Navigating Educational Accommodations for a Teen or Young Adult with Chronic Illness
- Kim Moy
- 11 minutes ago
- 8 min read
By Erica Nybro
It’s almost back-to-school time in many households, and this can be especially stressful for those supporting teens and young adults with chronic illness. In the 3 years since my now 19-year-old daughter was diagnosed with ME, POTS, and Ehlers-Danlos Syndrome, we have navigated several school scenarios: in-person public school, online public school, part-time community college, and now preparing to attend a 4-year university.
Here are some of the lessons we’ve learned along the way.
Junior Year – In-person high school
When my daughter Lydia was diagnosed in the spring of 2023, she was in the AP Scholars program and was an All-County athlete at our local public high school in Montgomery County, Maryland. Her health declined the summer of 2023, but we were optimistic that she could handle her heavy junior-year course load with some minor accommodations.
The first thing we did was to request a 504 plan.
A 504 plan is a legally binding agreement under Section 504 of the Rehabilitation Act, which ensures a student with a physical or mental disability has equal access to education. It allows for accommodations to remove barriers in the general education setting. For example, a student who is capable of the coursework in general education classes but needs support taking notes or the option to take a course virtually would be accommodated with a 504 plan.
An IEP (individualized educational plan) is protected under the federal Individuals with Disabilities Education Act (IDEA). To be eligible for an IEP, students must be evaluated and meet the criteria for at least one of 13 conditions, which include learning disabilities, speech impairment, autism spectrum disorder, severe emotional/mental health conditions, visual or hearing impairment, and many other “health impairments”. ME and other chronic illnesses can qualify in this category, especially in severe cases. An IEP often includes special education services outside of the general education setting.
Examples of accommodations include:
Flexible Attendance: Modified schedules, late arrival, or rest days between instructional days to manage profound fatigue.
Workload Adjustments: Reduced assignments, elimination of nonessential projects, and alternative testing formats.
Processing and Memory Support: Extra time for tests and assignments, removal of strict time limits, and access to recorded lectures or written notes due to brain fog.
Physical Rest Breaks: Permission to visit the school nurse for scheduled rest periods or use elevators to limit physical exertion.
Exemptions from Physical Stress: Full or partial exemption from physical education and avoidance of overstimulating environments.
In Lydia’s first personalized 504 plan, we ensured that she would not be penalized for absences and could get extensions on assignments when she was sick. As Lydia’s health deteriorated, we made adjustments to the plan. Because her symptoms were so much worse in the morning, we worked with her guidance counselor to move her electives and easier classes to the mornings so she could use her limited energy and focus for her harder classes in the afternoons. She was also able to drop a couple of classes because she had enough credits to stay on track without them.
Senior Year – Transition to Online School By senior year, Lydia’s health had deteriorated further. She was able to attend school less than half of the time that fall. Her AP teachers indicated that she would not be able to pass with so many absences, but AP classes were not offered virtually. They repeatedly asked, “When will she be better?” or “Can she commit to coming in every Monday, Wednesday, and Friday?” While these questions seemed reasonable to them, for anyone who understands ME, they are not helpful. Her counselor pushed us towards a county-wide online program of courses that would meet graduation requirements but were not the level of coursework she was eligible for and capable of academically. We increasingly got the feeling that the high school was looking to move us out - they simply did not know how to deal with her case.
As mom and caregiver, for me one of the most triggering elements of this period was the constant barrage of automated communication from the school about Lydia’s absences. Even though her extended absences were approved medically, we continued to get increasingly threatening and legalistic notices about her attendance. It felt like no one was listening and that the system was not equipped to handle chronically ill students.
In the fall of 2024, we hired an educational advocate to help us negotiate additional options. She drafted a letter for me to send to the superintendent and his county-level 504 coordinator. This prompted an immediate meeting with Lydia’s school administrators and county-level leadership. While we did not get everything we hoped for, we were able to agree to a plan that met Lydia’s highest priority needs:
That she graduate on time with her class;
That she be allowed to participate in her local high school’s senior year activities including supporting her softball team as manager, going to prom, and walking at graduation even though she would no longer be taking classes at her local high school; and
That she receive her AP Scholar's diploma even though she would not be able to complete her final required AP courses since they were not offered online.
And an important win for me was that the assistant principal was able to immediately remove our names from the school’s auto-generated absence communication.
