Responsibilities and Options
By Michelle L. Banks
A mother sits
across from the school
psychologist while he explains the results of her daughter's special education
evaluation. The psychologist holds up a piece of paper with a shakily drawn
house with 3 stick figures in front. The mother is told that the poorly drawn
house and the shaky stick figures could indicate that her daughter is
"emotionally dependent and possibly school phobic." Hoping that it would be a
positive sign, the mother points out that the stick figures are holding hands.
The psychologist explains that there is a
"significant drop" of 21 points on the WISC-R intelligence test from earlier
testing when her daughter was placed in gifted classes. This "profile suggests
difficulties with memory, concentration, and attention." He explains that while
her "ability to process information auditorially is excellent, this is in direct
contrast to difficulties with math computation done in her head." The
psychologist says that while testing, her daughter seemed "distractable and
impulsive" which demonstrates poor planning and organizational skills.
"Are there problems at home?" the
After medical care, school is the most
important consideration in the lives of young persons with CFIDS (YPWCs). School
is central to a child's development. The classroom is where children spend most
of the day learning to be happy, successful, and productive members of society.
Parents and teachers must work together in a partnership based on mutual
respect. They are working towards the common goal of the best and most
appropriate educational services for that child.
Chronic fatigue and immune dysfunction
syndrome (CFIDS) is a complex illness that has been widely debated within the
medical community, leading to misinformation and confusion; therefore, positive
interaction and communication with teachers is vital for the parents of a YPWC.
The lack of understanding, in combination with a pattern of CFIDS symptoms that
may wax and wane, makes it unrealistic to expect that a school would have an
educational plan for a YPWC. Most parents find it necessary to educate the
school about CFIDS while at the same time working to identify their child's
unique academic strengths and weaknesses.
Many parents have described feeling so
overwhelmed by the ordeal of attaining an actual medical diagnosis that they
really dread having to tackle yet another potential obstacle, the school. One
mother said, "I was just waiting for things to return to normal and I realized
that this might be 'normal' for our family for a while." Parents have said that
by becoming educational advocates and working with the school, they felt
empowered. In a seemingly out of control situation, they felt that they were
working toward the goal of a greater understanding of CFIDS while helping their
child to succeed in school. Although there are other options, the best results
seem to come to fruition when there is an atmosphere of mutual respect and
In becoming educational advocates, parents
need to have a basic understanding of what federal laws or regulations may apply
to YPWCs. It's necessary to make a distinction between laws that address civil
rights and those that are education laws. Civil rights laws like the Federal
Rehabilitation Act of 1973 (Section 504) and the Americans with Disabilities Act
(ADA) make it illegal to discriminate against a person with a disability.
Education laws like the Family Education Rights and Privacy Act (Buckley
Amendment-FERPA) and the Individuals with Disabilities Education Act (IDEA)
specifically address educational issues. This article will briefly define and
discuss the above laws and how they may relate to YPWCs.
EDUCATIONAL ADVOCACY -- WHERE DO PARENTS
Parents are the ultimate educational
advocates. Every time they attend a parent-teacher conference, go to a school
board meeting, or review a homework assignment, parents are taking a pro-active
role. They are defining what their child's educational future will be. CFIDS
adds a new dimension to this role; therefore, it's necessary that parents have
some additional information about their child's educational past. This
information will help to identify the child's unique learning style to see if
the onset of CFIDS has in anyway altered his/her educational ability or
FAMILY EDUCATION RIGHTS AND PRIVACY ACT
This federal law is commonly referred to as
the Buckley Amendment or FERPA. FERPA gives parents (and students 18 years and
over) the right to have access to their child's educational records, the right
to have the records amended, and the right to have some control over disclosure
of the records. Educational records are defined as those records that contain
information related to a student and are maintained by an educational agency.
These may also include disciplinary records, psychological reports, or health
FERPA states that parents may "inspect,"
"review," and "challenge" any information that they feel is inaccurate,
misleading, or a violation of any rights. The material in this file should be
objective, not subjective like an opinion or comment that is unverifiable. The
records should not have comments of a personal, subjective nature such as the
mother is "crazy" or a child is "lazy" (actually seen stated in school records).
Parents should make a request in writing to
inspect all educational records. This letter should include a request for those
records in the main school office, guidance office, and the health office. The
school is allowed to charge a small fee for the copies but not for the time
required to make the copies. Parents are encouraged to review these records and
to contact the school with questions. If parents wish to "challenge" a part of
the file, they should do so in writing and state the reasons as to why the
information is "inaccurate," "misleading," or a "violation." If the school
disagrees, the parents may contact the state education department or the U.S.
