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A six-year project at the Center for Rehabilitation Outcomes Research (CROR) at Shirley Ryan AbilityLab has produced important findings that could help people with disabilities find work or hold on to their current jobs. The work, funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), looked at a wide variety of issues, including how to help people with Parkinson’s disease maintain employment and whether virtual therapy could help those with chronic pain control their discomfort and avoid downtime at work.
One project created a decision aid to help people with disabilities decide if and how to request reasonable job accommodations while another surveyed employers and employees about their experiences with the accommodations process. “We gained important insights into how disability affects employment,” says CROR Director Allen Heinemann, PhD, principal investigator for the grant. “I still remember our longtime Rehabilitation Institute of Chicago (now Shirley Ryan AbilityLab) President and CEO, Dr. Henry Betts, saying ‘It doesn’t matter how good we are at helping people with rehabilitation. The end goal is to get them back home and back to work.’” Heinemann added: “I’m really pleased with the number of publications we have generated based on our research into employment and people with disabilities, and the size of the audience we reached with our findings through conferences and the CROR website.”
The projects, which started before the Covid pandemic, occurred during rising levels of employment for people with disabilities, raising hopes among disability advocates that the new historic high levels of employment can be maintained going forward.
Reducing Chronic Pain with Virtual Therapy
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One of the research projects funded by the NIDILRR grant found that people with chronic pain and multiple sclerosis, spinal cord or brain injury and limb loss experienced a statistically significant and clinically meaningful reduction in pain levels after receiving cognitive behavioral therapy (CBT) delivered over the phone for eight weeks. “People with disabilities of all types who were experiencing chronic pain benefited from the self-management tools we taught them and were eager to apply those to their pain and their lives,” says Dawn Ehde, PhD, a clinical psychologist and researcher at the University of Washington in Seattle who headed the project. Ehde says the benefits to participants were so clear that the next step is to get the word out to the rehabilitation community.
“What we heard from our participants was ‘This wasn’t even offered to me.’ We need to give providers on the front lines—physicians, nurses, occupational and physical therapists—information and tools about where to refer patients with pain. A range of mental health providers can learn to deliver this therapy. It could be one-to-one therapy or even providing tools that people can use on their own,” Ehde says.
Helping People with Parkinson’s Stay Employed
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Another study looked at whether offering vocational rehabilitation counseling to those recently diagnosed with Parkinson’s disease could help people maintain their employment. Many people are diagnosed with the degenerative neurological disorder in their 60s, their highest earning years. The job of vocational rehabilitation counselors is to provide information and advice about finding employment and requesting reasonable accommodations under the 1990 Americans with Disabilities Act (ADA). But their services are not typically offered to people with Parkinson’s, who often continue to work for extended periods after their diagnoses.
The research team recruited 60 people who had been diagnosed with Parkinson’s in the last five years and wanted to keep working. Of them, 45 were still involved when data collection ended. “Ten of them used the services of a vocational rehabilitation counselor, and of those who used the services early, the vast majority (six out of seven), were still employed at the end of the study,” notes Miriam Rafferty, PhD, a research scientist at the Shirley Ryan AbilityLab, who headed the work. “People who used the service in the first year had more proactive questions about accommodations and disclosure,” Rafferty says. The remaining three sought assistance around the two-year mark and their questions were more about how to leave their jobs gracefully or how to transition to long-term disability from short-term.
Although the small sample size makes it difficult to draw a cause-and-effect conclusion, Rafferty says the study yielded a clear result: “People can use vocational rehabilitation proactively to assist them with job retention. Parkinson’s is a degenerative condition so we know people will leave employment eventually because they will either retire or have a crisis,” Rafferty says. “We want to help as many as possible stay in control of the decision of when to leave their job.”
Creating a Decision Aid for Requesting Accommodations
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Although the Americans with Disabilities Act (ADA) passed more than 30 years ago, few people outside the rehabilitation and employment law field are aware of its processes. Mark Harniss, PhD, a rehabilitation researcher at the University of Washington in Seattle wanted to create a decision guide that would help people with disabilities decide whether and how to request reasonable accommodations at their workplaces. “It’s not a simple decision of ‘How do I ask for an accommodation?’” says Harniss. “The decision to request an accommodation is being made in the context of stigma and discrimination that people with disabilities face in employment settings. Even though people with disabilities have the right to an accommodation under the ADA, they may need to weigh the possible negative outcomes of making that request within their specific workplace. That’s our high-level finding.”
The researchers developed a decision aid to educate people about their rights and the ADA process and then asked 20 people to use it. The feedback the researchers received was generally positive. Users liked having the information centralized in one place but they still felt the legal language involved was complicated. “They said, ‘It’s a lot.’ Requesting reasonable accommodations requires additional labor on the part of people with disabilities that people without them don’t have to perform,” says Harniss.
Harniss and his team are working to simplify the guide’s language and shorten it to reduce the effort involved by those using it. They plan to test it further and they hope the redesigned guide can be helpful to college and university students who are trying to understand their rights under the ADA. They also plan to offer it to the ADA National Network, a network of federally funded regional ADA Centers around the country, which are often the first stop for people with disabilities who are looking for guidance.
Surveying Workers and Employers about Reasonable Accommodations
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In yet another project, Heinemann and his research team conducted a national survey of people with physical disabilities. Fifteen hundred survey respondents reported having worked after their disability and 500 people had never worked after their disability. The researchers hoped to gain insights into facilitators and barriers to employment after disability. They found that older age, decreased ability to pay bills on time and the use of assistive devices were associated with lower likelihood of employment after disability.
When the researchers focused on data from survey respondents who worked after their disabilities, they found several factors that were important in promoting job retention (keeping a job for four or more years). People who reported fatigue or emotional problems, who had opportunities for advancement and who received job accommodations were more likely to maintain employment. Shorter job retention was associated with difficult work commutes and concerns about limited career advancement opportunities. The findings were reported in the journal Work, and the Journal of Occupational Rehabilitation.
The results demonstrate the critical role that job accommodations and opportunities for advancement have played for employees over the years. “We knew they were important, but we have now developed additional evidence that low-cost job accommodations could allow people with physical disabilities to work,” says Heinemann.
An additional paper on findings from the survey related to job accommodations is expected to be published shortly after the new year.