Research With Purpose: Studies for the Disability Community
By Ashley Opp Hofmann
For some occupational therapy practitioners, occupational therapy and research are entwined with a sense of strong political purpose. In her research and work with the disabilities community, Joy Hammel, PhD, OTR/L, FAOTA, associate professor of occupational therapy at the University of Illinois at Chicago, has advocated the rights of persons with disabilities and generated a good deal of evidence to bolster her position.
Hammel is currently working on a set of research studies, all related to community participation barriers for persons with disabilities and supports, and funded by the National Institute on Disability and Rehabilitation Research (NIDRR). “We’re creating an online database to show pictures and descriptions of what the barriers to community participation are and showing what the best practices are as well,” she explains.
In these broader studies, several indicators demonstrated the need for more specific studies, which led to a study on home modifications to obtain very specific evidence on whether home modifications were worth funding (and they were). Another narrower offshoot included a study focused on identifying the barriers for persons with disabilities who want to leave nursing homes.
The Approach
Hammel uses participatory action research to identify both problems and potential solutions. “I really believe in this approach because it’s grounded in a partnership with the communities, examining issues they identify as the highest priority rather than topics set by me, the researcher,” Hammel says. “Topics and issues self-generate from the group.”
What does this research approach look like in practice? In one case, while investigating ways to get persons with disabilities out of nursing homes and institutions, researchers facilitated a town hall to get feedback on what issues people with disabilities faced. “One of the issues they identified was affordable housing. That led to a whole series we’re doing on access to integrated and affordable housing,” says Hammel.
Community Living and Participation
All of Hammel’s research addresses community living and participation. “The community is the framework for occupation,” she says. Fully participating within it encompasses four areas, in this study defined and determined by those with disabilities. “First, people should have access to affordable housing choices and participation choices. Affordability is first because no matter what we do with our research, that trumps everything else,” Hammel notes. Accessibility is the second concern, which encompasses physical, cognitive, learning, and social access.
The third area of community living is integration via civil rights legislation such as the Americans with Disabilities Act (ADA [1990]) and the Olmstead v. Zimring decision (1999), which give persons with disabilities the right to live with others in society rather than being forced to live in segregated housing such as skilled nursing facilities or other institutions.
The fourth concern is safety. “Occupational therapists usually think about safety in terms of whether or not someone has a safety risk. Those in the disabilities community see safety more in terms of the environment, such as security of the neighborhood: Is it safe from crimes, drugs, or abuse? So our role as occupational therapists on this team is looking at what can we do to adapt the environment or give access to resources that will make people as safe as possible,” Hammel says. “The disabilities community redefined safety for us. With action research, you don’t impose your definition. It comes from within the community.”
Coalesced, these four elements come down to basic freedom: “People with disabilities would define independence as the freedom to do what they want—to live where they want, to go out with who they want, and do what they want to do out in the community just like anybody else does. They don’t see this freedom as dependent on whether they can do it by themselves or not. So the issue is more centered on whether they have the resources—a personal attendant, a good wheelchair, home modifications—to allow them to fully participate,” Hammel says.
Research and Outcomes
Being an occupational therapist affects how Hammel conducts and approaches her research. “I don’t do research just to show occupational therapy. I do research to show an intervention and whether it works or not. It just so happens that it often highlights occupational therapy as a critical component of that intervention,” she says.
As an occupational therapist, Hammel plans strategies for meaningful occupation and engagement and makes sure she stays tuned into the people who will benefit from the results her research. “No matter how much I know as a professional I need to constantly listen to the voices of people who are going through these experiences,” she says.
Hammel’s research and its outcomes benefit persons with disabilities in various ways—some measurable and some not. For example, the home modifications study showed that those who received home modifications had significant functional improvements; those who did not received these modifications significantly declined. The study also unexpectedly indicated that those who received home modifications increasingly left their homes to participate in the community and were far less restricted; those without the modifications became more isolated.
“Not only are home modifications very effective, but the sooner you implement them, the better,” says Hammel. “We were able to show service providers that it’s worth the investment to get more people funded upfront to prevent big functional decline that puts people at greater risk for institutionalization and hospitalization. We could show that if you don’t increase funding earlier, you’re really going to pay later.”
But according to Hammel, the less tangible outcomes of her research are even more meaningful. “On an individual level, I see how this research has helped people with disabilities become more aware of their rights and resources. Then when they come together on studies, they are transformed. They become more confident about what they can address and change collectively,” says Hammel. “Measured health outcomes are the icing on the cake.”
References
Americans with Disabilities Act, 42 U.S.C. § 12101 (1990).
Olmstead v. Zimring, 527 U.S. 581, 623 n.6 (1999).
Ashley Opp Hofmann is AOTA’s senior staff writer.