Department of Education to file a complaint.
It's a good idea to keep updated copies of
a YPWC's educational records. It's helpful to know what records, testing data,
or comments will be following the child all the way through his or her academic
life. It will provide a comparison which may give some clues as to how CFIDS is
affecting learning. There may be evidence in the file that will help justify a
request for additional specialized services if the child is not achieving up to
his/her pre- illness state. Parents should keep track of this information, which
is more detailed and complete than a report card.
LAWS THAT MAY PERTAIN TO A YPWC's
Every disabled child in the United States
is entitled to a free, appropriate public education . YPWCs have the right to
participate on an equal basis with their peers. This is not to say that they
should be given preferential treatment or an unfair advantage. They should have
access to any necessary educational resources needed to reach their full
educational potential. YPWCs should be at the starting line of the race, not 10
feet behind their healthy peers.
Studies have shown that CFIDS may cause
physical and cognitive symptoms that may affect academic success. The impact on
education and learning depends on the severity of the symptoms and the time
absent from school. There is a continuum of educational services, as there is of
symptoms. In cases, a YPWC may not need any additional support services. In
severe instances, a YPWC may need to receive instruction in the home. As
educational advocates, parents must know their legal rights and be knowledgeable
about the options available.
REHABILITATION ACT OF 1973, SECTION 504
The Federal Rehabilitation Act of 1973
considered to be the hallmark civil rights statute protecting the civil rights
of people with disabilities. There are four sections, but Section 504, having to
do with non-discrimination under federal grants, states...
"No otherwise qualified person with
disability in the United States... shall, solely by reason of... disability, be
denied the benefits of, be excluded from participation in, or be subjected to
discrimination under any program or activity receiving federal financial
Section 504 assures "equal" opportunities
for children and youth with disabilities in schools receiving federal funds
(preschools, elementary, secondary, and post-secondary institutions).
Essentially it says that a school may not discriminate on the basis of a
disability if it receives operational funds from the federal government. 504 is
considered to be the preeminent legislation when dealing with post-secondary
education. Complaints are referred to the Department of Education's Office of
Civil Rights (OCR) to be investigated, making this an issue of civil rights.
This differs from the Individuals with Disabilities Education Act (IDEA) where
complaints are taken to an educational agency.
A YPWC may be considered to be an
"individual with a disability" and qualify for protection under this civil
rights statute. A "person with a disability" includes:
1) "any person who has a physical or
mental impairment which substantially limits one or more major life
activities" such as caring for oneself, walking, breathing, learning, working,
2) or "has a record of such an
impairment," such as educational, medical or employment records
3) or who is "regarded as having such an
impairment," whether true or not.
A YPWC would have to meet one of these
criteria to be considered a "person with a disability." Section 504 lists
eligible conditions such as epilepsy, asthma, arthritis, diabetes, specific
learning disabilities, and mental retardation because these conditions may
"substantially limit" the ability to perform a "major life activity" such as
walking, standing, sitting, etc. These definitions are purposely broad so as not
to exclude a person whose particular disability might not be mentioned in the
regulation itself, as is the case of CFIDS.
The impact of Section 504 on educational
services is that disabled YPWCs may request modifications, accommodations, or
auxiliary aids which will enable them to participate in and to benefit from the
educational program. Again, this is broad and non- specific with regard to
education because it is not an educational law as is the IDEA. However, more
YPWCs may qualify for services under 504 because it doesn't have the requirement
that CFIDS be adversely affecting educational performance.
YPWCs may seek protection from
discrimination and be afforded "reasonable accommodation" under 504 to avoid
being classified and designated as special education students. They may request
a "504 Plan" that would include any program modifications, related services, or
auxiliary aids that are needed. These might include testing modifications, books
on tape, special transportation, etc. It's important to note that there is no
requirement for a written plan under this federal law. There may be requirements
within individual state regulations or school districts may have guidelines for
written plans. Because of this and the lack of set time limits, a "504 Plan"
requires a very good working relationship between the parents and the school.
