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Navigating the School System with Chronic Illness

School can be an exceptionally challenging struggle for students with ME/CFS and FM. This May, in our monthly education meeting, guest speaker Doctor Lane Valum shared crucial strategies for how to work with, instead of against, the school system in getting students the help and resources they need for academic success. 

IEP and 504 Plans

American legislature creates two distinct forms of accommodation plans: the IEP plan (with the Individual Education System as the Canadian and United Kingdom equivalent) and the 504 plan. Both plans provide a formal, federally insured way for the school to provide accommodations, which are any support or relief the school offers that help students meet full expectations. The IEP plan requires both school-based testing to determine eligibility and specialized instruction for qualifying students. Since ME/CFS and FM students are frequently not directly impaired in their ability to understand social or academic areas, schools often deny IEP applications on the grounds that rule that no specialized instruction would be useful to the student. It is often best to assume IEP non-eligibility and go straight for the second option: the 504 plan is both faster and easier to get than the IEP plan, and is just as useful. Under the 504 plan, the student, parent(s), and relevant school personnel — which may include teachers, school counselors, and school administrators — examine the individual needs of the student and respond to those needs through a formal agreement.

These plans, whether an IEP or 504 plan, have endless possible accommodations that depend on how the group problem-solves to meet the student’s needs. Doctor Lane Valum strongly recommends that all students bring a copy of the CDC’s ME/CFS Facts Sheet for Education Professionals, a succinct two-page handout that briefly discusses ME/CFS and explains common student accommodations for the disease. Further, he recommends that students bring a physician’s note about their illness to the meeting wherever possible, even if the note only says there is an undiagnosed medical issue interfering with the student’s ability to perform well in school; these notes are not strictly necessary in many schools across America, but they make the process much easier.

Three common accommodations were discussed in the meeting. First, students can be offered extended deadlines on tests and assignments; students, parents, administrators, and teachers should determine precisely how much extension time is allowed during the IEP or 504 planning meeting. Second, peer or teacher notes can be offered to the student to reduce the cognitive exhaustion of multitasking between focusing on the lecture and summarizing the lecture in writing. Third, redundant work — drill work intended to promote skill mastery — may be reduced to conserve student energy. Concerning redundant work, Doctor Valum explained that the strategy is useful but “not required for learning for a number of students,” so if the student successfully demonstrates understanding of the concept, “let a couple weeks go by, and [if] they still have that skill set, we have evidence to say they don’t need twenty of those [drills] to do.”

Accommodation plans should be designed to fit changing circumstances; for instance, a student may be homebound for several months, with appropriate accommodations, then feel well enough to attend school for a few hours a day, with appropriate accommodations. To this end, multiple accommodation meetings are possible — fluid, adaptable plans can provide stronger, more appropriate levels of support than a plan that is created at the initial IEP or 504 meeting, then never changed. In these meetings, opportunities for social interaction should be emphasized wherever possible.

Other School Accommodations and Resources

Homebound instruction, also known as home-hospital instruction, is an additional accommodation schools can provide for students with ME/CFS and FM. In homebound instruction, a designated teacher gathers all the student’s work and brings it to the student’s home in set intervals — often weekly. After the teacher explains what is happening in the various classes, the student completes the work as their energy and illness allows. While homebound instruction may happen independent of an accommodation plan, they are frequently combined to legally ensure that the school will uphold their end of the plan.

Online classes are also a good option for students with ME/CFS; Doctor Valum praised their flexibility and usefulness, but cautioned that parents and students should check if the online courses offer more than the basic topics needed to graduate high school if the student intends to pursue postsecondary education.

Doctor Valum also briefly addressed resources for students of parents with ME/CFS or FM, as these students may have an unusually large workload at home that may interfere with their school performance. Parents in Utah are encouraged to contact the Utah Parent Center for support, while parents out of state are encouraged to search for similar state-level parent support organizations. Furthermore, school resources can help provide structure and support; for instance, after school homework programs may both give students a dedicated space to do their homework and let the home environment be reserved for other activities.

In closing, Doctor Valum advised all students and parents that “If you think you’ve got a need, just act on it. I think there’s a tendency to go back and see if we can’t make it work the way the school runs and try to fit our situation into their standard situation, but I would say waste little time if it’s clear it’s not going to fit…Start the conversation with whoever you’re comfortable with, asking that person to help navigate to [who you] really need to access to more formally pursue this…If you don’t get the answers you need, then start accessing any other creative resources until someone can help you connect with the people you need.”

The Bateman Horne Center holds monthly education meetings on the first Wednesday of each month. All patients and interested parties within the Salt Lake City area are invited to attend, without registration and free of charge, at our new address on 24 South 1100 East, Suite 205, Salt Lake City, UT. These sessions are also streamed live on Facebook and archived on our blog and YouTube channel.

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