A SCHOOL'S GUIDE FOR STUDENTS WITH
CHRONIC FATIGUE SYNDROME
WHAT DOES THE SCHOOL NEED TO KNOW ABOUT THE HEALTH IMPAIRMENT IN CFS? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1. According to the Centers for Disease Control and Prevention, Chronic Fatigue Syndrome (CFS) "is a recently defined illness that is characterized by debilitating fatigue and a group of other related symptoms, including headache, sore throat, fever, weakness, lymph node pain, muscle and joint pains, memory loss, and difficulty in concentrating. By definition, the illness lasts at least six months and often for years."

2. CFS researchers have demonstrated that the physical/cognitive symptoms may affect the learning process. This impact on education depends on the severity of the illness and the time lost from school. Some children may require a half-day program or a home instruction program.

3. Children with CFS may be perceived as: lazy, school phobic, emotionally disturbed or unmotivated.

4. Children with CFS may experience a loss of self-esteem, academic failure, social isolation and resulting emotional distress and depression.

5. Children with CFS who are not achieving to their pre-illness state have the right to special education support services so that they may participate on an equal basis with their peers. They have the right to reach their full potential!

HOW CAN THE SCHOOL ASSURE CFS STUDENTS' ACADEMIC SUCCESS? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1. School is central to a child's development. School provides the environment that teaches children to be confident, productive members of society.

2. Don't assume that a regular education program is providing the best or the most appropriate educational program for CFS children.

3. Encourage parents to become active participants in the development, implementation and evaluation of their child's educational program.

4. Notify the parents of their child's educational rights.

5. Conduct a special education evaluation to define the strengths, weaknesses and learning style of the CFS child.

HOW DOES "THE EDUCATION OF ALL HANDICAPPED ACT" APPLY TO CFS? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1. Public Law 94-142 (The Education of All Handicapped Act) mandates a free, appropriate public education for all children with disabilities, assures due process rights, and mandates education in the least restrictive environment possible.

2. Children with CFS may fall under the handicapping classification of "OTHER HEALTH IMPAIRED." The characteristics of an "OTHER HEALTH IMPAIRED" child are one who has "...limited strength, vitality or alertness, due to a chronic...health problem...which adversely affects a child's performance." The Committee on Special Education should do an evaluation to determine if the classification of "OTHER HEALTH IMPAIRED" is appropriate.

3. The special education evaluation is conducted by a multi-disciplinary team that may consist of specialists in the areas of: psychology, special education, medicine, physical/occupational therapy and others. The assesment should include: a physical exam, an individual psychological evaluation, a social history, an observation in the classroom/home, and appropriate educational assesment to determine strengths, weaknesses and learning style.

4. Researchers have been studying the cognitive dysfunction in CFS and looking for rehabilitation techniques. The have used many different assessment tools including the Wechsler Intelligence Scale for Children (WISC-R) to measure the problems with: memory and comprehension (remembering what has been read/said), word blocking, word transposition (putting the wrong word in), directional and spatial problems, acalulia (inability to do simple mathematical calculations), anomia (inability to match names and faces), dyslexic- type problems (letter reversals), inability to remain on task, fine/gross motor problems (difficulty walking or holding onto a pen), etc. An educational evaluation including the WISC-R should identify the cognitive problems and assist in remediation techniques.

5. The physical symptoms of headache, fatigue, sore throat, abdominal problems, dizziness, weakness, muscle/joint pains, lymph pain, eye pain, etc., will fluctuate in severity and at times the child may appear to be healthy. This presents the greatest challenge to educators. Academic and physical ability changes from week to week, sometimes hour to hour. The school must allow great flexibility in programming and scheduling to maximize the potential for success.

6. If the CFS child is found to be classified "OTHER HEALTH IMPAIRED," a special education program should be provided in the least restrictive environment possible. I feel that most CFS students' needs can be met in the regular classroom with remedial support services like a resource room program with testing modifications and adaptive equipment.

WHAT HAPPENS IF THE CFS CHILD IS FOUND TO BE ELIGIBLE FOR SPECIAL EDUCATION SERVICES? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1. Public Law 94-142 requires that the parents and school meet to make decisions regarding the special education program for the "OTHER HEALTH IMPAIRED" child. A written statement called an INDIVIDUALIZED EDUCATIONAL PROGRAM is developed with parental input.

2. The INDIVIDUALIZED EDUCATIONAL PROGRAM should include the child's learning strengths, weaknesses, type of specially designed educational program, related services, adaptive aids, testing modifications, program initiation date and annual review date.

3. A request to amend the individualized program may be made at any time. The program must be reviewed every year. A re-evaluation must be done every three years.

WHAT SPECIAL EDUCATION SUPPORT SERVICES MAY BE APPROPRIATE FOR CHILDREN WITH CFS? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1. There are several RESOURCE ROOM support service options.