ANOTHER APPROACH: SPECIAL
Historically, little attention was given to
the needs of persons with disabilities. In response to parental advocacy, the
courts began to address this issue. Beginning with the Federal Rehabilitation
Act of 1973, the era of disability civil rights began. In 1975, Public Law
94-142 became the hallmark piece of legislation that addressed the special
educational needs of children with disabilities. This law has been amended
several times. At this time the most recent re- authorization is:
THE INDIVIDUALS WITH DISABILITIES
EDUCATION ACT (IDEA)
The IDEA guarantees a free, appropriate
public education to eligible children/youth with disabilities, assures due
process rights, and mandates education in the least restrictive environment
possible. The main objectives of the IDEA are:
1) to guarantee a free appropriate public
education including special education and related services for eligible
children/youth with disabilities;
2) to see that the decisions made
about the special education services are fair, appropriate, and provided in
the least restrictive environment;
3) to assure that the rights of
children/youth with disabilities and their parents are protected by due
4) to provide federal funds to assist
state and local governments in providing special education services. This is
an important distinction as schools providing services under 504 receive no
additional federal monies to do so.
To qualify for special education services
under the IDEA, a YPWC must have a disability that is "adversely affecting
educational performance." This is different from 504 where a YPWC may receive
accommodations as a "disabled" person with no educational problems. For example,
an academically successful physically challenged person may only need special
transportation or occupational therapy and be serviced under a 504 plan. Another
physically challenged child may be having difficulty achieving up to his/her
expected level of performance and needs special education services under the
There is a list of educational disabilities
or classifications under the IDEA. The disability category or classification
that may apply to YPWCs is called "other health impaired." The definition
Other health impaired is "having limited
strength, vitality, or alertness, due to chronic or acute health problems such
as a heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle
cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, or diabetes, which
adversely affects a child's educational performance".
This definition includes some possible
examples of health impairments but does not include all of them. It was written
in broad terms like the "disability" list in 504 so as not to exclude other
chronic illnesses like CFIDS.
If eligible under the IDEA, a YPWC will
receive special education services which are expressly designed to meet his/her
unique needs. This includes an "Individualized Education Program" (IEP) (with
educational goals and objectives), related services (physical therapy,
occupational therapy), adaptive aids (calculator, word processor, books on
tape), testing modifications (extended time limits, answers recorded in any
fashion), special transportation (door- to-door), etc.
It's understood that there seems to be a
stigma attached to special education. There is a perception of that "little
classroom" in the basement with students who are very developmentally delayed
and who are taunted by their "normal" peers. Hopefully, this is changing as more
students with special needs are receiving services in regular classrooms. But,
as with everything, the more severely impaired student is whom we think of when
we hear the words "special education." Although the definition of "other health
impaired" was written over 20 years ago, few students are identified and receive
services under the IDEA.
YPWCs are SPECIAL and deserve whatever
helps them to succeed in school. Is being known as a YPWC any less of a stigma
then being known as a person with a health impairment?
THE SIMILARITIES AND DIFFERENCES BETWEEN
SECTION 504 and IDEA
Section 504 of Federal Rehabilitation Act
of 1973 and the Individuals with Disabilities Education Act (IDEA) strengthen
each other in that schools must provide a "Free and Appropriate Public Education
" for disabled children/youth along with non-disabled peers to the maximum
extent appropriate (least restrictive environment), at no cost to the parents.
There are 2 major differences.
1) A child may be considered as having a
"disability" under Section 504 but may not qualify for services under the
IDEA. To be eligible for special education services under the IDEA, the
disability must be adversely affecting the child's educational
performance.Section 504 is broad and the IDEA is more specific.
2) IDEA establishes a federal grant
program to assist states in providing special education and related services
to eligible students. Section 504 is not an education law or a federal grant
program. It is a civil rights statute that prohibits discrimination on basis
of a disability. States must comply with 504 to retain federal financial
assistance, but they do not receive federal funds to pay for services provided
to students with disabilities covered under 504.
Like any law, the IDEA is subject to
change. These changes may come from courts or Congress. Judges make written
decisions in response to lawsuits based upon how they interpret the law. There
is also much discussion within state legislatures about the allocation of
special education funds. Some states are considering putting a cap or limit on
how much each school district can spend on special education. This will put
pressure on districts to not classify new students under the IDEA. Based upon
what is now being proposed by Congress and some state governments, it will
become increasingly difficult to get services under 504 or the IDEA, especially
for YPWCs whose needs for special services may be questioned.
WHERE DOES THE AMERICANS WITH DISABILITIES
ACT (ADA) FIT IN?
The Americans with Disabilities Act of 1990
(ADA) is the civil rights guarantee for persons with disabilities. The ADA
provides protection from discrimination on the basis of a disability. It also
extends the rights established by the 1973 Federal Rehabilitation Act to
accessibility and employment in the public and private sector, public
accommodations, services provided by state and local governments, and
telecommunication relay services. The ADA should be taken into consideration for
a YPWC college student or a YPWC while working or looking for employment.
