The Enablers

With occupational therapy, disabilities needn’t sideline
otherwise productive lives.

And remedies—sometimes surprisingly simple—don’t come
from studying rats in a maze...



Naturally Occurring Retirement Community resident Sheldon Katz benefits from a new handrail—one simple remedy that’s making a meaningful difference.

“...the true disability is not the stroke or failing eyesight or weakening limb, but the mismatch between the person and his or her environment."


“We set up a meaningful challenge—meaning there’s a possibility of failure,” Matheson says. “You don’t give a person self-confidence just by bucking them up.”


“Assistive technology is more than wheelchairs, canes and walkers.”









MUCH OF THE EXCITING RESEARCH going on in the Program in Occupational Therapy at the School of Medicine is different from the typical image of scientific research. The three scientists described here aren’t peering into microscopes or running rats through mazes. They work with people who have disabilities, and they seek to help these individuals even as they learn from them in the course of research projects that will benefit the larger community. “Our study participants aren’t our ‘subjects,’” says David B. Gray, PhD, associate professor of neurology and occupational therapy. “They’re our partners.”


Susan L. Stark, PhD, OTR/L

“I want to help people get back to what’s important to them,” says Susan L. Stark, PhD, instructor in occupational therapy. Stark studies people coping with the disabilities of old age. From her viewpoint, the true disability is not the stroke or failing eyesight or weakening limb, but the mismatch between the person and his or her environment. And this can be remedied—often surprisingly easily. She recalls an older participant who had a stroke and then became morose because he couldn’t get down the stairs to the woodworking shop where he had hoped to spend his retirement years. A stair lift transformed his life.

“Environmental support is not hi-tech, so it doesn’t get much attention,” Stark says. Not enough research has been done to demonstrate that people benefit from simple home modifications, so policies don’t support them. For example, Medicare will pay for a person to help a patient get out of the bathtub, but not for a bath bench.

Stark and her colleagues are gathering evidence that can be used to persuade policymakers to make home modification more accessible. The study is particularly needed now, for the elderly are the fastest growing population segment, and the majority of them want to live independently in their homes.

This has led to the development of what the researchers call Naturally Occurring Retirement Communities (NORCs), where a disproportionately large number of residents are elderly. Stark estimates that a much greater percentage of those over age 65 live in NORCs than in nursing homes or designated retirement villages.

One such community, in West St. Louis County, is the subject of Stark’s study, a joint effort between the School of Medicine’s Center for Aging and the Jewish Federation of St. Louis, funded by a $1.3 million grant from the Administration on Aging, Department of Health and Human Services. This university-government agency partnership is unique in the field, and may prove to be a new model for research. Stark and collaborators are studying 80 elders. The researchers interview them to find out what modifications they need in their homes, and then work with a construction firm to make the changes. Follow-up interviews are conducted to find out how subjects’ lives have improved.

When it is easier and less stressful to perform daily tasks, people have more energy to get out of the house and into the community. Other aspects of the study, led by John C. Morris, MD, the Harvey A. and Dorismae Hacker Friedman Professor of Neurology, focus on family communication and education, transportation and life skills. Other occupational therapy researchers seek to connect participants with the community services they need. They also identify trouble spots, like intersections with confusing signage, and valued services, like a smaller supermarket that does not require customers to do too much walking. This data will be presented to government officials and local merchants interested in accommodating the growing elderly population.

Stark jokes that she is noticing benefits already. “When we schedule our initial interview with a participant, it’s no problem. But when we go back for the follow-up, it’s often hard to reach them. They’re too busy then.”


Leonard N. Matheson, PhD

As a practicing psychologist, Leonard N. Matheson, PhD, observed that when his clients could do useful work, they felt better. “I came to believe the best thing you can do for a person is get them a good job,” he says.

Matheson, associate professor of occupational therapy and of neurology, directs the School of Medicine’s Occupational Performance Center, where he is developing a new type of program to help people who are recovering from accident or illness return to work. Traditional programs, he believes, take a simplistic approach that does not prepare people for workplace challenges.

