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As excited as Lily Rose Clifton is about to start college as a freshman at the University of Washington in a few weeks, she’s just as anxious to attend school in person after being confined to the hospital. house with long-term symptoms of Covid in the past 15 months.
Before falling ill, she was a healthy, active teenager, but everything changed after Covid left her struggling with, among other things, post-viral autoimmune dysautonomia that affects her nervous system causing dizziness, a high heart rate and rapid breathing when getting up or exerting energy quickly. She said she was also experiencing bouts of brain fog, officially diagnosed as dissociated syndrome, for which she is now taking medication in order to stay focused.
“I don’t learn the same way when I was healthy,” said Clifton, 18. “I feel like a whole different person now.”
She said she would likely contact the university’s disability services office to arrange accommodations for her new needs, such as extra time for class and for reading assignments. “I feel bad even asking for anything because I feel like it takes away other people who are in worse situations, but my mom tells me I shouldn’t feel this because my needs and my abilities have changed since Covid as well. “
As long-term Covid continues to linger in the thousands, young people suffering from its residual effects will no doubt return to schools and colleges in need of more support and accommodation, but with infrastructure for people with disabilities under. -funded and poorly understood at many colleges, schools will need to re-examine the systems they have in place for these students, disability experts said.
The total number of Covid cases in the United States has passed 40 million, according to the NBC News tally, and studies show that up to 10% of those who have had Covid can become long-haul travelers who show symptoms extended.
Some of these symptoms include difficulty breathing, shortness of breath, fatigue, heart palpitations and difficulty concentrating or “brain fog,” the Centers 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 severe long-term Covid cases could be considered a disability, thereby providing these people with federal protections and resources. The Department of Health and Human Services, the Department of Justice and the Department of Labor have released guidelines to help people experiencing the long-term effects of Covid navigate federal benefits, saying “an assessment individualized is needed to determine whether a person’s long-term Covid condition or one of its symptoms is substantially limiting a major life activity. “
The Department of Education has also extended protections to students whose long Covid dramatically limits a major life activity.
Despite a dominant narrative that children are not as affected by the disease, those with long Covid have a similar array of complaints as adults and this manifests in pediatric patients in specific ways, especially in the school setting. said Dr. Bradley Schlaggar, President and CEO of the Kennedy Krieger Institute and Professor of Neurology and Pediatrics at Johns Hopkins University.
“Fatigue, dizziness related to endurance, deconditioning, many complaints arise as young people return to educational institutions,” he said. “If you are inattentive or it takes a lot of energy to maintain your focus, you will not be able to be successful academically and this is especially the case as the academic demands increase.
Schlaggar added that if you add to these symptoms anxiety and endurance issues in which a young person does not recognize this performance compared to what they could previously do, it makes the experience worse, especially in environments intense like college.
On many college campuses, accessibility and accommodation were already a mixed bag when it comes to adequate services, but an increase in the number of people who can be considered disabled will exacerbate existing gaps, according to Jasmine Harris, professor at the ‘University of Pennsylvania. Carey Law School which focuses on disability law.
“If we do not take reasonable modifications and disability into account in higher education, we risk dropping programs, either voluntarily or unintentionally, which means we are losing the talent and skills of a growing population of young people. long-haul. “
In order to support long-haul travelers, the process for requesting reasonable accommodation at all levels, from the centralized office to the individual classroom instructor, must be clear and centralized, Harris said. “What is ‘reasonable’ can be subject to interpretation and individual instructors may unintentionally create barriers to accommodations for students with disabilities. “
Additionally, long-haul youth are likely to face skepticism given the tax and administrative deficits on campuses, which will lead to a disparity between who receives support. Those who have the time and money to document their disabilities and their effects on learning will be most successful, said Harris, adding that documentation should not be a barrier to access.
Some schools have already started the process of reviewing their infrastructure for people with disabilities.
Amanda Kraus, executive director of disability resources at the University of Arizona, said the school, which has more than 44,000 students, has already seen a significant increase in requests for accommodation related to Covid on the campus.
“The pandemic has really taught us that there is a need for more flexibility, compassion and universal design that will benefit not only people with disabilities but everyone, and I hope we keep some of the things that have been put in place to adapt to the pandemic, ”she said.
Educational institutions need to exercise a certain forethought, said Robert Dinerstein, director of the Disability Rights Law Clinic at American University Washington College of Law. Awareness and top-down training could be a way to prepare staff. Teachers should be trained to be more sensitive to disabilities and understand that the protocols will be different.
Mark Weber, a professor at DePaul University College of Law, said one of the biggest barriers to accommodation was a general attitude towards disability and a reluctance to offer it due to fear of cost or skepticism that someone really needs it.
“A lot of homes don’t necessarily cost anything or require as many additional resources as they just force people to change their conventional or standard operating procedures,” he said.
Despite her new medical impairments, Clifton has said she will continue to surpass herself and one day hopes her long Covid is behind her. Until then, she’s hoping for some empathy as she enters college.
“Every student’s best will probably be different now,” she said. “I want people to know that it is important to consider situations in everyone’s life and to understand that we are doing our best.”
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