FROM THE VICE PRESIDENT
THE FOSSIL TRAIL
Sidebar: New center lands big grant
WOMEN OF SCIENCE
SCIENTIST Q & A
Cover: UM paleontologist George Stanley holds a rhinoceros jaw fossil in the storage room of the University’s paleontology research collection. Found in Montana, the fossil is from the Miocene epoch, which extended from 23 million to 5.3 million years before the present.
Vision is published annually by University Relations and the UM Office of the Vice President for Research and Development. It is printed by UM Printing & Graphic Services.
PUBLISHER: Daniel J. Dwyer. MANAGING EDITOR AND GRAPHIC DESIGNER: Cary Shimek. PHOTOGRAPHER: Todd Goodrich. CONTRIBUTING EDITORS: Brianne Burrowes, Alex Strickland, Judy Fredenberg, Erik Leithe, Rita Munzenrider and Patia Stephens. WEB DESIGN: Patia Stephens. EDITORIAL OFFICE: University Relations, Brantly Hall 330, Missoula, MT 59812, 406-243-5914. MANAGEMENT: Judy Fredenberg, Office of the Vice President for Research and Development, 116 Main Hall, Missoula, MT 59812, 406-243-6670.
People with disabilities lead the way in Rural Institute research
By Jason Wiener
In the late 1980s, the Centers for Disease Control commissioned four studies among people with disabilities about their secondary health conditions — health issues in addition to their primary disability.
UM’s Rural Institute on Disabilities received one of the grants, resulting in development of a nationally recognized health-promotion curriculum — Living Well With a Disability — that’s been adopted in more than 30 states. It’s been shown to improve the quality of life for thousands of people who have used it and helped reduce their medical expenses.
Ask Tom Seekins, director of the Research and Training Center on Rural Rehabilitation at the institute, what happened to the other three studies commissioned at the same time and he laughs, waves his hand and just says, “Bye-bye.”
What made the Rural Institute’s effort different — and enduring — is researchers involved the people they studied. In short, they listened.
The other studies, Seekins recalls, “were very medical … very good methodologically.” They were narrowly focused medical studies that surveyed subjects such the prevalence of urinary tract infections among people with spinal cord injuries. Seekins says that’s “just how things were done,” but his team took a different approach.
argued that we didn’t have a clue, really, what secondary conditions
were or how to go about defining them and so proposed that we would involve
people with disabilities in actually defining secondary conditions, then
develop interventions based on
This type of research, sometimes called community-based participatory research (but known as participatory action research at the Rural Institute), is not uncontroversial, even now. At the time, Seekins says, he and his team — which over the years has included UM’s Craig Ravesloot, Julie Clay and Anne Szalda-Petree, as well as Glen White from the University of Kansas — were well ahead of the curve and taking a risk with their chosen methodology.
Participatory action research, says Seekins, “is a different approach, and a lot of researchers are very resistant to that approach because they feel that it creates bias, it’s more expensive, it doesn’t add to the process — or even detracts from the process.”
Seekins has heard their complaints but sees something else entirely. “Our experience has been exactly the opposite over and over and over again.”
Andrea Dahl is someone who’s been moving forward under the guidance of Living Well with a Disability. When I met her, she was greeting attendees to a symposium celebrating the 25th anniversary of her employer, Summit Independent Living Center, an advocacy and resource center for people with disabilities in Western Montana that often collaborates with the Rural Institute.
Dahl seems to know everyone she sees or at least to be able to establish a rapport with them in just a few words. She doesn’t seem like someone who needs much help directing her life, probably because she’s got a direction now — having just completed a degree in social work and found a job she enjoys that employs her education.
Dahl has completed the Living Well with a Disability program twice and says it “was a lot of help. It gave me an extra incentive to improve my health [because] it wasn’t just focused on the gym. They also helped with understanding how my health got in the position it was.”
After realizing the health-related goals she set, Dahl says, “I realized I could also try other goals in life, too” — a realization she says deserves a portion of the credit for her recent successful stint in college.
the people lead
Seekins and his team, particularly Ravesloot, began their work by reviewing the literature on secondary conditions and compiling a list of 26 to measure. Then they took the list to focus groups of people with disabilities.
Focus group members added 14 additional conditions to measure.
Then, during a random survey to rank the 40 resulting conditions, 10 of the top 12 listed were supplied by participants in the study design and were not previously covered in the literature.
“If we hadn’t involved people with disabilities in helping to define the concept and create the measurement,” says Seekins, “then we wouldn’t have gotten those results, and that would have led us to develop an intervention that was misplaced.”
Instead, they developed a health-promotion curriculum to address the issues identified by people with disabilities as being important to them. By not focusing on acute medical conditions to the exclusion of psychological considerations, says Ravesloot, the team managed to create an intervention that fosters not just behavioral changes but lifestyle changes as well.