A) A RESOURCE ROOM teacher provides specialized supplementary academic instruction to an individual or small group for a minimum of three hours per week, outside of the regular classroom.

B) A DIRECT CONSULTANT RESOURCE ROOM teacher provides specially designed instruction to a student or small group, in a regular classroom.

C) AN INDIRECT CONSULTANT RESOURCE ROOM teacher provides consultant services to regular education teachers to help them adjust the learning environment or modify instruction to meet the needs of the HEALTH IMPAIRED student.

2. RELATED SERVICES are special skills or services that are needed for the child to benefit from their academic instruction.

A) SPECIAL TRANSPORTATION may mean door-to-door bus transportation to and from school.

B) A PHYSICAL THERAPY evaluation should be requested as part of the evaluation process. A SCHOOL PHYSICAL THERAPIST may provide services that would help the child to participate in the academic setting. The PHYSICAL THERAPIST may assist the child in improving his/her gait (ability to walk), range of motion (ability to sit, stand, hold a pen), endurance (stamina), etc.

3. ADAPTIVE AIDS may be required to help the child benefit from instruction.

A) A CALCULATOR or ADDING MACHINE would assist a child with mathe matical calculations.

B) A TAPE RECORDER would assist in note taking due to memory, concentration or writing difficulties.

C) COMPUTER/WORD PROCESSING skills are required in many curricula. This also assists with writing and memory problems.

D) AN AMANUENSIS or SECRETARY records notes or test answers for a child who has problems writing.

4. TESTING MODIFICATIONS allow the CFS student an equal opportunity to demonstrate his/her capabilities on tests. Those modifications needed would depend on the particular needs of the CFS child.

A) FLEXIBLE SCHEDULING includes: 1) EXTENDED TIME to complete tests, 2) Administration of tests in SEVERAL SESSIONS over one or several days.

B) FLEXIBLE SETTING allows the test to be given in an alternate location with minimal distractions.

C) REVISED TEST FORMAT/DIRECTIONS includes: 1) READING THE DIRECTIONS and/or QUESTIONS to the student, 2) LARGER PRINT TESTS, 3) CHANGING the SPACING, LOCATION or SIZE of the ANSWER SPACES and 4) FEWER ITEMS on each page or MODIFICATION of the test content.

D) Any ADAPTIVE AIDS such as a CALCULATOR or TAPE RECORDER are to be used with tests.

E) Apply to THE NATIONAL LIBRARY OF CONGRESS; SERVICES FOR THE BLIND AND PHYSICALLY HANDICAPPED (202-287-5100) for information regarding a specialized cassette player on which to play recorded textbooks on tape.

WHAT ABOUT PHYSICAL EDUCATION? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1. The CFS child may take REGULAR P.E. class.

2. The P.E. class may be MODIFIED so that the child could participate to the extent that he/she is able to.

3. A SPECIALLY DESIGNED P.E. class may be developed.

4. A MEDICAL WAIVER from a physician may be necessary.

WHAT ABOUT THE HOME-BOUND CFS CHILD? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

1. The HEALTH IMPAIRED CFS child who is too ill to attend school is entitled to the same special support services.

2. THE HOME INSTRUCTOR should be a special educator or a CONSULTANT RESOURCE ROOM TEACHER should be provided for the regular education home instructor.

3. The same RELATED SERVICES should be provided such as HOME PHYSICAL THERAPY.

4. The ADAPTIVE AIDS should be provided to use at home.

5. The TESTING MODIFICATIONS should be followed during home instruction.

WHERE CAN I GET MORE INFORMATION?

A: * Your state education agency.

* National Information Center for Children and Youth with Disabilites at 1-800-999-5599

* Office of Special Education and Rehabilitative Services (OSERS) at 202-732-1723 --------------------------------------------------------------------

COLLEGE STUDENTS: ~~~~~~~~~~~~~~~~~

What rights do I have as a college student with CFS?

Section 504 Subpart E of the Rehabilitation Act of 1973 requires all post secondary schools (college and vocational), which receive Federal aid, to provide an equal opportunity to all handicapped students to all programs and activities. A handicapped person is "Anyone with a physical or mental impairment that substantially impairs or restricts one or more major life activities, such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working."

Adjustments must be made to the academic requirements. Examples of this are increasing the length of the time permitted for finishing a degree and providing auxiliary study aids (tapes, readers, adaptive equipment) for people with impaired sensory or manual skills.

College students are covered by the Federal Rehabilitation Act of 1973. ==============================================================================

Information for this text is from the brochure, "A School's Guide for Students With CFS," authored by:

Michelle L. Banks, M.S.,
MVPQ57A@Prodigy.com

This text prepared and provided by:

National Chronic Fatigue Syndrome Association
3521 Broadway, Suite 222
Kansas City, MO, USA 64111
(816) 931-4777
(Text may be reproduced and/or distributed provided sources are credited.)