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FA at School

Individual Education Plan for Students with FA Return to Index

OVERVIEW:

According to the U.S. Education Department, there are five million students with disabilities in our country. A federal law intended to assist these students has been enacted called the Individuals with Disabilities Education Act (IDEA).

Every child served by the Individuals with Disabilities Education Act (IDEA) is required to have an Individual Education Plan (IEP), which provides a blueprint for how the individual's education needs must be met. IEP teams usually consist of parents, administrators, the teacher and sometimes the student and outside experts.

The IDEA says that each eligible child must have a plan that lists program goals and the kinds of services and supports the child will need to reach those goals. Under IDEA there are two different plans: (1) the Individualized Family Service Plan (IFSP) for infants and toddlers (birth to 3-years-of-age) and (2) the Individualized Education Program (IEP) for older children. This report focuses on the IEP.

WHAT IS AN INDIVIDUALIZED EDUCATION PLAN (IEP)?

When your child reaches the age of 3 (or age 5 in some states), the program plan that is written is called the IEP. This plan talks about the special education needs of your child, and how these needs will be met. As a family member, you will be an important part of the team that works together to plan the educational program for your child. Be ready to work with your child's team. Any time you feel the plan is not helping your child, ask for a review of the plan. If you disagree with the educational program planned for your child, you have a right to a hearing. With a good plan as a map, you, your child, and your school team can work together to make your dream come true.

How long is this IEP in use? Does it get revised?

Your child’s IEP team must meet at least annually to review and revise the IEP as needed. In addition, you or your school staff may request that the IEP team reconvene at any time to review and revise the IEP.

What is my child’s role in the IEP process?

Your child should be involved in developing his or her IEP as appropriate. Involving the student in the development of the IEP can lead to increased skill in advocating for himself or herself, in planning future learning, and in discussing strategies and supports provided and/or needed. It increases independence and self-esteem.

IEP CONSIDERATIONS FOR A STUDENT WITH FRIEDREICH’S ATAXIA

A student with Friedreich’s Ataxia will require modifications and adaptations to his or her school day, homework and school environment to accommodate his or her limitations and to be successful in the general education curriculum.

A diagnosis of Friedreich's Ataxia with accompanying scoliosis and cardiomyopathy results in fine motor, gross motor and bilateral delays and limitations in endurance. Students with Friedreich’s Ataxia often need alternative means of written communication, which require instruction in keyboarding skills as an alternative to pencil and paper, and the availability of a desk-top word processor for classroom and homework.

REFERRAL FOR EVALUATION

As a parent, you may refer your child for an evaluation (occupational therapy, physical therapy, speech therapy, education, etc.) through your school district’s special education committee. Other professionals that work with your child can also refer him or her as needed. Outside reports or test results can be used but are not necessary.

The evaluation must be completed within thirty days of signed parental consent. Your committee will hold a meeting, to which you are invited, to review the recommendations by the evaluator(s). You may invite others to this meeting, including friends, advocates, caseworkers, or specialists knowledgeable about your child. For a child with Friedreich’s Ataxia, it is helpful to have medical personnel involved.  They can attend the meeting, be available by phone or send a written report to the committee prior to the meeting. It is helpful for the committee to be aware of the importance of certain therapies in maintaining the child’s current level of functioning.

Speech and language evaluation: Dysarthria is a progressive condition affecting speech intelligibility.

Physical therapy (PT) evaluation: Due to awkward gait, staggering, and incoordination, an evaluation is necessary. Difficulty with stops, starts and directional changes can be evidenced. Some school systems provide PT services for the development of therapeutic exercises for range of motion, strengthening, endurance and conditioning, neuromuscular re-education for balance, coordination, and posture.

Occupational therapy (OT): Some school districts only offer OT that will improve the student's ability to perform in a classroom setting -- for example, keyboarding instruction. Some states allow more thorough OT (and PT) services several times per week.

IMPLEMENTATION OF SERVICES

Services should begin in a timely fashion, following the committee meeting. In most states, implementation of services must occur within 30 days of receipt of the committee’s recommendation by the Board of Education. You need to be a strong advocate for your child to assure the evaluation is completed and recommended services are begun in compliance with state regulations. You may have an independent evaluation conducted and can also request an impartial hearing if you disagree with the recommendations, if the evaluation has not taken place within the time allotted by state regulations, if the recommended services have not begun within the allotted time, or if they do not conduct annual reviews as required by the state.

CURRICULUM/CLASSROOM ACCOMMODATIONS & OTHER MODIFICATIONS:

Physical Education. The school’s physical education (PE) program will eventually need to be tailored to your child’s capabilities. A student may be mainstreamed initially in PE. However, this situation should be monitored closely as the student’s physical aptitude deteriorates.

If the student has scoliosis associated with FA, it should be closely monitored by a medical professional due to its aggressiveness. A back brace may be prescribed for the scoliosis and is usually worn at least 18 hours per day. This back brace will limit the student’s range of motion and, consequently, PE activities. 

If possible, schedule mainstream PE class at the same time as the Special Ed PE class (middle and high school). This will provide flexibility for the PE teachers and your child to make decisions based on his or her ability to perform the daily physical activity. If gym uniforms are required, consider limiting the change of clothing to just a change of shirt. If the student has hypertrophic cardiomyopathy, a cardiologist be consulted regarding the safe level of physical activity.

Seating. Consider requesting preferential seating near the door for easier classroom entrance and exit. Also, consider permission to leave class 2 minutes early to avoid the crowded rush.

