When someone experiences a stroke or a traumatic brain injury, they usually have little choice but to inform their employer because they need time off to rest and recover. But when people are diagnosed with a mental illness or a so-called invisible disease, such as Parkinson’s disease or multiple sclerosis, they have a decision to make. If their symptoms aren’t debilitating, they may choose to keep their condition to themselves even though they are legally entitled to ask for workplace accommodations such as a flexible schedule or a modified workstation. That right is guaranteed to them under the 1990 Americans with Disabilities Act (ADA), which applies to workplaces with 15 or more employees.
“Some people are hesitant about calling special attention to themselves. They don’t want to seem different. Or it could be that they think their request won’t be approved and they don’t want to annoy their employer,” says Robert Trierweiler, a vocational rehabilitation counselor at the Shirley Ryan AbilityLab Vocational Services Department, who works with employers to adapt their workplaces. “There’s an additional level of concern if their disability is progressive: ‘Will they quietly get rid of me during the next round of layoffs?’”
Kelly Weinschreider wasn’t thinking that far ahead in 2002 after she received the news that the hand tremors she had been experiencing were a symptom of early onset Parkinson’s disease. Previously, doctors had diagnosed the then 29-year-old with carpal tunnel syndrome and given her a hand brace. Despite the shock, there was an encouraging development. The medication prescribed by her movement disorder specialist was controlling the tremors and alleviating her muscle stiffness. Weinschreider was able to continue working as a packaging engineer for Kraft Foods in suburban Chicago. She didn’t tell anyone at the office about her Parkinson’s for more than five years until her hands were visibly trembling when she was flipping slides during a presentation. Even then she only told her boss because she wanted his help with the slides.
“My mindset at the time was, ‘This is not going to get the best of me,’” Weinschreider recalls. “I kind of went with my gut. I didn’t know anyone else who had a chronic disease, and I was just going to go on with my life.” In retrospect, she wishes that she had had more resources to draw on when considering whether to disclose her diagnosis to her employer. “If there was something that helped people understand the ramifications of disclosing or the potential workplace modifications that could be made, that would have been tremendous. I would have been a lot better off.”
Some people are hesitant about calling special attention to themselves. They don’t want to seem different. Or it could be that they think their request won’t be approved and they don’t want to annoy their employer.Shirley Ryan AbilityLab Vocational Rehabilitation Counselor Robert Trierweiler
The Center for Rehabilitation Outcomes Research (CROR) at the Shirley Ryan AbilityLab in Chicago is helping to fill that void. A CROR interventional development study is developing “decision aids” to be used by people with disabilities and others that will help them think through the tradeoffs between disclosing and not disclosing a disability. The work is part of a larger five-year grant by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to identify and remove obstacles that keep people with disabilities from finding jobs or staying employed. (See more here: https://www.sralab.org/node/88405). Although the ADA was passed 30 years ago, little progress has been made in the area of employment: only about 10 percent of people with disabilities who want to work actually hold jobs, which suggests to disability researchers that much more needs to be done.
The use of decision-support interventions to help patients make choices in medical treatment goes back several decades and has largely been centered in the U.S., U.K. and Canada. The decision aids or “shared decision-making programs” were developed in various contexts as an adjunct to counseling so that patients could learn about risk/benefit tradeoffs, consider their personal values and participate in decision-making with their physicians. A key aim was to modify patients’ unrealistic expectations of a good outcome by presenting specific probability information about both good and bad potential consequences. Decision aids are found in various forms, including interactive videos, audio tapes, workbooks, pamphlets and group presentations. They don’t include passive consent materials or interventions designed to guide a patient toward a recommended outcome.
Decision aids have been widely used in decisions about end-of-life care, helping people decide at what point to end treatment and go into a hospice setting. They also have played a role in cancer treatment decisions ranging from whether women at high-risk of developing breast cancer should take the chemotherapy drug tamoxifen as a preventative to whether men should undergo prostate-specific antigen blood testing for prostate cancer. “Studies evaluating cancer-related decision aids demonstrate that they are acceptable to patients and help those who are uncertain at baseline to make choices,” according to researchers at the Loeb Health Research Institute in Ottawa, Ontario, who published their work in the Journal of the National Cancer Institute Monographs in 1999. “They also increase the likelihood that choices are based on better knowledge, realistic expectations of outcomes, and personal values.”
Similarly, a meta-analysis of 17 studies looking at the effect of decision aids on choices related to treatments or screening options found them to be beneficial to patients. The decision aids improved patients’ knowledge about treatment options, reduced the stress related to making a decision and prompted patients to be more active in their care plans, all without increasing their anxiety levels, according to results of a 1999 study published in the British Medical Journal.
Mark Harniss, the principal investigator on the CROR decision aid study, saw significant parallels between making an informed decision about a medical treatment and deciding to disclose a medical condition to an employer. “It’s a way to bring competing perspectives into the open so they can be discussed,” says Harniss, Ph.D., Director of the Center for Technology and Disability Studies at the University of Washington in Seattle. “In the reasonable accommodation space, the decision to request is complicated and there are reasonable reasons like stigma that might make people hesitate about requesting them. I hope we can help people navigate that process with more confidence and less stress.”
In the reasonable accommodation space, the decision to request is complicated and there are reasonable reasons like stigma that might make people hesitate about requesting them. I hope we can help people navigate that process with more confidence and less stress.Mark Harniss, PhD