For example, under 504 of the Federal
Rehabilitation Act, a YPWC college student would only have been entitled to
receive special accommodations if the learning institution was receiving federal
monies. Under the ADA, that civil rights protection has been extended into the
private sector. A private educational institution has to ensure the same
accessibility rights and reasonable accommodations to a YPWC with a documented
The Americans with Disabilities Act (ADA)
may protect YPWCs in the employment world. A YPWC who gets a part-time job may
need some special accommodations in order to work. Recently, a YPWC was doing
well and was able to work. As suggested by the ADA Job Accommodation Network,
the YPWC got a note from the physician stating that the following "reasonable
accommodations" were needed in order to perform the "essential functions" of the
job. This YPWC needed to be able to drink water, use the restroom, and have
assistance when lifting heavy objects. With these accommodations, the YPWC was
able to take the job as a cashier. The ADA didn't require that this YPWC get
preferential hiring or special treatment because it isn't an affirmative action
program. The ADA allowed this YPWC an equal chance to get and to keep the job.
IS CFIDS AN EDUCATIONAL
CFIDS researchers have demonstrated that
the physical and/or cognitive symptoms may affect the learning process. The
physical symptoms may include: severe fatigue, sleep disturbance, muscle and/or
joint pain, balance problems, dizziness, headaches, visual problems, abdominal
pain etc. YPWCs may have cognitive problems in the areas of attention,
concentration, short-term memory, word finding, spatial relationships,
mathematical processes, etc.
WHAT CAN PARENTS DO IF THEY SUSPECT THAT
CFIDS MAY BE INTERFERING WITH THEIR CHILD'S EDUCATION?
Parents have the right to request an
"evaluation" of their child. Under Section 504 of the Federal Rehabilitation
Act, the evaluation must assess all areas related to the suspected disability;
but it is suggested that parents request a special education evaluation because
there is a set time table, specific guidelines, and more due process rights.
The Individuals with Disabilities Education
Act (IDEA) states that a request for an evaluation may come from the parents or
the school. Parents should make a written request to the building administrator
and/or the administrator in charge of special education services. Including a
note from your physician is important in the case of a chronic illness such as
Sample Special Education Evaluation
Dear (Building Administrator or District
I am writing concerning my child (include name, DOB,
school and grade) to request that you conduct an individual evaluation to
determine whether or not an educational disability is present that would make
my child eligible for special education services.
I am concerned about my
child's educational difficulties in the following areas: subject areas (math,
reading, English, social studies, science) or grades.
Please contact me as
soon as possible.
Name, Address, Phone
If the school refuses to evaluate your
child because it does not suspect a disability, you must be given written notice
of refusal with a full explanation. This letter must also include the procedural
due process safeguards available under IDEA which include your right to
challenge the refusal by requesting an impartial due process hearing.
WHAT IS A SPECIAL EDUCATION
A special education evaluation under the
IDEA should assess the total child and his/her unique needs. With parental
permission, formal tests, observations, and assessments are done to determine if
there is an educational disability and the type of special education services
needed. The regulations are very strict about how school districts must conduct
evaluations of children who may have a disability, and due process guidelines
apply to protect the child's rights. Parents must be informed of their rights,
and each school district should have its own information packet.
By law, a "multi-disciplinary team" must be
involved in this comprehensive, individualized assessment. The team may include
a school psychologist, educational diagnostician, medical specialist, speech and
language pathologist, occupational or physical therapist, physician, classroom
teachers, etc. This team approach ensures that information can be gathered in
several ways because the law requires that no single procedure or test be the
sole criterion for determining the appropriate educational placement
The evaluation process should include:
1) observations by professionals
who have worked with the student;
2) a medical history (in the case
of a YPWC);
3) input from the family and
student about school;
4) tests that examine academic
ability, intellectual functioning, and other factors s as appropriate. (Ask
that your child be evaluated by a physical therapist and/or an occupational
therapist. For example, a YPWC may have difficulty holding on to a pen,
sitting up in a chair, or walking from class to class.)
If parents disagree with the results of the
school evaluation, they have the right to obtain an "Independent Educational
Evaluation" (IEE). This means that parents may request that a qualified
professional examiner or a qualified clinic conduct another evaluation of the
child. This person or clinic must not be employed by the school district. School
districts usually maintain a list of qualified examiners. Parents may request an
examiner not on the list if it can be demonstrated that there are some unique
circumstances that justify it.
The cost of an independent educational
evaluation may be paid for by the school district, depending on the
circumstances. Parents may pay for their child's evaluation if they choose.