His laboratory, housed in the Rehabilitation Institute of St. Louis, is designing and testing sets of activities called Structured Work Activity Groups (SWAGs). Developed in consultation with employers, they provide clients with detailed and realistic preparation for particular types of jobs. One SWAG that uses a library as a “virtual employer” asks the client to perform such tasks as transcribing phone messages from an answering machine, tracking overdue books and calculating fines, working up a spreadsheet of patron information for a federal grant, and scheduling meeting rooms. The activities rise in difficulty, and the last one includes an irresolvable conflict.

“We set up a meaningful challenge—meaning there’s a possibility of failure,” Matheson says. “You don’t give a person self-confidence just by bucking them up.”

Traditionally, therapists believed that what clients needed was endless encouragement. Facing them with failure is a novel idea, but Matheson wants them to encounter it first in a clinical setting, not on the job. He explains that too often, people recovering from brain injuries react to failure by becoming depressed or angry—responses that can get them fired. So, in his lab as in real life, clients are judged on their work.

After the client completes a task, both client and therapist fill out an evaluation. Then they compare notes. “We want to correct inaccurate self-perceptions,” Matheson says. Many clients think they are ready to return to work when they have not yet adjusted to the effects of their injury or illness. An accurate evaluation keeps them from setting themselves up for disappointment.

In another SWAG, called Gepetto’s Work-shop after the puppet-maker in Pinocchio, clients take on more physical tasks, like cutting out wooden puzzle pieces with a power saw. Other activities exercise particular parts of the body. People whose injury or illness affected their hands put together a baby-changing table that has many screws and washers. People with shoulder or back problems have to bend and stretch as they build a bunk bed. All can benefit from the fact that these tasks require motor control and focusing of attention.

Matheson and his occupational therapy colleagues plan to develop a total of eight SWAGs. Assisted by other collaborators—physical therapists, speech pathologists, neuropsychologists —they evaluate activities, looking for consistent results in the clinic. The researchers also will follow clients back to the workplace to ensure that activities are relevant.

“We want to help therapists make the link to what’s expected in the real world,” he says.


David B. Gray, PhD

More and more technology is available to assist people with disabilities, but they often have a hard time finding out what is available, or even how to use products they have bought. The latter point was made obvious to David B. Gray, PhD, associate professor of occupational therapy and of neurology, when he got a new accessible van. Gray, a quadriplegic, received no training before he had to take the wheel for a 90-mile drive. “We made it, but my wife was quite pale,” he jokes.

One of the purposes of the new Enabling Mobility Center (EMC), which Gray directs, is to turn people with disabilities into informed consumers. The EMC will sponsor product fairs and educational conferences, but its main thrust is to bring person, technology and therapist together at the center, which is located not in a hospital but in the bustling—and easy-to-reach—University City Loop. There, an occupational therapist can help a person find the wheelchair that suits him best. People also can practice using their chairs in the Mobility Skills Lab, which offers such realistic challenges as uphills, downhills, sideslopes, and sand and gravel pits. The lab also has an exercise machine for developing upper-body muscles.

Assistive technology is more than wheelchairs, canes and walkers. The EMC has computers adapted for users who have trouble seeing the screen or tapping the keys. Occupational therapist Kerri Morgan notes that devices exist to help people communicate or operate household appliances remotely, and that there is a range of sports equipment available for athletes with disabilities.

The EMC staff is collaborating with Paraquad in a five-year study of how assistive technology benefits people, supported by the National Institute on Disability Research and Rehabilitation. “We’re gathering data to influence policy,” Gray says.

At present, insurance covers only equipment that supports activities deemed necessary for existence. Gray notes that in reality, much of the money is wasted on such items as toilet aids that prove useless.
Gray believes that the money would be better spent helping people buy equipment that would make it possible to work, drive, exercise and participate in the community. He also feels that such a change would lead to drops in obesity, type 2 diabetes, and other conditions that afflict the disabled. “If you’re active and enjoying what you do,” he says, “you don’t want to lie around in bed.”

In other studies, Enabling Mobility Center researchers seek to establish an objective standard of community accessibility and to show the benefits of giving the disabled more flexibility in choosing the people who aid them.

Collaborative projects include one with the University of Michigan that seeks to put video streams of people with disabilities at work as lawyers, bankers and educators on the Web. Gray hopes that the videos will motivate people with disabilities to seek employment.

“They’ll look at the screen and think, ‘I can do that,’” he says. “And if a skeptical employer asks, ‘How do I know a disabled applicant can do the job?, you just show him or her the video.”