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It seems like a simple decision. When someone with a disability needs help to perform their job, they should ask their employer for an accommodation. As long as their company has at least 15 employees, U.S. workers are legally entitled to make reasonable requests of their employers under the 1990 Americans with Disabilities Act (ADA). In practice, though, the decision to ask for workplace changes—whether a reduced schedule or something physical like a standing desk—is filled with challenges for many people. Perhaps they have been diagnosed with an “invisible” disability, like Parkinson’s disease or multiple sclerosis, and haven’t decided whether to tell their boss or co-workers. Maybe they worry their careers will be sidelined if they ask for help, or possibly feel uncomfortable receiving what they view as preferential treatment. “The research shows that many people interpret asking for an accommodation as a form of help-seeking,” says Mark Harniss, Ph.D., Director of the Center for Technology and Disability Studies at the University of Washington in Seattle. “‘If I’m asking for something, I will be seen as getting more than my co-workers.’”
To help people with disabilities better navigate the process of asking for workplace accommodations, Harniss has undertaken an “intervention development” study to create and test decision aids that can be used by people with disabilities, their families, caregivers, service providers, and vocational rehabilitation counselors. The study is part of a $4.3 million dollar, five-year grant awarded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) to the Center for Rehabilitation Outcomes Research (CROR) at the Shirley Ryan AbilityLab in Chicago, Illinois.
The work will be modeled on healthcare aids that help people make medical decisions such as whether to have surgery, or take a certain medication with serious side effects. It will use a four-step framework developed by British researchers Clare Chandler and Boyle Burckett who looked at the development of decision aids in the treatment of malaria. “Good aids do more than just a risk analysis,” Harniss says. “They get people to bring their values to the table. ‘What’s more important to me—that I live longer or that I have a higher quality of life for a shorter period of time?’ That’s where the decision incorporates your values and situation.”
‘What’s more important to me—that I live longer or that I have a higher quality of life for a shorter period of time?’ That’s where the decision incorporates your values and situation.
Mark Harniss, PhD
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Harniss’ research team is working with the ADA National Network, the Consortia of Administrators for Native American Rehabilitation, and the Washington state Division of Vocational Rehabilitation and Illinois Office of Rehabilitation Services, within the Department of Health and Human Services, to understand the needs of their clients. The team recently conducted four focus groups composed of people with disabilities, family and friends, caregivers, and vocational rehabilitation professionals. One group included vocational rehabilitation counselors who work with Indigenous People of the Americas, commonly known as Native Americans, an underserved group who may not be covered by the ADA because of tribal sovereignty. “People who work for tribe-owned businesses such as casinos fall into that category, although many tribes have their own regulations about the rights of people with disabilities”, Harniss says. His team is particularly interested in understanding how to develop decision aids that work for a broad range of people including those who live in rural versus urban areas and who come from diverse cultural backgrounds.
All participants in the focus groups were questioned about the main challenges they have encountered in the process of requesting accommodations. “We wanted to find out about the kind of decisions they get stuck on and where they make errors that result in less than optimal outcomes,” Harniss says. “We wanted to find out where they could use support through education.”
From the input they have gathered, Harniss’ team members will create logic models that mimic the process that someone would go through when thinking about an accommodation request. Then they will create a paper version of the decision-making tool. In the third year of the study, the team will add a database/website developer who will create a digital version. “By the end, we should have something very solid that could be tested in a larger trial,” Harniss says. The long-term goal is for people who use the guides to feel more confident when approaching their employers about accommodations and be more successful in their requests.
“Mark's work on disability self-disclosure is a critical aspect of our research on job accommodations,” says CROR Director Allen Heinemann, Ph.D. “Workers with disabilities won't get accommodations if they don't ask for them. His project helps advance our understanding of the decision-making process people go through when they want to work but fear uncertain consequences of disclosure. It will develop resources to help workers think through the issues and process.”
Workers with disabilities won't get accommodations if they don't ask for them. His project helps advance our understanding of the decision-making process people go through when they want to work but fear uncertain consequences of disclosure.
CROR Director Allen Heinemann, PhD