In retrospect, had this happened earlier in Lydia’s high school career, we would certainly have fought for more options and more support. Online/asynchronous courses met a minimum requirement, but they were not educationally, socially, or emotionally fulfilling or supportive. But by December of her senior year, we decided we were close enough to graduation that we would take the path of least resistance.
Senior year also included college applications, in the hopes that Lydia’s health would stabilize enough that she could consider attending university as a full-time residential student at some point. We prioritized schools with, or near great medical systems, lots of health support on campus, and flexible/accessible disability offices with experience with her conditions.
This meant disqualifying some of her dream schools that had huge campuses requiring a lot of walking, campuses in college towns without access to a good hospital, and schools in hot and humid climates. During one college visit, a tour guide mentioned that all freshmen are assigned a doctor at the student health center that follows them for all 4 years and coordinates any needed care. Lydia, her sister, and I looked at each other with big eyes and said, “This is the place.”
Lydia did graduate from high school on time, somewhat miraculously, after being hospitalized for almost a month her last semester. Her flexible online course schedule allowed her to catch up at the end when her energy returned. She walked with her class at graduation. She also made the wise decision to defer college enrollment for a year to give herself time to regroup and recover after two long years of mental and physical exhaustion.
Gap Year and Part-time Community College
During her gap year, Lydia took some classes at our local community college. She chose classes that met in the afternoon and felt those would be easy to manage.
One lesson learned here was that without advance communication about her disabilities, one of her professors penalized her for missed classes. The professor’s rule was that absences would be excused if you alerted her before class time. However, when Lydia is having a terrible day, she is unable to function well enough to even open her laptop and write a coherent email. While it was appealing to not have to disclose her disability in this “easy” environment, it would have been protective to have an accommodation on the record.
Coming Soon… Full-time Residential University
This summer, we are preparing for Lydia to start university at a wonderful school 6 hours away from home (the one with the awesome health center doctors!). We are hopeful but also prepared for challenges. We are trying to set her up for success and put as many supports in place as we can. These include:
Housing accommodations: a single dorm room near the main dining hall and health center. This will help protect her sleep, her infection control, and exposure to light and sound, and make it easy to eat and seek medical support.
Academic accommodations: priority registration so she can avoid early morning classes, additional time on assignments as needed, optional virtual attendance at class (or watching a lecture via video later) when she’s sick, and the possibility of a lighter course load if needed.
Arranging for continuation of medical care from her local team virtually, and establishing communication between her local team, her university health center, and the excellent university hospital.
Summary Takeaways
While these examples are specific to a teenager with ME, many of the major takeaways are relevant for any of us navigating systems for a loved one with a chronic illness:
· Plan for your worst day. You may not need all the accommodations you request, but it’s much harder to put them in place once you are struggling.
· Identify your top priorities. The educational system can feel very unfair when it comes to chronic illness limitations, and you won’t have the energy to fight for everything. You may have to make sacrifices, so be clear about your non-negotiables.
· Prepare to explain your chronic illness. While lots of educators and administrators have heard of ME and other chronic illnesses, most don’t understand the constellation of symptoms and their unpredictability. I have several good descriptions bookmarked on my computer for easy access (like Kim’s blog post on explaining ME to others).
· Don’t hesitate to escalate your requests or call in extra support. Many of the staff in direct contact with students do not have the authority to respond to special requests, but direct communication to principals, superintendents, and university disability offices are taken more seriously.
· Document as much as you can. Should you need to escalate your concerns, you’ll want a record of your email communication, summaries of any phone or in-person conversations, dates of absences/sickness/assignments, and letters from health care providers.
· Trust yourself. You know your loved one, and their chronic illness, better than anyone in the school system. Be open to alternative solutions, but ultimately, trust your instincts.
A few final thoughts
These lessons learned are mostly administrative and process-oriented. But underlying it all, the toughest part is accepting the new identity of being a chronically ill young adult, and the parent of that child. The grief involved in letting go of traditional paths and expected achievements can be gut-wrenching for the chronically ill person and their loved ones. I lean heavily on a therapist and my closest friends to sort through my own anger, fear, and sadness so that I have clarity when I have to go into “business mode” to do this administrative and advocacy work.
Lastly, I need to acknowledge that despite these challenges, we try to appreciate the level of functioning Lydia has, and take advantage of the opportunities she can pursue, even if they are modified. As her primary caregiver, I am incredibly grateful that she is exceptionally mature and self-aware. She has handled some of these tough moments with more grace and wisdom than I am able to muster. She has adapted, and continues to adapt, which inspires and energizes me as I work to support her.
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