As excited as Lily Rose Clifton is about starting college as a freshman at the University of Washington in a few weeks, she’s just as anxious about attending school in person after being homebound with long-haul COVID-19 symptoms for the last 15 months.
Before getting sick, she was a healthy active teenager but that all flipped after COVID-19 left her struggling with, among other things, post-viral autoimmune dysautonomia which affects her nervous system triggering dizziness, elevated heart rate, and rapid breathing when she stands up or exerts energy quickly. She said she also feels bouts of brain fog, officially diagnosed as dissociate syndrome, which she now takes medication for in order to keep focus.
“I don't learn the same way from when I was healthy,” Clifton, 18, said. “I feel like I’m a totally different person now.”
She said she will likely reach out to the university’s disability services office to arrange some accommodation for her new needs like extra time to get to class and for reading assignments. “I feel bad even asking for anything because I feel like it takes away from other people who are in worse situations, but my mom tells me I shouldn’t feel that way because my needs and abilities have also changed since Covid.”
As long-term COVID-19 continues to linger in thousands, young people suffering from its residual effects will undoubtedly return to schools and colleges needing more support and accommodation, but with disability infrastructure being underfunded and not widely understood in many colleges, schools will need to re-examine systems they have in place for these students, disability experts said.
Total COVID-19 cases in the United States have exceeded 40 million, according to NBC News' tally, and studies show that as much as 10 percent of those who had COVID-19 may become long-haulers who carry prolonged symptoms.
Some of these symptoms include difficulty breathing, shortness of breath, fatigue, heart palpitations, and difficulty concentrating or “brain fog,” theCenters for Disease Control and Prevention reported, adding that these symptoms tend to get worse after physical or mental activities.
President Joe Biden announced in July that serious long-term COVID-19 cases could qualify as a disability, making federal protections and resources available to those people. The Health and Human Services Department, the Justice Department and the Labor Department released guidelines to help individuals experiencing effects of long-term COVID-19 navigate federal benefits, saying "individualized assessment is necessary to determine whether a person’s long Covid condition or any of its symptoms substantially limits a major life activity."
The Education Department has also extended protections to students whose long COVID-19 substantially limits a major life activity.
Despite a prevailing narrative that children aren't as affected by the illness, those with long Covid have a similar array of complaints that adults have and it's manifesting in pediatric patients in specific ways, especially in the school setting, said Dr. Bradley Schlaggar, president and CEO of Kennedy Krieger Institute and a professor of neurology and pediatrics at Johns Hopkins University.
“Fatigue, dizziness issues with endurance, deconditioning, a lot of the complaints have been coming up as young people get back into education settings,” he said. “If you are inattentive or it takes a lot of energy to maintain your attention, you're not going to be able to perform academically and that's especially the case as the academic demands increase.”
Schlaggar added that if you layer on top of those symptoms anxiety and endurance issues in which a young person doesn’t recognize this performance compared to what they could do before, that compounds the experience especially in intense environments like college.
On many college campuses, accessibility and accommodation were already a mixed bag with respect to adequate services, but an increase in the number of people who may qualify as disabled will exacerbate any existing deficiencies, according to Jasmine Harris, a professor at the University of Pennsylvania Carey Law School who focuses on disability law.
“If we do not address reasonable modifications and disability in higher ed, we risk students dropping out of programs, voluntarily or involuntarily, which means we lose the talent and skills of a growing population of young long-haulers.”
In order to support long-haulers, there needs to be clarity and centralization regarding the process of requesting reasonable accommodations at all levels, from the centralized office to the individual classroom instructor, Harris said. “What's "reasonable" can be subject to interpretation and individual instructors may unintentionally create barriers to accommodations for students with disabilities.”
In addition, young long-haulers will likely face skepticism given fiscal and administrative shortfalls on campuses, leading to a disparity of who receives support. Those who have the time and money to document their impairments and their effect on learning will be the most successful, Harris said, adding that documentation should not be a barrier to access.
Some schools have already started the process of re-examining their disability infrastructure.
Amanda Kraus, the executive director of disability resources at the University of Arizona, said the school, which has over 44,000 students, has already seen a significant increase in COVID-19-related requests for accommodations on campus.
“The pandemic has really taught us that there is a need for more flexibility, compassion and a universal design that will benefit not just those with disabilities but everyone, and my hope is that we retain some of that the things that were put in place to adapt to the pandemic,” she said.
There does need to be a degree of forethought by educational institutions, said Robert Dinerstein, director of the Disability Rights Law Clinic at American University Washington College of Law. Outreach and training from the top down could be one way to prepare staff. Professors should be trained to be more attuned to disabilities and understand that protocols will be different.
Mark Weber, a professor at DePaul University College of Law, said one of the largest impediments to accommodations has been a general attitude toward disability and an unwillingness to offer it because of a fear of cost or skepticism that someone really needs it.
“A large number of accommodations don't necessarily cost anything or demand additional resources so much as just require people to change their conventional or standard operating procedures,” he said.
Despite her new medical impairments, Clifton said she will continue to push herself and hopes one day that her long COVID-19 is behind her. Until then, she hopes for some empathy as she starts college.
“Every student’s best will probably look different now,” she said. “I want people to know that it’s important to consider everyone's life situations and understand that we’re doing the best we can.”
This story first appeared on NBCNews.com.