A leveled field: Ensuring equitable education with invisible illness

This is part of a series about living with invisible illness for Cystic Fibrosis Awareness Month. Go here to read more.

Between exacerbations, appointments, and hospitalizations, I missed plenty of school because of cystic fibrosis (CF). Because of this, I felt I needed to work unreasonably harder than all other students just to stay in my teachers’ good graces.

Through both positive and negative experiences, I learned there were wiser methods that would keep my grades stable while also preventing burnout.

Following are actionable tips to guide you in becoming a strong advocate for your or your loved one’s equitable education.

Grade school

One of the most important things you can do for your education with CF is make a beeline for the teacher or a guidance counselor to request accommodations. Face-to-face time will awaken empathy that’s more difficult to access through email or phone communications. 

If applicable, this could also be a good time to request a meeting about creating something like an Individualized Education Program, a document outlining the needs of a student with disabilities. In meetings like this, it’s wise to: 

• initiate communication before problems happen
• include multiple members of the school staff for accountability
• document everything, even if staff are collecting their own notes
• distribute a written summary of CF, being sure to emphasize that complaints from the student should be taken seriously because invisible illness means they won’t always appear sick
• identify and get the contact information of the person in charge of implementing the accommodations
• follow up in writing, summarizing the discussion to ensure everyone is on the same page and the agreement is documented. 

Following are some examples of accommodations you might request:

• Flexible attendance policies: Attendance policies protect students’ ability to learn, but in the case of someone who’s chronically ill, they can impede learning. 
• Modified assignments: The workload may need to be adjusted due to fatigue, or some assignments such as group projects may need to be replaced due to hospitalizations. 
• Access to technology: Thanks to the COVID-19 pandemic, many teachers are now adept at including virtual options in their classrooms for when students are hospitalized.
• Health management plans: Detail processes like allowing for a student to leave class early for lunch to take pancreatic enzymes at the nurse’s office, how to handle intravenous medication administration, or what to do during medical emergencies.
• Restroom breaks: Inform teachers that students with CF may need extra restroom breaks due to gastrointestinal disturbances, nausea, and when coughing up mucus.
• Communication plans: Establish points of contact for each facet of the plan’s implementation and write out what types of issues warrant parent or guardian contact, versus allowing the student to handle the problem.

College

In college I expected to run into more difficulties than usual in balancing health and education, but I was pleasantly surprised to find the two universities I attended — one a state school and the other private — had disability offices whose task was to help people like me.

All schools with federal funding and most private schools have offices like these, but this may change with shifts in the United States government. I could not have graduated on time if not for these offices, so I consider it a must-have when assessing whether a college is a good match for someone with CF. 

The following accommodations were offered at both universities I attended, and could be worth inquiring about at your own school:

• A note-taker: If you have to miss classes due to CF, many colleges will hire or ask other students to take notes for you.

• Flexible attendance policies: In many colleges, the deans or teachers set their own policies. A disability office can speak to those staff on your behalf to advocate for flexibility, though.

• Replacement of a degree requirement: Some schools may offer degree requirements that are less dependent on class attendance. For example, my disability office advocated for me to replace my Latin language requirement with a Roman history class because it was difficult to learn a language during hospitalizations.

• Advocacy services: Many disability offices will speak to deans or teachers who are giving you a rough time, leveraging their official role in the school.

• A single-occupancy dorm: It’s no secret that the coughing and other symptoms caused by CF can inconvenience others’ sleep schedules. I received single-occupancy dorms at discounted rates.

Unlike grade school, in college you often choose your own classes. If you’re interested in taking a class in the future, consider dropping a teacher a note to inquire about their beliefs regarding accommodations. Some are less willing to budge on their policies and the disability offices can be limited in how much say they have in how a classroom is run, so asking ahead of time could save you trouble.

Know your rights

Not all education laws apply to all schools, and laws are subject to change, but it’s wise to know any relevant laws protecting education. They’re helpful not only for enforcement of rights, but also to have a framework of what accommodations are reasonable. 

To understand your or your loved one’s rights in education, visit these resources:

• U.S. Department of Education, Office for Civil Rights
• Americans with Disabilities Act
• U.S. Department of Education, Individuals with Disabilities Education Act

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.