Regardless of who pays for the IEE, the school district must consider the
outside evaluation results when making any decisions about the educational
program of the child.
The information gathered from the special
education evaluation will be used to determine if the child is "eligible" for
special education and related services. In most cases the school will hold a
meeting to decide if the child meets the eligibility criteria of "other health
impaired" and if this impairment adversely affects educational performance.
Parents should inquire about attending the eligibility determination meeting.
Then an "Individualized Education Program" or "IEP" will be developed. YPWCs not
eligible under IDEA for special education would still qualify for a "504 Plan"
as a "person with a disability" under Section 504 of the Federal Rehabilitation
Act. The services under IDEA are preferable and most appropriate because of the
instructional goals, transition services, and due process protection.
THE INDIVIDUALIZED EDUCATION PLAN
An Individualized Education Plan (IEP) is
developed following the determination that a child is eligible for services. The
IEP is a written statement of the educational program designed to meet a child's
special needs. The IEP's purpose is to establish learning goals and to state the
services that will be provided by the school. It is important because it is the
basis for instruction. The IEP is used to document and review progress toward
those goals. It's important to note that the IEP is not a legally binding
contract that will assure that every annual goal is met. It is more of a letter
of intent to provide the services needed to meet those goals.
THE "IEP MEETING"
The Individualized Education Program (IEP)
is developed in an "IEP Meeting." The IEP is not supposed to be completed prior
to the meeting and presented for the parents to sign. Staff involved may come
prepared with recommendations regarding the goals, but parents have much to
offer in the development of the IEP because of their first hand knowledge of
their child. They are an important part of the "team" and should speak freely.
The purpose of the IEP meeting is to
develop short-term instructional objectives and the appropriate evaluation
criteria to measure the achievement of the objectives. There should also be a
schedule to review the IEP at least yearly.
The following people should participate in
the development of the IEP:
1) parents of the student, to
2) the student, if appropriate,
especially at the secondary level;
3) the child's regular education
teacher, special education teacher, and/or home tutor;
4) a representative of the school
system, other than the teacher;
5) others requested by the school
or the parents: parent advocate, clergy, case worker, or friend;
6) other school personnel: physical
therapist, guidance counselor, administrator, school nurse, etc.
CONTENT OF THE IEP
School districts develop their own IEP
forms, but by law, the Individualized Education Program (IEP) must include
statements with the following information:
1) present level of educational
performance and individual needs in the areas of academic achievement, social
and physical development, and management;
2) classification of the educational
disability, which for YPWCs is "other health impaired";
3) continuum of services which describes
the specific type of special education services and related services and who
will provide them;
4) annual goals, which are objectives
that may be reasonable for the child to attain in one year;
5) short term objectives, which are
smaller, measurable steps that are needed to achieve annual goals;
6) projected date of initiation of
services and frequency and duration of services;
7) specialized equipment and
8) testing modifications;
9) recommended placement in the
least restrictive environment, including home/hospital settings;
10) transition services, for employment,
post- secondary education, etc. to begin no later than age 16.
The IEP document is a written record
decisions reached at the IEP meeting. For YPWCs, the special education
classification of "other health impaired" will be stated. Also listed will be
the annual goals/objectives and the specialized services, modifications and/or
aids that will be needed to achieve those goals. The type of placement (special
class, resource room, or home/hospital instruction), a service initiation date,
and review date will be given. Following is a more detailed explanation of
annual goals/objectives, testing modifications, transition planning, and related
IEP ANNUAL GOALS AND SHORT-TERM
The Committee on Special Education uses the
special education evaluation to determine the child's unique learning profile.
This informational overview of a student's academic function, strengths, and
weaknesses helps with the development of IEP goals/objectives which assist the
child in achieving full academic potential.
This unique learning profile is used
write the IEP "annual goals." These goals are statements that describe what the
student may reasonably expect to achieve within a 12-month period. The annual
goals are related to the student's present level of academic function. For
YPWCs, some annual IEP goals may be to improve word analysis and reading
comprehension, mathematical calculations and applications, written language,
organizational skills, etc.
The annual goals are then broken down
smaller, more easily measured tasks called "short term instructional goals" or
"IEP objectives." The IEP objectives are used as milestones or benchmarks to
measure the progress that has been made toward achieving the annual goals. Both
the annual goals and the IEP objectives are concerned with meeting the special
needs of the student by reducing the effects that the disability has on
For example, an "other health impaired"
YPWC might have an annual goal of improving math skills. One short term
objective or IEP goal may be "Given seventh grade math word problems, the
student will identify the correct operation and solve the problems." Another
YPWC might be having problems with organization, and a short term IEP objective
would be "Given seventh grade academic classes, the student will demonstrate
good work habits by keeping well organized notebooks." An appropriate written
language goal is: "Given a topic, the student will use a good writing model to
pre-write, draft, revise, and edit a 500-word composition."
