Need to Know About Chronic Fatigue Syndrome
, a.k.a. Chronic
and Immune Dysfunction Syndrome (CFIDS)
By Michelle L. Banks,
- According to the Centers for Disease
Control and Prevention, chronic fatigue syndrome (CFS) "is an 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 pain, memory loss, and difficulty in concentrating. By
definition, the illness lasts at least six months and often for years."
- CFS/CFIDS researchers have
demonstrated that the physical and cognitive symptoms of the illness may
affect the learning process. The impact on educational achievement depends
on the severity of the symptoms and the time absent from school. Young
persons with CFS/CFIDS (YPWCs) may require a modified full school day,
half-day, or a total home tutoring program.
- YPWCs may be inaccurately perceived as
being lazy, school phobic, emotionally disturbed, or unmotivated.
- YPWCs may experience academic failure,
social isolation and resulting emotional distress, depression, and a loss of
- YPWCs who are not achieving to their
pre-illness state have the legal right to accommodations, related services,
or special education, so they may participate on an equal basis with their
peers. YPWCs have the right to achieve their full academic potential!
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- School is vital to a child's social,
emotional, and academic development. The classroom environment helps teach
children to be confident, productive members of society. YPWCs may miss
these educational and social opportunities.
- A regular education program may not
provide the best or most appropriate educational program for YPWCs. They may
need accommodations or specialized educational support services.
- Encourage parents to become active
partners in the development, implementation, and evaluation of their child's
- Notify parents of YPWCs' educational
rights under the Individuals With Disabilities Education Act (IDEA) and The
Federal Rehabilitation Act of 1973 (Section 504).
- If YPWCs are frequently absent and are
having difficulties with academics, conduct a special education evaluation
to define strengths, weaknesses, and learning styles. Determine if either an
Individualized Education Plan (IEP) or a 504 Plan is appropriate.
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How The "Individuals
With Disabilities Education Act (IDEA)" Applies to YPWCs
The Individuals With Disabilities
Education Act (IDEA) mandates a free appropriate public education for all
children with disabilities, assures due process rights, and mandates
education in the least restrictive environment possible.
YPWCs may fit IDEA's disability
classification of "OTHER HEALTH IMPAIRED" which is defined as having
"...limited strength, vitality or alertness, due to chronic or acute health
problems such as a heart condition, tuberculosis, asthma, leukemia... or
diabetes which adversely affects a child's educational performance."
The Committee on Special Education
should do an evaluation to determine if the classification "other health
impaired" and special education services are appropriate. The special
education evaluation is conducted by a multi-disciplinary team that may
consist of specialists in the areas of: psychology, special education,
medicine, and physical/occupational therapy, etc.
The special education assessment
should include: a health history and physical exam, individual psychological
evaluation, social history, classroom/home observation, appropriate
educational assessments to determine strengths, weaknesses, and learning
styles with parental and physician input.
Some CFS/CFIDS researchers have been
studying cognitive dysfunction in CFIDS looking for rehabilitation
techniques. They have used many different assessment tools including the
Wechsler Intelligence Scale (WISC) to measure the problems with: memory and
comprehension, word transposition (putting the wrong word in), directional
and spatial problems, acalculia (inability to do simple math), 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 or another intelligence test should identify YPWCs'
cognitive problems and assist in remediation techniques.
The physical symptoms of headache,
fatigue, sore throat, abdominal problems, dizziness, weakness, muscle/joint
pain, lymph node pain, eye pain, etc., will fluctuate in severity and at
times YPWCs may appear to be healthy. This presents the greatest challenge
to educators. Academic and physical ability may change from week to week,
sometimes hour to hour. The school must allow great flexibility in
programming and scheduling to maximize the potential for success.
If YPWCs are classified as "OTHER
HEALTH IMPAIRED," and this disability is adversely affecting educational
performance, a special education program should be provided in the least
restrictive environment possible. Most YPWCs' needs can be met in the
regular classroom or by home instruction, with remedial support services
such as a resource room program with testing modifications, related
services, and adaptive equipment.
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IDEA 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 Education Program (IEP) is developed with parental input.
The IEP should include the YPWC's
learning strengths, weaknesses, type of specially designed educational
program, related services, adaptive aids, testing modifications, program
initiation date, and annual review date.
There should be an annual meeting to
review the IEP, but requests to amend or change the IEP may be initiated by
parents, teachers, or the school. The Committee on Special Education must
convene to discuss any changes.
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Special education is defined as
specially designed instruction to meet the unique needs of the
Individualized Education Program (IEP). This includes classroom, hospital,
or home instruction. This is vital for home-bound YPWCs.
Special education includes Related
Services which are support services needed for the child to benefit from
academic instruction. For YPWCs this may include: special transportation
(door-to-door), physical therapy (to improve muscle strength, mobility,
range of motion, posture, endurance), occupational therapy (to improve
school skills - writing, managing books and papers), etc.
Adaptive Aids may be
required to help YPWCs benefit from instruction and may include: calculator,
tape recorder (note taking), computer/word processor, amanuensis (person who
writes notes or test answers), books on tape (Recording for the Blind and
Dyslexic, Inc. 800-221-4792), etc.
allow YPWCs an equal opportunity to demonstrate their capabilities on tests
and may include: flexible scheduling, extended time, flexible or alternate
setting, revised test format/directions, use of aids, etc.
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There are few regulations addressing
home instruction unless it is a disciplinary matter. Some districts may have
home/hospital instruction guidelines, but these are geared toward a short
term absence. It is imperative that schools make every effort to provide a
good home tutoring situation.
A good home tutoring situation exists
when there is communication between the home tutor and the classroom
teachers. The home tutor must have access to the academic lesson objectives
and to the materials needed to present and evaluate those goals.
YPWCs identified as "OTHER HEALTH
IMPAIRED" and receiving special education services are entitled to those
services, accommodations, and/or adaptive aids as part of their home
tutoring. This should be written into the IEP. For example, in New York
State, resource room teachers have served as liaisons between the school and
the home tutors.
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- If YPWCs are achieving to their
pre-illness state, and their educational performance has not been adversely
affected, then they are NOT eligible for services under the Individuals With
Disabilities Education Act.
- The Federal Rehabilitation Act of 1973
is a civil rights law. Section 504 assures equal opportunities for disabled
youth in schools receiving federal funds.
- With proper medical documentation, YPWCs
qualify as "persons with a disability" under Section 504. A disability is
having a physical or mental impairment which substantially limits a major life
activity such as caring for oneself, walking, working, etc.
- YPWCs need to be put in touch with the
504 contact person so that documented modifications, accommodations or aids
may be put into a plan. This 504 "plan" will list what is needed for a YPWC to
participate and benefit from the educational program.
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For Further Information: Contact
National Information Center for Children and Youth with Disabilities
1-800-695-0285; web site: http://www.nichcy.org
Banks, MS ed.