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Presentation Highlights MS and Workplace Issues

By Eddy Ball
July 2009

National MS Society logo
(Courtesy of the National Multiple Sclerosis Society)

Portrait of Steve Nissen
As Nissen, above, explained, "Approximately 60 percent of people with MS are working at the time of diagnosis, [but] several years down the road, the percentage remaining in the workplace drops to around 40 percent." (Photo courtesy of the National Multiple Sclerosis Society)

Portrait of Gerard Roman
Roman (roman@niehs.nih.gov), above, is an NIH EEO specialist headquartered at NIEHS, and he is well versed in the extended coverage of the ADAAA and resources for people with disabilities. (Photo courtesy of Steve McCaw)

Portrait of Alicia Moore
Moore (moore5@niehs.nih.gov), above, has become an expert on resources for accommodation. She and her fellow DAC members have extended an open invitation to employees at EPA to attend NIEHS presentations on the topic. (Photo courtesy of Steve McCaw)

In a June 9 presentation viewed as a job-site videocast at NIEHS, two major advocacy groups for people with disabilities explored the topic "Multiple Sclerosis (MS) in the Workplace" and the anticipated impact of the new Americans with Disabilities Act Amendments Act (ADAAA) and new regulations yet to be issued (see story (http://www.niehs.nih.gov/news/newsletter/2009/april/roman-outlines.cfm)). The event, which was sponsored by the NIEHS Disability Advocacy Committee (DAC) and the NIH Office of Equal Opportunity and Diversity Management (OEODM) attracted employees of NIEHS and neighboring U.S. Environmental Protection Agency (EPA).

Collaborating on the presentation (http://www.jan.wvu.edu/webcast/index.htm) Exit NIEHS were lead speaker Steve Nissen, of the National Capital Chapter of the National Multiple Sclerosis Society (NMSS) (http://www.nationalmssociety.org/chapters/DCW/index.aspx) Exit NIEHS in Washington, D.C., and U.S. Department of Labor Job Accommodation Network (JAN) (http://www.jan.wvu.edu/index.htm) Exit NIEHS consultants Beth Loy, Ph.D., and Melanie Whetzel. Representing NIEHS at the event were DAC chair Alicia Moore and EEO Specialist Gerard Roman.

The first part of the program was an overview of MS by Nissan, who is the national chapter's director of Employment Programs and of Operation Job Match. He explained that MS literally means the "many scars" on myelin that result from "inflammatory attacks at multiple sites in the central nervous system." He emphasized that the "hallmark of MS is its unpredictability and variability," the kind of disability new provisions in the ADAAA are meant to address.

"No two people with MS are the same," Nissan observed as he described the broad range of visible and invisible challenges that the estimated 400,000 people with MS in the U.S. may experience in the workplace. Their symptoms range from overt movement and speech disabilities to "hidden" problems with fatigue, cognitive and emotional changes, pain, and systemic dysfunction.

Diagnosed typically in the prime working years of age 20 to 50, it is more frequently seen in Caucasians and two to three times more common in women than men. Although there are some treatments, MS is incurable, and the condition is further complicated by an inexplicable pattern of remission and recurrence.

Because people with the condition need varying degrees of accommodation or even no accommodation at all, Nissen continued, the issue of disclosure can be problematic. Nissen, Loy and Whetzel each contributed their perspectives on how people with hidden and recurrent disabilities may want to approach the task of telling others of their needs for accommodation. Although legally the situation should become clearer as legal and regulatory interpretations of the ADAAA appear, disclosure still presents emotional challenges for workers with MS.

Throughout the presentation, Nissen, Loy and Whetzel emphasized that accommodation can be a win-win situation for workers and employers - as long as they approach their negotiations in a cooperative way. The ADAAA, Loy noted, is itself the result of "a cooperative effort between the business sector and the disability community," with both groups supporting the extension of the law's protection to more employees in a collaboration that promises advances toward the goal of equal opportunity employment.

As she listed several examples of accommodations, Loy said, "A lot of these things are about good management" and create no real burden for employers who can continue to benefit from the talents of employees with long-term or intermittent limitations. The presenters encouraged the audience to take advantage of the many resources for employees and employers available from NMSS (http://www.nationalmssociety.org/living-with-multiple-sclerosis/employment/disclosure/resources/index.aspx) Exit NIEHS and JAN (http://www.jan.wvu.edu/topics/discl.htm) Exit NIEHS, as well as the comprehensive "The 411 on Disability Disclosure" (http://www.ncwd-youth.info/assets/guides/411/411_Disability_Disclosure_complete.pdf)  Download Adobe ReaderExit NIEHS (42 KB) workbook available at no cost. They also invited individuals to contact the organizations for more information and personalized consultation.



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