The IEP goals and objectives are related to
the special education plans. They aren't detailed or specific enough for a daily
lesson plan book, but they do serve as the basis for the general path that the
special education teacher will take. In many cases, YPWCs will be in regular
classes most of the time, with extra help through resource room service in
addition to the regular classroom instruction. The IEP is designed to track a
classified student's progress with the special education services, not with
regular education. At any time, the parents or the school may make a request to
review and to change these IEP goals; this would be done at another IEP meeting.
IEP TESTING MODIFICATIONS
Testing modifications are changes in
testing procedures or formats which provide students with an equal opportunity
to participate in test situations and to demonstrate their knowledge and
abilities. This gives students with disabilities the chance to demonstrate their
mastery of skills and attainment of knowledge without being limited or
restricted due to the effects of their disabilities. The modifications will be
based on each students' individual needs as determined by the special education
evaluation and the IEP meeting.
These are some possible testing
1) Flexible scheduling: YPWCs may tire
and need frequent breaks. A time extension, in which the test is administered
before the specified time and/or continues after the specified time, over
several sessions or several days may be necessary. Testing duration is the
maximum time that a student should work without a break. For example, a
10-minute break for every 40-minute testing period.
2) Flexible setting: YPWCs may be easily
distracted or have difficulty remaining on task, may require a reader or a
writer (which may be distracting to others), may be on home or hospital
instruction, and/or may need special lighting, acoustics or furniture. Tests
may be given individually or in a small group in an alternate testing
3) Revised test format: YPWCs may have
visual, perceptual, or motor problems which make it difficult for them to read
regular-size print or maintain their place on a page. Transcription of the
test to large print, increasing the spacing between the test items, changing
the size, shape or location of the answer spaces, or placing fewer items on a
page, are examples of revised formatting.
4) Revised test directions: YPWCs having
visual, perceptual, or motor problems may need the entire test and/or just the
test directions revised. Examples are: rewriting test directions in simple
language, underlining key words, and reading and/or rereading directions.
5) Use of aids: YPWCs may need special
equipment or assistance to interpret and/or to respond to test items. These
may include: typewriters, word processors, tape recorders,
amanuensis/secretary, or other aids.
IEP TRANSITION SERVICES
The IDEA requires that the IEP contain a
statement of the "transition services." Transition services are what classified
students need to prepare for what they do after high school. The IDEA defines
transition services as:
"a coordinated set of activities for a
student, designed within an outcome-oriented process that promotes movement from
school to post-school activities, including post-secondary education, vocational
training, integrated employment (including supported employment), continuing and
adult education, adult services, independent living, or community
participation... the coordinated set of activities must... be based on the
individual student's needs, taking into account the student's preferences and
interests, and... include... instruction, community experiences,... development
of employment and other post school objectives... beginning no later than age 16
(and younger if determined appropriate)..."
Transition services are intended to help
identify those goals or services that are needed by "other health impaired"
students as they move into adulthood. This is an opportunity for YPWCs to take
control of their lives and to become their own advocates. The transition plan
needs to address the impact a chronic illness like CFIDS has on employment,
education, and daily living. Transition planners should locate resources that
would assist YPWCs educationally, financially, or medically. They should educate
YPWCs about their rights under the Family Education Rights and Privacy Act
(FERPA), the Federal Rehabilitation Act-Section 504 and the Americans with
Disabilities Act (ADA). It's important to think about what the YPWC is going to
do after high school and what resources or accommodations will be needed to
achieve those goals.
If the YPWC's goal is to continue education
after high school, then the transition plan should reflect this. This is true if
the goal is a vocational-technical type program or an academic college program.
Some appropriate transition goals or objectives might be: to learn/improve good
study habits, identify the schools that offer the desired vocational or academic
programs, do vocational assessment, arrange for the necessary testing
accommodations needed during SATs or other entrance exams, apply to the schools,
etc. The most important goal is for the YPWC to learn the necessary skills to be
his/her own educational advocate.
Transition planning is vital as YPWCs
graduate from high school and leave the protection of the Individuals with
Disabilities Education Act. The IDEA covers children/youth with disabilities
until age 21 or high school graduation. After high school graduation, an IEP
does not exist and YPWCs will have to look for their rights as "persons with
disabilities" under Section 504 of the Federal Rehabilitation Act and the
Americans with Disabilities Act. There is no transition plan required under 504
as there is under the IDEA.