Lockers. Use a key lock rather than a combination lock. Combination locks are harder to manipulate. In a large school, request 2 lockers, conveniently located for the student’s activities at various times of the school day. Lockers should be located near the end of the row to avoid bumping by other students.

Backpacks. Get permission to carry to each class (in some school systems, backpacks can normally be used only to transport books between school and residence).

Changing classes. Request for the student’s schedule be arranged so as to reduce the distances between classrooms. Handrails must be used in school. The use of an elevator is the safer mode of transportation between floors for all students with FA and the only source of transportation for students using mobility devices. Make sure your school officials have prepared an emergency evacuation plan in case of fire or other emergency and that your child is aware of the safety procedure.

Lunch. Consider having the student bring lunch from home if carrying a tray is difficult or have a lunch buddy to help carry the tray if the student buys lunch at school.

Assignments. Most teachers will agree to shorten homework assignments to allow for physical limitations. Having the student do every other math problem, for example, can ensure that the student grasps the concepts without getting bogged down in the mechanics. The student can be given extended time to complete classroom assignments including tests. Teachers, teacher assistants, and parent volunteers can act as scribes for tests and other classroom assignments. Other students can be assigned to provide copies of their notes taken in class and to write homework assignments in the student’s assignment notebook.

Testing. When the testing format does not permit a scribe and extra time for the FA student, individual or small-group testing should be considered.

Transportation. If transportation by mainstream school bus is not manageable, consider requesting a special needs school bus provided through the county school system to transport the student from door to door.

OTHER RECOMMENDATIONS:

Peer Tutoring/Paired Working Arrangement (lab buddy) Extra assistance from teacher (Team taught class is preferable)
Reduced Pencil/Paper tasks
Basic skills class or study hall as an elective to give the student additional time
to complete assignments

MATERIALS:
Access to Keyboard/Word processor (e.g., AlphaSmart)
Calculator (if applicable)
Use of tape recorder to record rather than write out assignments
Request additional set of books to be issued for use at home so that text books are available in each class and at home to avoid carrying heavy books back and forth

TEACHER SUPPORTS:
Consultations with IEP team
Providing extra textbooks and desk top word processors
Assigning scribes, notetakers, activity partners
Providing extra time
Shortening assignments
Assigning convenient seating

STUDENT/PARENT RESPONSIBILITY:
Communicate information about change in medical condition and any additionally needed strategies.

Parents of younger children may want to prepare a short presentation and appear with your child before his or her class to tell classmates about Friedreich’s Ataxia. The presentation should be brief and general. Show and tell items such as an MRI (picture of the brain), ankle weights used for balance or the results of the EKG on graph paper are of interest to the other students.

REMINDER TO PARENTS:
PRIOR TO SCHOOL ENDING (SPRING)

Schedule the IEP meeting to prepare for the transition to the next grade in the fall. If your child is entering a new school, request that the IEP team assigned at the new school be present for the spring IEP. The new team will have an opportunity to discuss your child’s needs with the current IEP team who is familiar with your child’s needs.

PRIOR TO SCHOOL BEGINNING (FALL)

Arrange a walk-through at your child’s school with key members of the IEP team. This facilitates any last minute changes in schedule, lockers, etc., to accommodate education concerns.

In Summary:

As a parent, be pro-active. Meet and know the names and phone numbers of every teacher, counselor and member of the IEP team. Give each a copy of the NAF publication “Students with Friedreich’s Ataxia”. When making copies of this publication, Xerox a copy of your child’s photo on the first page.  In a larger school setting, this is extremely helpful to the teaching staff.

The IEP is a working document. If you as a parent, have any concerns, contact a member of the IEP team. Make sure your child is a SELF-ADVOCATE-- Mom and Dad can’t be there every minute to make sure everything is running smoothly. Self advocacy will be one of the most important skills we teach our children.

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Compiled by Raychel Bartek, October 98
Sources for this article:
US Department of Education Fairfax County, Virginia, Public School System
Individualized Education Plans for Keith Andrus (grades 6 & 7)
State of New York Education Department, Office of Special Education
Marilyn Downing, Special Education Evaluator; Erie County, New York

ADDITIONAL SUGGESTIONS submitted by Karen Kiernan:

1. Each school should have a special ed resource teacher who coordinates meetings and deals with student's issues, iep's, annual reviews etc. He/She is a good person to get to know and speak with on a regular basis. There are often new technologies available and sources of information that they can help you with or suggest.
2. The Muscular Dystrophy Association will come out to your child's school and do a presentation on FA either with your child as a helper or not. It is easiest to do this at the elementary school level as opposed to middle/high school. You may contact the MDA support office nearest you and speak with them and your school to schedule something. We did this with our 4th grader, Erin, and it worked great! The kids are a little more understanding and do not individually ask Erin why she walks funny.
3. There is another word processor which I have used recently called the  Dreamwriter.  It is a little more advanced than the AlphaSmart and performs more operations.  Still math is difficult on any word processor.
4. For students with nystagmus and difficulty reading because of eye movement. Some school systems (Montgomery County, MD) will have entire books blown up for students. I have found, especially in math, writing is difficult in small spaces. Teachers should be able to at least enlarge pages so writing space is ample.

by Karen Kiernan
mom of Erin, 9 w/FA
Rocky Hill Middle School, MD
Special Ed Instructional Assistant

Information provided is meant to be used as a guide to tailor your child’s IEP.

 


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