch of no-bake cookies, listening to a story and having a snack. Be sure to keep the group small and manageable. Hint strongly to the other parents that your child would appreciate a similar invitation to their homes.

Computer Fun

Computers provide wonderful opportunities for children to play and learn at the same time. If you do not have a computer at home, investigate to see if your school system, YMCA, library, local college or vocational school has opportunities for children to use computers in the summer. Here are some ways that computers can be helpful to children with special learning needs:

• Children who have difficulty paying attention to school work are often highly motivated by using the computer. It seems to hold the attention of even the most distractible child.
• Children who have difficulty relating to others find quiet work at the computer to be a less stressful way to learn. Figuring out how a program works can be a good way for a parent and child or a group of several children to interact.
• The stimulating visuals, interesting sounds and opportunity to touch the computer keyboard or joystick keep the child alert and interested.
• Many children have poor handwriting skills or struggle to use a pencil or crayon. Learning to type and illustrate their thoughts and feelings on the computer helps them to succeed in an area that has always been a source of frustration for them.

Reading Together

For many children, reading is a difficult school task. In the summer, however, reading can be part of the fun rather than a dreaded chore. The trick is to eliminate the pressure for performance and allow the child a great deal of choice in what he or she is reading. Incorporating books of all kinds into activities which the child enjoys will make reading more interesting and more enticing to the child.

• Choose a read aloud story that is appropriate for your child's age. Ask your children's librarian at the local library for suggestions. Set aside a time each day for reading a portion of the book together. Keep the reading aloud sessions short. Always quit when the child is ready to be finished.
• Encourage your child to read anything he or she is interested in, including comic books, magazines, picture books. Don't worry too much about whether the reading materials are educational or appropriately challenging. Just encourage the reading itself.
• Set aside a time when everyone in the family reads silently. It is great for your child to see you reading, too.
• Help your child to fill out a subscription for a children's magazine that will come to him or her during the summer months.
• If your child has a special teacher, favorite relative, or adult friend, see if that person would be willing to be a summer pen pal. Help your child write letters and draw pictures for that person. Read aloud the letters that come from the adult pen pal.
• Many books are on tape cassettes. Buy a few taped books or borrow some from the library. The ability to follow the story on tape while looking at the book sharpens listening skills&emdash;a very important factor in academic success.
• Help your child to make a book. Write down a story as the child dictates it. Encourage him or her to illustrate the story. Make a special cover for the book. Have your child read the book to someone else.

Schedule or No Schedule

The trick to making summer fun for a child with special needs is to provide just enough structure so that there is something to look forward to each day. There should be a balance between active and quiet activities and plenty of flexibility to change plans. If your child is spending summer days in a daycare situation, talk to the daycare providers about the summer schedule. See if there are things that you could be doing at home that would complement the daycare routine and be special family activities as well. Some children become very tired after a hot day with lots of other children. The evenings are, then, better spent in quiet, soothing activities without the stimulation of other children.

The real key to a happy summer for a child with special needs is to plan ahead a bit and think through how the vacation days will be spent. With some advance planning, summer days can be truly fun for all of the family.

Summer Activity Updates

Camp for the Deaf

July 26 through August 2--Camp Mivoden has a camp near Coeur d'Alene, Idaho that has the following activities: water skiing, wind surfing, paddleboats, canoeing, catamaran, skin diving, horsemanship, archery, BMX biking, rappelling, photography, ceramics, and much more. Cost is $220.00 for the week. Transportation is available from Billings, Bozeman, Butte, and Missoula for $35.00 round trip. For an application and more information contact: 509 838-2761 until June 12. After June 12 contact: 208 772-3484.

Helena Riding Academy

The number for the theraputic riding academy in Helena has been changed to: 406/447-6101.

Parents' Essays Wanted

Stan Klein and Kim Schive are writing a book and know that experienced, "veteran" parents of a child with a disability and/or special health care need are the most important source of emotional support and wisdom for new parents of children with disabilities and/or special health care needs.

The book is intended for parents who have recently learned that their child has a disability and/or special health care need--at birth, during early childhood or any time thereafter. This is a time when most parents will not feel able to listen to or read large amounts of information. Rather, it is a time for family and friends to be there, to listen and assure these parents of their continuing support. That is why they decided to create a book of short essays by experienced parents, essays that can be read, re-read and shared with others -- one at a time, at any time, and in any order.

What do you wish a friend had told you at that time in your life? What information do you wish someone had given you? What type of personal stories do you wish veteran parents had shared with you? Write this essay in your own way.

Keep essays to about 1500 words or less. Send them to: 82 Evans Road, Brookline, MA 02146-2118.

End of the PLUK NEWS April/May 1998

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