RELATED SERVICES IN THE IEP
IDEA defines "related services" as:
"...transportation, and such developmental,
corrective, and other support services (including speech pathology and
audiology, psychological services, physical and occupational therapy,
recreation, including therapeutic recreation and social work services, and
medical and counseling services including rehabilitation counseling, except that
such medical services shall be for diagnostic and evaluation purposes only) as
may be required to assist the child with a disability to benefit from special
Related services are provided in
conjunction with academic classes to assist classified students with their total
education program. A related service is different from a special class or a
resource room in that the person providing it has special knowledge and skills
that aren't usually taught in an academic classroom. These special skills are
needed by students to benefit from special education instruction. A common
example of a related service is speech and language. A "speech" teacher is a
specialist in speech pathology and generally works with eligible students for
one to two sessions a week. These "speech or language" impaired students need to
improve their communication skills in order to benefit fully in their regular
The need for related services will
determined during the special education evaluation and written into the IEP.
Some examples of related services are: speech therapy, physical therapy,
occupational therapy, transportation services, psychological, social work,
counseling, school health services, etc. The IEP will state the type of related
service specialist needed and the frequency and duration of that support
service. IDEA makes federal funds available to help states provide special
education and related services for students with "disabilities." There is no
cost to the parents for these specialists.
Some YPWCs classified as "other health
impaired" have benefited from physical or occupational therapy. Following
physician referrals, YPWCs were evaluated by physical and/or occupational
therapists during the special education evaluation. The Committee on Special
Education determined that these YPWCs needed physical and or occupational
therapy support services in order to participate fully in their educational
Physical therapy (PT) is provided to
increase muscle strength, mobility, and endurance. PT focuses on gross motor
skills that rely on the large muscles of the body involved in physical movement
and range of motion. A physical therapist helps students improve posture, gait,
and body awareness. In special education, physical therapy is concerned with
developing full physical potential so that classified students can achieve
maximum independence and function in all their educational activities.
YPWCs may be house-bound and have
difficulty sitting up for an extended period of time. Due to joint and muscle
pain, they may become deconditioned, losing flexibility and range of motion.
Other YPWCs, able to attend school full or part time, may still have difficulty
walking from class to class or even sitting at a desk for a full school day. IEP
goals for physical therapy might be: "to improve strength, endurance and
flexibility in learning and school activities."
Occupational therapy (OT) focuses on
way a disability like CFIDS impacts daily life functioning. Daily life
functioning includes daily living skills such as eating and dressing, school and
work skills such as writing, using scissors, sitting effectively in class, and
managing books and papers. OT treats fine motor functions of the small muscles
which affect eye-hand coordination and manual dexterity. One YPWC's OT goal was
to "conserve energy throughout the school day." The occupational therapist
assisted with energy conservation techniques such as taking the school elevator
and having an extra set of books at home. The OT prescribed equipment like
rubber grip pen holders, book stands, computer armrests, and wrist splints.
YPWCs who are not classified as "other
health impaired" under IDEA may still be eligible for related services under
Section 504 of the Federal Rehabilitation Act. YPWCs with proper medical
documentation are considered to be "persons with disabilities" and are covered
under 504. The law requires... "the provision of... free... and appropriate
educational services and related services... " There is no IEP, but the
student's needs are addressed in a 504 plan. 504 is a civil rights law, and the
IDEA is a special education law.
The IEP is not a guaranteed performance
contract that imposes legal liability on the teachers or the school if the
classified student does not achieve all the IEP objectives. By law, the special
education and related services must be provided as stated in the IEP. The intent
is that the school and teachers make a good faith effort to assist the student
in achieving his/her IEP goals. The parents still have the right to ask for IEP
revisions if they feel that these efforts are not being made.
DUE PROCESS UNDER
Due process describes procedures that
used to protect a child's right to a free, appropriate public education . Laws
such as The Family Educational Rights and Privacy Act (FERPA), Federal
Rehabilitation Act of 1973, The Americans with Disabilities Act and the
Individuals with Disabilities Education Act all address due process issues
concerning education and/or employment. IDEA has very specific due process
procedures called "procedural safeguards" and requires that parents be given
this information. These safeguards are designed to protect the rights of parents
and their children with disabilities. This also gives families and schools a
mechanism for resolving disputes. These are important rights to remember when a
YPWC is receiving services under IDEA.
