Multiple sclerosis is a disease of the central nervous system in which the covering around the nerves is damaged, interrupting the flow of messages to parts of the body. Young white women are afflicted with the disease more than any other group. Its symptoms include visual problems, lack of coordination, weakness or stiffness of limbs, fatigue and partial paralysis. It affects each victim differently and episodes occur unpredictably and with varying degrees of severity.
In 1978, the National Capital Chapter of the National Multiple Sclerosis Society began training 16 afflicted women to help newly diagnosed patients cope with their illness. "We had an unanticipated result," recalls Marianne Rose. "People started going back to work or school." The experience in peer counseling led to a three-year grant from the Education Department's Rehabilitation Services Administration for the chapter to set up a job bank, which would be a pilot project for the entire country.
It began in 1980 and has produced extraordinary results: Of the 300 people who completed the program -- people who were not employed, some of whom had suffered extreme paralysis and psychological devastation -- 61 percent are now employed full or part time. The others are in school, doing volunteer work, in physical rehabilitation programs or trying out jobs.
"MS is a disease of loss and fear of more loss," says Diane Afes, director of chapter services. "Most agencies have counseling, but they don't think about employment. We had the typical agency view of this." About 20 percent of the victims, she explains, progressively deteriorate to a point where they are paralyzed or legally blind or both. Another 20 percent suffer symptoms such as blurred vision and stumbling while they are in their 20s and then have more severe attacks that lead to a diagnosis, but the disease goes into remission for long periods of time. The other 60 percent of the victims "fall in between," she says. "They have ups and downs, but over the years it is still a descending staircase. It's unpredictable and it's difficult to plan one's life." Stress and fatigue can exacerbate the condition.
One of the graduates of Operation Job Match was a 29-year-old woman who had an MBA. Three weeks after the birth of her baby, she was paralyzed from the neck down. The diagnosis was MS. She recovered from the paralysis, but "she thought her work and career life was over," says Rose.
The woman began the two-month back-to-work training program, which is conducted in sessions of about a dozen people that are led by other MS patients who have already completed the program and are working. The group meets in two-hour sessions one day a week, building a support system at first, and then learning techniques of stress management. This particular young woman, says Rose, "was worrying so much she was making herself sicker. She studied biofeedback and turned it into a method for controlling her symptoms."
In subsequent sessions, the groups learn assertiveness training and what abilities they have in light of the disease and evaluate whether they can work full or part time and what work accommodations each would need. Later, they work on resumes and practice job interviews, particularly how to tell a prospective employer that they have MS. The job match program supplies names of potential employers. The young woman in point, who thought her career was over, now works full time for the government.
MS affects about 250,000 people nationally and about 2,000 in the Washington area. Since it usually strikes young adults, its victims are often skilled, educated people who have no experience with disabilities. Often they quit work or school long before they have to, says Rose. In many cases they become so fatigued in their work that they decide to quit, when minor accommodations in their work patterns would enable them to remain employed.
"It's amazing how clients change," says Karen Franklin, job developer for the program. "They just blossom."
Hundreds of people who were ready to give up have gotten work, hope, reasons to get up in the morning. Others who were getting disability stipends are now self-supporting. They have learned -- and taught others -- that a disability is not inability. The local chapter is looking for funding from private industry to expand its services and to set up internships in jobs that are particularly well-suited for MS patients.
The program's stunning rate of success -- at the relatively low cost of $150,000 a year -- should make it a model for similar efforts throughout the country. This is federal money well spent, indeed.