To do that, Ravesloot says the team needed to “design an intervention that’s going to pique [consumers’] interest in health promotion in general,” which meant making health a means to ends set by consumers rather than the end in itself that it was for researchers.
That, in turn, meant linking healthy lifestyle changes with attaining goals determined by consumers to be important. In essence, it meant not taking for granted that consumers would share a researcher’s set of values but instead finding out what consumers wanted and helping to deliver it.
The project has been a labor of love for Ravesloot. He started on the effort as a graduate student, later joined the staff of the Rural Institute and wound up receiving the Southwest Conference on Disability’s National Distinguished Disability Research Award in October for his work on the project.
Those in Need
The work of the Rural Institute’s research unit might be the leading edge of their mission, but it’s just one piece of what the organization does as a whole. The Rural Institute is a Center for Excellence in Disability Education, Research and Service, designated by an act of Congress as one piece of a network of advocates, service providers and researchers that exists in each state to support people with disabilities and the people who provide services to people with disabilities.
Funding for the Rural Institute, which was created in 1979, comes from the federal government’s Administration on Developmental Disabilities, but that core grant made up less than 10 percent of the Rural Institute’s budget during FY 2006.
The balance comes from a blend of mostly state and federal funds, both grants and indirect assistance. Through these funding sources combined within a single organization, the Rural Institute funds many programs and now employs 75 people working on $9 million in projects.
Education is a major focus for the Rural Institute, specifically ensuring that good ideas in one discipline “don’t get stuck in one discipline,” as Vogelsberg puts it. Also important to its mission of “supporting the independence, productivity and inclusion of persons with disabilities into the community” are programs that provide short-term loans and demonstrations of various types of assistive technology. Multiple programs support people through everything from hearing evaluations, equipment to control the environment in homes, access to employment in the community and support to start businesses.
is the Key
But, as it happens, Seekins and his colleagues Nancy Arnold and Catherine Ispen are working on just such a way to systematically describe and quantify it in a research context.
The project is an instance of a research model called ecological momentary assessment that aims to dynamically measure the subjective experience of people with disabilities as they participate in the life of their community. The methodology relies on brief computer-directed questionnaires timed to occur randomly throughout the day that catalog a participant’s actions and company, as well as any barriers being encountered because of his or her disability.
It’s a more basic type of research than the Rural Institute — which mainly conducts applied research — typically pursues. However, the opportunity to conduct the ecological momentary assessment arose in conjunction with an applied research project that involves people with disabilities in planning for community economic development, and the data it generates will provide an index of success unprecedented in disability research.
As for the applied research project on which the ecological momentary assessment is piggybacking, it already looks like a success. The project, which led by Nancy Arnold, research director for rural employment and economic development at the Rural Institute, employs people with disabilities to conduct surveys of local businesses with an eye to identifying opportunities for new businesses or for existing community businesses to expand. In doing so, the program places people with disabilities in leadership positions in community economic development efforts.
Thus far, this Rural Community Economic Development project has resulted in scores of new businesses — more than 80 percent of which are still going at the most recent measurement. The project’s design, says Arnold, resulted not so much from an institutionalized participatory action research process, but rather from long-term relationships with consumers guided by the philosophy that researchers should answer the questions consumers perceive as requiring attention.
In the case of the Rural Community Economic Development project, that meant conducting a concerns report, employing a tool of participatory action researchers and then staying attentive for how those initial questions could be further tuned to the community’s concerns. When the concerns report, which surveyed vocational rehabilitation counselors nationwide, identified a lack of rural employment opportunities across the board as a concern, Arnold and her colleagues went looking for a way to alleviate it.
But, of course, underperforming rural economies are a concern for people regardless of whether they have a disability or not. And by employing people with disabilities to present solutions for problems facing the whole community, the project was able to address the concerns of people with disabilities by way of solving broader issues.
When people with disabilities are recognized as a resource for the whole community, says Arnold, it “integrates people with disabilities … so they are not thought of as a different population but as an integral part of the functioning of a community.” This allows, she continues, “disability issues to be brought forth in more subtle ways.” It also activates people with disabilities and their service providers so that, for instance, vocational rehabilitation providers are not seen merely as passive repositories of potential employees but active creative forces generating economic activity.
There are similarities among Living Well with a Disability, the Rural Community Economic Development project and other Rural Institute research projects in regards to transportation availability, design accessibility and the occupational effects of secondary conditions. In each case, the well-being of the person being served, as it is perceived by the person being served, is the measure of a successful outcome.
Ravesloot puts it this way: “What really sets Living Well with a Disability apart from others is that health becomes a means to an end. The goal of the program is to help people make lifestyle changes, but they do that in the context of setting goals and moving forward in their lives.”
People with disabilities know what they want from life no less than people without disabilities. If helping them discover and achieve these individual and diverse goals is the objective of providing services, then listening first — as the Rural Institute makes a point to do — seems the best way to see results in the end.