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National MS Society Studies Reveal Employment Concerns for People with MS—Webinars & Telelearnings Explore Job Issues

February 3, 2016

Summary
  • A new study funded by the National MS Society surveyed nearly 2,000 people with MS, revealing concerns including understanding the Affordable Care Act and the Americans with Disabilities Act, requesting accommodations at work, and disclosing MS.
  • A second survey administered to this group revealed that employment status and job satisfaction correlated with improvements in quality of life.
  • The teams (led by Dr. Phillip Rumrill Jr. from Kent State University, OH, and Dr. Malachy Bishop of the University of Kentucky) have published results in the journal Work (2015;52(4):735-48, 2015;52(4):757-65).
  • The National MS Society connects people affected by MS to important employment resources (including several webinars & telelearnings, starting February 9), as does the U.S. Department of Labor's Office of Disability Employment Policy.
Background: Multiple sclerosis can affect a person’s family life, career, standard of living and quality of life. Investigators funded through the National MS Society’s Health Care Delivery and Policy Research Program study such issues and provide data that can serve as the basis for influencing public policy and offering people with MS and their families practical ways for improving the quality of their care and the quality of their lives.
 
Professor Phillip Rumrill, PhD (Kent State University) was funded by the Society to conduct a survey to explore whether The Americans with Disabilities Act (ADA) had improved employment issues, including discrimination and quality of worklife, for people with MS. The ADA exists in part to reduce discrimination against people with disabilities and to promote retention of people with disabilities in the workforce.

The Studies: In one study, the researchers administered a survey to 8,000 people who were recruited through the National MS Society. Of these, 1,924 people returned the questionnaire, which included 98 items on demographics, illness-related questions, and 38 employment concerns.
 
The results highlight important information about MS and employment. First, less than 40% of respondents were paid employees at the time of the survey, although 98% had a history of being employed and 82% were working at the time of their diagnosis with MS.
 
Six concerns were labeled as “employment weaknesses,” meaning that the respondents were not satisfied with current employment policies and practices in these areas:
  • understanding the Affordable Care Act (which provides health insurance coverage for Americans with pre-existing conditions and removes annual and lifetime caps)
  • knowing how to discuss job accommodation needs with employers
  • being able to request a review of accommodation needs without fear of retaliation
  • understanding the employment protections in the Americans with Disabilities Act
  • the possibility of reassignment to other jobs in the same company (this is considered a last resort after all other accommodation strategies have been used, but is often met with resistance by employers)
  • disclosing disability status
The team makes several suggestions for addressing these concerns. For example, they comment that “all Americans working with MS” need to understand the provisions of the Affordable Care Act for people with MS – that they cannot be denied coverage due to a pre-existing condition and do not face a lifetime “cap” to coverage. They also suggest that rehabilitation professionals work closely with employers to determine whether accommodations will enable them to stay in current jobs; if reassignment is necessary, support should be provided to help the worker adjust to the new job and determine if additional accommodations are necessary.
 
In a second study, researchers administered another questionnaire to the same group to determine if there were relationships between quality of life and illness, employment, and psychosocial factors. According to the responses, a higher quality of life was reported with increased education levels, employments status, and job satisfaction. The authors comment that vocational rehabilitation may improve quality of life for people with MS, and that this type of rehabilitation appears to be underutilized.
 
The teams (led by Dr. Phillip Rumrill Jr. from Kent State University, OH, and Dr. Malachy Bishop of the University of Kentucky) have published results in the journal Work (2015;52(4):735-48, 2015;52(4):757-65).
 
Next Steps: The National MS Society connects people affected by MS to the individuals, information and resources they need to move their lives forward. Making these connections can start to address the findings of these studies.
 
Register here for a webinar & telelearning on February 9, 8:00-9:15 p.m., “Navigating Career Change: Working with MS is Possible!” This is one of several webinars & telelearnings focusing on employment; view them here.
 
The Society provides important resources to people with MS on employment, including: The U.S. Department of Labor's Office of Disability Employment Policy also provides a wealth of resources through its Job Accommodation Network, including specific resources for people with MS. People with MS also can contact Vocational Rehabilitation Agencies in their states for more information on services such as vocational counseling, training, and job search assistance.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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