Millions suffer from 'long COVID.' U.S. disability law may protect them from discrimination

When the Americans with Disabilities Act became law, none of its sponsors could have predicted that 31 years later it could be invoked to protect people with long-haul COVID from discrimination.

But as people with post-acute COVID syndrome, or “long COVID,” try to go back to work after their illness, the limitations they experience from COVID’s long-term effects may rise to the level of a disability and entitle them to special arrangements to do their jobs.   

“We’re bringing agencies together to make sure Americans with long COVID who have a disability have access to the rights and resources that are due under the disability law,” President Joe Biden said in July, when he marked the anniversary of the federal law. He said the rights of people with long COVID could include accommodations in the workplace, schools and health care.

More  than 11 million people nationwide are living with long COVID, based on estimates that symptoms persist — or new ones develop — more than six months after infection in 10% to 30% of those infected.

That would be more than 318,000 people in New Jersey, according to estimates by the American Academy for Physical Medicine and Rehabilitation — numbers that continue to grow as more people are infected.

Their symptoms can include shortness of breath and respiratory problems, muscle aches, brain fog, anxiety, depression, fatigue — especially after exertion — and a host of other conditions described by the federal Centers for Disease Control and Prevention. Whether these symptoms are temporary or will develop into chronic conditions is the subject of research funded by the National Institutes of Health.

People who are hospitalized appear more likely to develop long COVID, but even some who had asymptomatic cases of the disease may later develop residual effects.  

A recent study published in the Lancet of more than 1,000 patients from the pandemic’s early days at a hospital in Wuhan, China, found that half of patients whose illness was severe enough to require hospitalization had one symptom that persisted a year later. The most common were breathing difficulties, fatigue and muscle weakness, anxiety, depression, sleep problems and loss of smell.

“We know these are symptoms that can persist for weeks or months and may range from mild to incapacitating,” Taryn Mackenzie Williams, the U.S. assistant secretary of labor for disability employment policy, said of long COVID. She heads the department's efforts to apply the protections of federal disability law to long COVID.

For employees or potential employees with long COVID, symptoms may affect their ability to do their jobs. In many cases, even if they don’t think of themselves as disabled, they are entitled to workplace arrangements that accommodate their limitations, said Tracie DeFreitas, a consultant and ADA specialist for the Job Accommodation Network, which is funded by the Department of Labor.

For example, an employee with a long-COVID disability can ask for a modified or part-time schedule, rest periods during their shift, reassignment to a vacant position or equipment that makes it easier to do their essential tasks.

For instance, a nurse returning to work after COVID had caused damage to her lungs could work fewer hours or be reassigned to a job that involves more time at a desk and less at the bedside.

Or a worker on a production line who experiences fatigue could be allowed rest periods and given a stool to sit on or lean against rather than standing the whole shift, said DeFreitas.

“Each situation is individual,” she said. “When it comes to long COVID or any chronic condition, the right accommodation will depend on an individual’s symptoms, limitations, job tasks and individual needs.”

The employer is not required to give the employee exactly what they ask for, as long as the accommodation offered is effective, under federal disabilities law. Nor are employers expected to eliminate the job’s essential functions, lower production standards, or do anything that causes them “undue hardship.”

The goal is to enable a person to do the essential tasks of their job, DeFreitas said, adding, “There are many ways to do that.”

The Job Accommodation Network provides free, confidential advice to workers and their employers about various modifications that can be considered.

A lot has been learned about flexibility in the workplace from changes brought about by the pandemic, including telework.

“We have all learned how to adapt and be flexible,” said DeFreitas. Widespread innovations such as working from home, remote conferencing and flexible schedules help everyone, but may be especially useful for those with long COVID, she said.

The Labor Department and other federal agencies have assembled materials to explain the criteria for determining whether long COVID is a disability protected by federal law, how to ask an employer for workplace accommodations, and considerations for employers, said Williams, the assistant secretary.

Under the civil rights law, if a person’s long-COVID symptoms “substantially limit” a major life activity such as sleeping, breathing, thinking, concentrating or working, it is considered a disability that entitles the person to protection against discrimination. There is no standard definition; each case must be assessed individually.

The employee must ask for a workplace accommodation. While there’s no set form to do so, they should say they are asking because of a medical condition. In response, the employer can ask for information related to the disability, but not for general, or unrelated, medical information.            

The law applies to employers with 15 or more employees. The accommodations can be temporary, and discontinued when the symptoms go away.

Lindy Washburn is a senior health care reporter for NorthJersey.com. To keep up-to-date about how changes in health care affect you and your family, please subscribe or activate your digital account today.

Email: washburn@northjersey.com 

Twitter: @lindywa