PUBLIC INTEREST

Environment now key to disability research

By Joe Volz
Monitor staff

Thanks to the urging of rehabilitation psychologists, the National Institute on Disability and Rehabilitation Research (NIDRR) is funding studies that could help millions of Americans with disabilities return to society as productive workers a bit sooner.

NIDRR is developing a long-range plan for studying disabilities in a broader framework than just looking at individuals. The plan argues that the old thinking--viewing the individual as mainly responsible for his health--is not quite accurate.

Richard Melia, PhD, NIDRR research director, says that the new concept "maintains that disability is the product of an interaction between the individual and the world he lives in [the cultural and social environment]."

Leading the way in the new examination of victims of traumatic brain injury (TBI) spinal cord injuries and severe burns are researchers like Mitchell Rosenthal, PhD, who has just been named vice president for research at Kessler Medical Rehabilitation Research and Education Corporation in West Orange, N.J. Rosenthal is project director of a national center that collects long-term information about traumatic brain injury to find out what works, and what doesn't, in rehabilitation. He says, "We really need to know what type of treatment is cost-effective for which individuals with traumatic brain injury."

Seeks causes

Right now, this longitudinal study is following about 1,200 persons with TBI from 17 centers around the country. The Traumatic Brain Injury National Database was established to identify the causes of injury, severity, types of treatment, costs and factors that predict outcome. Rosenthal says, "A major focus of our project is just examining the natural history or recovery of basically young people 5 to 10 years post-injury."

The results are not in yet, but Rosenthal can make tentative observations in some areas--for example, return to work of brain-injured workers is "really very poor in urban areas," he says. "In the beginning, maybe 30 to 60 percent are employed, but one year post-injury, only 23 percent and three years out, it's 13 to 15 percent."

"It's not terribly surprising," Rosenthal says. "People are not able to return to competitive employment. The longer it goes, unless a person is in a very special treatment program, the harder it is, due to the combination of cognitive, behavioral and physical disabilities. Urban families with modest incomes are hard-pressed to afford the type of quality medical care and therapy needed following traumatic brain injury."

The low success rate is not just the client's responsibility, as might have been concluded a few years back when the role of the employer in dealing with the disabled was not examined. Now, says Rosenthal, the attitudes of the employer and co-workers are key factors in determining how successful the disabled worker is. An unsympathetic attitude, particularly toward those with cognitive problems that are unseen, needs to be overcome, Rosenthal argues.

Coaches helpful

If employers are convinced that persons with brain injury can be useful workers, at no additional cost, then initial resistance can be lessened, says Rosenthal. Job coaches who accompany the employees to work are funded by public agencies, usually state vocational rehabilitation offices. They not only improve the worker's skills, but change the employer's attitude. For one thing, the company gets a tax break.

The brain-injured are mainly in the 15-to-35 age group, often victims of car crashes, although in many urban areas more injuries may be due to assaults than auto accidents. Rosenthal has discovered that about 50 percent of brain injury cases involve alcohol or drug use and that "despite being heavily cautioned about old habits, approximately 40 percent [of the injured] go back to moderate or heavy drinking."

Meanwhile, at the University of Washington-Harborview Medical Center, David Patterson, PhD, a psychology professor, is studying burn patients. He is affiliated with one of four hospitals funded by NIDRR that examines what kinds of problems disability patients have, whether physical or emotional.

Patterson is interested in finding out if medical personnel sometimes hamper recovery of burn patients by reacting too severely. He has discovered that doctors at a hospital "might exaggerate the problems of a burn patient."

"I think, occasionally, a surgeon will see someone severely burned and say it is no use to keep that patient alive," Patterson says.

Research has discovered, Patterson argues, that doctors cannot conclude that a seriously burned patient has less of a desire to live than a lesser-burned patient.

"You can't predict the quality of life based on the size of the burn," he says.

He also discovered that "a lot of patients won't do what their therapists tell them to do."

Patterson isn't quite sure why but hopes to find ways to surmount those barriers.

One way is using support groups of other burn survivors who meet with the recent survivors on a regular basis. The veteran survivors point out that they have been through the same thing. He says the study also uses survivors as consultants.

"I think in burn units, the staff tends to overwhelm patients. We get the staff to slow down, make more reasonable demands on the patients. It isn't easy." But he says, "We're looking at innovative techniques to increase therapy performance. The burn survivors come in once a week and work real carefully with the patients.

"We are becoming more aware of a key issue in rehabilitating."

Patterson tries to emphasize to hospital medical staffs that "we must put the needs of the patients first." In other words, nurses and doctors should develop the philosophy that they are working for the patients.

Meanwhile, NIDRR is also funding landmark research in spinal cord rehabilitation. Kristofer Hagglund, PhD, research director for the Department of Physical Medicine and Rehabilitation and the Rusk Rehabilitation Center, is the principal investigator for the Missouri Model Spinal Cord Injury System (MOMSCIS). It is one of 18 NIDRR-funded centers around the country trying to help those with spinal cord injuries to integrate back into the community. MOMSCIS is focusing on individuals who have traditionally been underserved by the health-care system, such as women, minorities and those who live in rural areas.

The program does something that business does all the time: asks the customers what they want.

Hagglund puts it this way: "Consumers are involved to a great extent. We believe in letting them help determine the solution. Sometimes, people do very well without any help. More often, a partnership among the consumers with a spinal cord injury, family and friends, community health-care providers and the rehabilitation team is needed."

Rural survivors

Hagglund also believes in asking for help from the people who are survivors themselves.

"Like several other model spinal cord injury systems, we have a role model program where people with new injuries can learn from people who have suffered similar injuries and are doing well."

The key lesson Hagglund and his researchers have learned is that it is "extremely important to evaluate each patient individually. Don't make any assumptions. Don't stereotype."

Hagglund has taken a keen interest in rural Americans. He says those with spinal cord injuries have been underserved for years. He estimates that 13 million rural Americans have permanent disabilities of some form.

"Not only are there fewer health-care providers--particularly providers trained in rehabilitation of spinal cord injury--family practitioners in rural areas often have less experience with medical management of spinal cord injuries than do their urban counterparts.

"Our model spinal cord injury system team travels to rural communities all over the state to provide education and service to both health-care providers and consumers."



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