How IEPs can help your child with Lyme in school
By Carolyn Degnan
With schools back in session, your child with Lyme disease may need some extra accommodation to get through the school day/week. That is where an Individualized Education Plan (IEP) can come into play.
An IEP is a legal document developed for US public school students who are eligible for special education services. It is designed to ensure that a child with a disability identified under the law receives specialized instruction and related services. It can also apply to students with chronic illnesses such as Lyme disease.
Although each school district can have their own additional policies for an IEP, they all must follow the guidelines developed by the US Department of Education. You have the right to have your child apply for the accommodation and to have a meeting that includes your child’s teacher(s), school counselor, school administrator, etc. You can also bring a Lyme advocate to the meeting as well as a letter from your child’s physician outlining the need for accommodation and what he/she recommends.
Some ways an IEP can help students with Lyme disease
- Individualized learning objectives: The IEP will outline specific learning objectives that are tailored to the student’s needs, taking into consideration any limitations and challenges they might face due to their illness.
- Accommodations aid learning: These can range from extended test taking time, modified homework assignments, permission to take breaks, or someone to take notes for them during class. Such adjustments can help students complete their tasks without being overwhelmed and can continue to be modified as needed. For example, a student can be allowed to keep a sleeping bag in the classroom and lie down whenever they need to recline.
- Adaptive equipment and technology: If the illness affects the student’s mobility or ability to participate in a standard classroom, the IEP can include provisions for tools or technology to help them engage. This could also include special seating, voice recognition/note-taking software, noise-cancelling headphones, or sunglasses for light sensitive students.
- Flexible attendance: For students with chronic illnesses such as Lyme, consistent school attendance might be challenging. The IEP can include provisions for flexible attendance allowing the student to receive instruction at home or in a hospital when necessary. Online instruction can also be set up for the student to “attend” class from home.
- Health management in school: The IEP can outline specific medical needs the student has during school hours such as medication administration, periodic rest breaks, bathroom breaks without having to wait for permission to leave the classroom, and many more depending on the student’s needs.
- Communications: The student’s IEP can help foster communication between educators, parents and other professionals involved in the IEP process. It helps put everyone on the same page regarding the student’s health and education needs.
- Additional services: The team can identify other services that the student might need such as counseling, occupational therapy or physical therapy that might benefit the student.
- Regular Reviews: The IEP is not a static document. It is reviewed at least annually, and more often if necessary to make sure it stays relevant to the student’s needs. The document can be modified as many times as needed.
Most importantly, with an IEP in place, students with chronic illnesses are protected under the Individuals with Disabilities Education Act (IDEA). This means that they have a legal right to receive the services and accommodations outlined in their IEP. Do not let the school administration talk you into releasing them from the IEP process once they feel that the student is better. It should go with the student as long as they are in public education.
IEPs and 504 plans
For students who might not qualify for a full IEP but still need support due to their health conditions, a 504 Plan (named after Section 504 of the Rehabilitation Act) might be more appropriate. Like an IEP, a 504 Plan offers accommodations to help students access the general education curriculum, but it does not include any specialized instruction or additional services. It can, however, provide special accommodations in the classroom and for homework assignments.
Please note that both an IEP and a 504 Plan take time to get set up. As soon as you determine your child needs additional assistance, notify the school administration of your desire for an IEP meeting. It might also be useful to include the following chart to supplement your information on how Lyme and other tick-borne diseases can affect learning.
TABLE OF SYMPTOMS, SCHOOL EFFECTS AND RECOMMENDED ACCOMODATIONS
|Disability Symptom||School Effects||Helpful Accommodations|
|Cognitive impairment (fog): confusion/difficulty thinking, difficulty with concentration, forgetfulness, poor short-term memory, disorientation|| Concentration: attentional problems (distractibility) that make it difficult for the student to follow teacher instructions, "settle down to" or stay focused on a group or individual task, stay focused on completing a timed test, or manage multiple instructional steps and complete longer-term projects independently.|
Organization: The mental "fog" caused by the disease can cause the student to routinely forget to write down assignments, check assignments, or turn in completed work on assignments and tests.
Speech: occasional trouble "finding" words — can appear to be stuttering.
|Sensitivity to light and sound||The student’s sensitivities can make the ordinary stimuli of the school environment excruciating and unbearable|
|Joint and muscle pain, deep bone pain, migraine-type headaches||Trouble performing physical activities, concentrating, or completing school activities.|
|Sleep disturbance leading to cognitive issues and fatigue||Poor school attendance, chronic tardiness|
|Weakened immune response||Highly susceptible to viral infections; infections hit harder and last longer than in healthy children|
| Upset stomach (IBS)|
Shortness of breath
|Difficulty with physical activity and/or difficulty with bowels or bladder|
ABC’s Of Lyme brochure from the Lyme Disease Association.
When Your Child Has Lyme Disease: A Parent’s Survival Guide by Sandra Berenbaum and Dorothy Leland.
Carolyn Degnan is the Chief Operating Office of LymeDisease.org. Prior to joining LymeDisease.org, she was the Practice Manager for a large Lyme practice in the San Francisco Bay Area. One of her main responsibilities was the IEP/504 coordinator for patients in the practice. Having sat in on over 25 school IEP meetings, Carolyn developed a standard IEP/504 format she individualized for each patient. The chart above is part of that format.