What a difference a year makes. Over the past few weeks, leading up to May 1 National College Decision Day, my Facebook feed was flooded with happy photos of high school seniors declaring what college they will attend. Last year, I was one of the proud parents posting photos of my son smiling, wearing a T-shirt emblazoned with the logo of the college he had chosen.
But just a year before that, my son could barely leave his bed because the effort to do so left him dizzy and exhausted. Night after night throughout his junior year, I scoured articles about applying for disability benefits and taking the GED, planning for a very different future than the one we'd imagined his freshman year of high school.
His remarkable turnaround senior year was due in part to his health improving. But much of his academic success can be attributed to the fact that, due to the COVID-19 pandemic, his high school went fully online during his senior year.
Online Learning May Democratize Education for Kids With Disabilities
“A lot of students loved having online education and access to hybrid and remote learning, especially students with chronic health conditions that have flare-ups where they might still be able to engage in classes from bed in their pajamas,” says Annie Tulkin, founder and director of Accessible College, a firm that supports students with physical disabilities and chronic health conditions in the transition from high school to college.
That was certainly true for my son. After 18 months of medical tests, consultations with multiple specialists, and hours of searching the internet for options, my son was diagnosed with post-orthostatic tachycardia syndrome (POTS) in his sophomore year of high school. On a good day, my son feels like he has a bad case of the flu, on a bad day (or week or month) he is basically bedbound.
In my son's sophomore year, we put a 504 plan in place which provided accommodations, including extra time to complete assignments and take tests and allow him to drink water and use the restroom as needed. He did well academically but continued to miss days and weeks with flare-ups which he spent bed-ridden. When he returned to class, he struggled to make up all the coursework he missed and keep up with current assignments. Early in his junior year, it became clear that he was too ill to attend classes.
At that point, we had to choose between several inadequate options. We opted for the Home and Hospital program which provided tutors two to three times a week in our home, with decidedly mixed results. Some instructors were highly skilled and able to teach him advanced physics and calculus so that he would be on track with his course work should he be able to return to in-person classes. Other tutors could not teach him the IB coursework, so he was behind in his curriculum in those subjects. He did well in the challenging classes and average in the others. He was also increasingly socially isolated because he didn't see his classmates in school and found it hard to maintain his friendships.
Although his school’s administration, guidance counselor, and several teachers were very sympathetic, it was difficult for the school to deal with his illness. “It’s so easy to force kids with complex medical conditions out of school, out of society,” says Megan Carmilani, founder of Long Covid Families, a nonprofit that provides support for individuals, caregivers, and children with long-term COVID symptoms.
How to Find the Resources Your Child Needs
Teens with invisible illnesses are often made further invisible by high schools that aren't adequately equipped to meet their needs. It is difficult for administrators and teachers working in a traditional school setting to provide the flexibility that many chronically ill teens need.
Gretchen Kelley lives in South Carolina and found it challenging to get meaningful accommodations when her daughter, now a senior in high school, was diagnosed with Lyme disease, chronic fatigue syndrome (CFS), and dysautonomia during her freshman year. "We went through all the versions of school accommodations, we did homebound study, we did hybrid days, where she would go to her school half the day and attend the other half of the day through South Carolina's state-approved virtual online school," Kelley says. In her junior year, Kelley's daughter attended the virtual online school full-time.
In September 2020, when my son started his senior year, his high school, like many others across the country, was fully online. His school was committed to delivering a rigorous IB education to students despite the challenges in doing so. Teachers embraced best practices and mastered new technology over the summer. That year, my son thrived. His absences plummeted and his grades soared.
“For some students who were chronically ill and immunocompromised, the pandemic offered a way they could be learning at home and access education as well as their peers in a way they hadn’t before,” notes Kim Knackstedt, a senior fellow at The Century Foundation and the first director of disability policy for the Biden-Harris administration.
Some teens on the higher end of the autism spectrum had similar experiences. "They got a break from the social stressors so there was a lot less anxiety. They were relieved from bullying and could just go on with their school work and go about their lives," says Stephanie Streb, a psychiatric nurse practitioner in Maryland who works with children, teens, and young adults.
Unfortunately, my son's positive experience with online learning was not universal. Disabled and chronically ill teens without access to broadband, laptops, or necessary assisted technology fared poorly, Knackstedt cautions. As support services were reduced or eliminated, autistic teens who relied on these services really struggled, Streb adds.
Here are some resources to help you get started:
It can be difficult to know where to look to determine what kind of accommodations your child can request at school. These resources are good places to start.
- The National Disability Rights Network protects the legal rights of individuals with disabilities. Each state has an NDRN member who provides legal advocacy and can advise parents about their teens rights via the state, which may be stronger than those provided at the federal level.
- The Kennedy Krieger Institute researches, cares for, and treats children with developmental and neurological challenges. They have issued guidance on how to support students with long COVID symptoms.
- Kidshealth has a factsheet for educators about chronic fatigue syndrome, with suggested accommodations for the student.
- Dysautonomia International provides a detailed list of accommodations for students with dysautonomia, including POTS.
When It Comes to Disability and Education, Flexibility Is Key
After two years of the pandemic, many parents and teens were delighted to return to traditional schooling. With the onset of long COVID, which experts suggest may affect between 10 to 42.6 percent of young people, flexibility may be more important than ever before. Schools will need to adapt to serve these young people. “People with disabilities have been advocating for remote options forever—since we’ve had the internet,” Tulkin says.
With the rise in long COVID, there may be enough voices calling for change that high schools will have to respond.
One challenge teens with complex medical conditions faced was that their illnesses were not included in the federal government’s definition of disability, used to enforce civil rights. Last July, the Office for Civil Rights in the Department of Education released guidance on long COVID and included it as a possible disability. This guidance will help teens with long COVID, as well those with chronic illnesses such as POTS or CFS, which are often linked to long COVID, advocate for equal access to education.
According to federal law, schools must provide “free and appropriate” education for students with disabilities in “the least restrictive environment (LRE).” Embracing and building upon the online learning schools quickly developed during the pandemic and providing a hybrid model would allow chronically ill teens to be educated in a less restrictive environment alongside their peers in the classroom and, when necessary, online.
To achieve this hybrid model as well as a more supportive environment requires education and advocacy. "Allow the disability community to guide you in how to provide for disabled teens," Carmilani says.
Disability advocates suggest training for all school staff on the Americans with Disabilities Act (ADA) as well as on implicit disability bias. Chronically ill teens and young adults should be appointed to school boards to drive the conversation about their needs. Families and teens need a better understanding of their rights under the law.
"In some cases, the pandemic allowed teachers to see the value of inclusion in a new way," Knackstedt says. "There is so much evidence that inclusion benefits everyone."
