Throughout the semester, my conversations with Hopkins medical professionals about the cognitive, emotional and physical impacts of long COVID often left me wondering about the future. What type of support beyond medical treatment exists for individuals whose daily lives continue to be disrupted by long COVID? How are these individuals maintaining employment or keeping up with the demands of school?
The impacts of long COVID are not limited to the personal lives and health of affected individuals, who often work reduced hours or are unable to work due to their condition. According to a Brookings report, which assessed the impact of long COVID on the American labor market, 1.6 million full-time equivalent workers could be out of work due to long COVID. At the time of the report, 10.6 million jobs were unfilled, meaning long COVID-related unemployment potentially accounted for 15 percent of the labor shortage.
Furthermore, the Household Pulse Survey, conducted by the Census Bureau to assess the prevalence of long COVID, found that around 16 million working-age Americans (those aged 18 to 65) have long COVID today, and 2 to 4 million of these Americans are out of work due to long COVID. The annual cost of these lost wages alone is around $170 billion a year.
In 2021, the U.S. Department of Health and Human Services (HHS) and the U.S. Department of Justice (DOJ) jointly issued guidance on how long COVID can be a disability under Titles II (state and local government) and III (public accommodations) of the Americans with Disabilities Act (ADA), section 504 of the Rehabilitation Act of 1973 and section 1557 of the Affordable Care Act.
This protects individuals struggling with impairments caused by long COVID from discrimination and allows qualified individuals to pursue relevant accommodations, referred to by the law as “reasonable modifications”.
The ADA provides its own definition of the term disability: “A physical or mental impairment that substantially limits one or more major life activities of such an individual; a record of such impairment; or being regarded as having such an impairment.”
This means that a person with long COVID is considered to have a disability if their condition or symptoms is a “physical or mental” impairment that “substantially limits” one or more major life activities.
The Department of Labor (DOL) has also issued guidance to workers with long COVID on their potential entitlement to workplace accommodations and how to pursue them.
Although there is no exhaustive list of workplace accommodations that can be requested, the DOL provides the following general categories: providing or modifying equipment or devices, part-time or modified work schedules, reassignment to a vacant position and/or adjusting or modifying examinations, training materials or policies. Employees can also find more information about the qualification of long COVID as a disability under the ADA and corresponding resources by visiting the DOL’s Office of Disability Employment Policy’s webpage.
In light of the fact that around 8 percent of working-age Americans currently have long COVID, the federal government should continue to inform employers that the ADA covers long COVID and recommend potential accommodations for their employees.
This initiative is supported by national research of the pathophysiology of long COVID. In Aug. 2022, the White House released a National Research Action Plan on Long Covid. Under this plan, Congress allocated $1.15 billion of National Institute of Health (NIH) funding to the national research study, RECOVER, which aims to understand how people recover from COVID-19 and why some people develop long COVID.
After discovering the federal government’s inclusion of long COVID under the ADA, I became interested in learning more about the resources available to Hopkins students struggling with long COVID.
In an email to The News-Letter, Terri Massie-Burrell, senior director of Student Disability Services (SDS), emphasized the office’s awareness of long COVID as a potential disability under the ADA and highlighted how SDS remains aware of these changes.
“We keep current with new developments in a number of ways, including membership in professional organizations (e.g. Association on Higher Education and Disability), collaborating with colleagues university-wide and cross-country, reading related academic journals and following the news,“ she wrote.
According to Massie-Burrell, as of Dec. 1, nine students have requested accommodations due to cognitive, emotional and physical impairments related to long COVID University-wide.
She shared that SDS recommends accommodations to students with disabilities on a case-by-case basis, considering their individual needs rather than basing recommendations solely on a particular diagnosis.
“As part of the accommodations request process, we ask students to meet and talk with us to describe how they are being impacted,“ she wrote. “Some examples of accommodations that can be helpful with symptoms that have been reported with Long COVID include things like extended time for exams and assignments, note-taking support and assistive technologies that assist with focus and attention.”
She outlined how SDS tries to keep students informed about their options. The office hosts an open house during first-year move-in, tabling events throughout the year and information sessions for faculty to facilitate connections.
SDS also works collaboratively with other Hopkins offices to refer students to SDS or, with the student’s approval, reach out to the office on their behalf. The office also aims to increase students’ awareness about SDS by sharing information about resources, programs and events via their Instagram, website and other channels, such as the Student Well-Being Blog that recently published a blog post about long COVID.
Finally, as a student who utilizes SDS myself, I am aware of how overwhelming the process of securing accommodations for your disability can be. I am also aware that many students face barriers to substantiating their need for accommodations due to certain disabilities, such as insufficient finances or access to medical providers who can substantiate their need for accommodations through assessments. I feel it is important to share information about the resources available.
Massie-Burrell listed a variety of resources available to students feeling overwhelmed by the accommodations request process. These include SDS coordinators, who respond to inquiries within a few days, and its office (in Shaffer Hall 101) which is open five days a week and has been staffed in-person since fall 2021, offering students the opportunity to drop in and talk with the staff.
The office also recognizes the aforementioned barriers to support students and works to help them overcome these barriers daily.
“SDS works with students who are in the process of getting documentation, but experience delays or roadblocks to set up provisional accommodations to bridge the gap and ensure that accommodations are in place as soon as possible,“ Massie-Burrell wrote. “Financial Aid, SOS, and ODI have also valued partners—we work with them in considering the intersectionality of disability and diversity of our student body. We also have a list of providers who offer neuropsychological assessments that we can provide to students, some of whom offer a sliding scale for payment.”
Overall, SDS encourages students to reach out for support when needed, especially when facing newer conditions like long COVID. Massie-Burrel directs students to contact SDS Homewood, visit the SDS website or email StudentDisabilityServices@jhu.edu. For dually enrolled students or to contact SDS at other schools, please see the list of University-wide SDS contacts. New students can begin the process of requesting accommodations using the SDS online initial form.
Deanna Rahman is a senior from Westchester, N.Y. majoring in Medicine, Science and the Humanities and minoring in Anthropology and Spanish for the Professions. “In for the Long Haul” aims to investigate and increase awareness about COVID-19’s impact on physical health, mental and emotional well-being and the functioning of society as a whole.