1) Parents have the right to
confidentiality of information. With the exception of school personnel, no one
may see a child's records without written permission from the parents.
2) Parents have the right to participate
in every decision relating to the identification, evaluation, and placement of
their child. This is accomplished by attending the meetings, asking questions
and giving information from a parent's point of view.
3) Parents must give consent for any
initial evaluation, assessment, or placement. They must be informed,
knowledgeable, notified of any change in placement, and included in meetings
to draw up IEP and must approve these plans before they go into effect for the
4) Parents have the right to challenge
and appeal any decision related to the identification, evaluation, and
placement of their children by following clearly stated due process
An excellent resource is NICHCY (The
National Information Center for Children and Youth with Disabilities). NICHCY
can be reached by telephone at: 800/695-0285, by e-mail at firstname.lastname@example.org, and
at their web site:
The Individuals with Disabilities Education
Act (IDEA) is viewed as the major resource and entitlement for children and
youth with special education needs. This is due to the IDEA's federal funding,
specific instructional goals, and detailed procedural guidelines. But as has
been explained, there is a civil rights law called the Federal Rehabilitation
Act that protects YPWCs as persons with disabilities. If an evaluation finds
that CFIDS is not adversely affecting the YPWC's educational performance, then
that YPWC may still be eligible for accommodations under Section 504 of the
Federal Rehabilitation Act.
There is no requirement for a written
Plan," but many school districts have some type of 504 plan form. Eligible YPWCs
may receive related services, testing modifications, special aids or equipment
similar to those described in the Individualized Education Program (IEP). Unlike
the IEP, a 504 plan does not address specific instructional goals or have
transition services. 504 provides the necessary accommodations that will enable
disabled YPWCs to participate in and to benefit from educational programs and
Section 504 has had the greatest impact
post- secondary education because most colleges and universities (even private)
receive federal funds. The Americans with Disabilities Act (ADA) extends these
rights into the private sector. On campuses, "disability services coordinators"
work with eligible students to identify what types of accommodations are needed.
Examples of 504/ADA accommodations are:
1) providing course modifications,
substitutions or waivers of courses, major fields of study, or degree
requirements. (These accommodations would not have to be made if the college
can demonstrate that the change would substantially alter the essential
elements of the course program);
2) providing services such as readers,
interpreters or note takers;
3) permitting testing modifications such
as flexible scheduling, alternate setting, and revised test format;
4) permitting the use of computer
programs or other assistive technological devices to assist in test taking and
A good resource is HEATH (National
Clearinghouse on Post-secondary Education for Individuals with Disabilities).
HEATH can be reached by telephone at 202-939-9320 or by e-mail at
email@example.com, and at their
Most federal laws passed by Congress
establish minimum standards that states must follow in order to receive federal
funds. Often federal laws give the states flexibility in the implementation and
delivery of educational services. Most education regulations come from state and
local governments, with the exception of special education which is strictly
regulated under the Individuals with Disabilities Education Act (IDEA). Every
three years, states must have approved plans to demonstrate how they provide a
free, appropriate public education for children with disabilities. It's
important to become familiar with the state and local laws regarding education.
Write to the state department of education and ask for a copy of your state's
special education law regulations, policies, and any recent judicial decisions
that could affect educational services. For example, there are state proposals
to put a "cap" or a limit on what percentage of a school district's enrollment
may be identified as needing special education services. Parents have the right
to a copies of this important information so that they may be informed
YPWCs AND SCHOOL
YPWCs face many challenges in coping
CFIDS. Dealing with the school can be very frustrating because there isn't a
specific educational plan for remediating the problems caused by CFIDS. Each
YPWC needs to be evaluated on an individual basis to determine his/her own
unique learning style. If YPWCs are not achieving to their pre-illness state,
then they are eligible for services under the IDEA. Parents may be reluctant to
classify their child as "other health impaired," but all that definition means
is that CFIDS is adversely affecting their child's educational performance. The
special education services, accommodations, and related services are to address
the very special needs that YPWCs have. YPWCs are entitled to the same
educational opportunities as any other child. Their educational success
shouldn't be compromised by CFIDS. YPWCs should be at the starting line along
with their healthy peers.
©1997 Michelle L. Banks
This article is distributed with
permission by The CFIDS Association of America. Some of the information
contained herein is intended to help young persons with CFIDS (YPWCs) make
informed decisions about their health and their education. However, The CFIDS
Association of America does not dispense medical or legal advice or endorse any
specific medical hypothesis or product and assumes no responsibility for any
treatment or activity undertaken by readers of Association- published material.