JAN is fortunate to have many thriving collaborations with organizations throughout the U.S. seeking to advance employment opportunities for individuals with disabilities. One of our strongest alliances is with the National Multiple Sclerosis Society (NMSS) – a national organization that seeks to improve the lives of individuals living with multiple sclerosis (MS) while searching for a cure.
What is MS?
According to the NMSS Web site, “…in multiple sclerosis (MS), damage to the myelin coating around the nerve fibers in the central nervous system (CNS) and to the nerve fibers themselves interferes with the transmission of nerve signals between the brain, spinal cord and the rest of the body. Disrupted nerve signals cause the symptoms of MS, which vary from one person to another and over time for any given individual, depending on where the damage occurs.” Functional limitations may include neuro-cognitive changes, fatigue, mobility impairments, vision loss, and chronic pain.
Employment and MS
Because of the complexity of the progression of MS and its unpredictable nature, each person may be affected very differently in their work life. For some, their career course may be unaffected for many years, while for others, an initial exacerbation of symptoms may lead to leaving employment — often prematurely. Access to, or continuation in, meaningful employment plays a critical role in the health and well-being of adults with MS, consequently the NMSS has made this a priority in the work they do.
Steve Nissen – Senior Director, Employment and Community Programs, NMSS – National Capital Chapter
Since 1998, Steve’s work with the NMSS at both chapter and national levels has focused on the importance of cultivating employment opportunities and supports for individuals with MS. Steve is a co-author of the book Employment Issues and Multiple Sclerosis 2nd Edition (2008) and directs numerous employment-related training and policy initiatives.
In my conversation with Steve, we wanted to highlight some new and updated resources available through NMSS (nationally) that focus on employment. In addition, Steve pointed out that the NMSS Web site has undergone a major facelift — adding resources and enhancing navigation. For those already familiar with the site, and for newbies as well, it will be worthwhile for you to visit the new online face of NMSS.
The employment portal of the Web site offers a wide range of resources for individuals with MS, employers, service providers, family members, and chapter trainers. Collaboration with JAN, particularly in the area of workplace accommodations, is evident throughout the site – including a photograph showing an individual viewing JAN’s Website as a resource. Steve highlighted a new resource on their site called Employment Matters: Managing MS in the Workplace. This training tool offers a video series as well as a written toolkit on how to “…navigate the complexities of managing work and MS.” Topics covered in the video include thinking proactively about employment, recent changes to the Americans with Disabilities Act (ADA), disclosure in the workplace; managing fatigue in the workplace; managing cognitive challenges in the workplace; and assistive technology and the workplace. The toolkit covers developing your skill set; job search strategies; writing a good resume; Social Security disability benefits and work incentives; disclosure issues; accommodation information; and components of the Americans with Disabilities Act (ADA). As a bonus, Employment Matters was designed to be implemented by local NMSS chapter staff and volunteers to address these important employment topics.
Other excellent employment resources available on the NMSS Web site include:
Career Crossroads – A six part video series on employment and MS.
Health Insurance Resources – One of the best sites for providing an overview of all the options, particularly the Affordable Care Act (ACA).
The Win-Win Approach to Reasonable Accommodation: Employment Issues – Discusses the employment provisions of the ADA; implementing reasonable accommodations; and taking a “win-win” approach to this process. NMSS has additional employment related brochures available on their Web site.
Find Services in Your Area – Find a NMSS chapter near you for one-on-one assistance.
An Information for Employers brochure is available.
The video MS Learn Online- Employment and MS features Steve responding to employment related questions.
Steve pointed out that making relevant employment information available to individuals with MS is a priority of the organization. JAN has been a participant in this effort through information sharing and reciprocal consulting, as well as partnering in various training and presentations.
I asked Steve what he thought were some of the biggest challenges for individuals with MS in the workplace. Without hesitation, he shared with me the following:
1. Leaving the workforce prematurely – Research on MS and employment shows that many individuals leave their jobs prematurely when the first exacerbation of symptoms occurs. Well-meaning family members, physicians, and others may be concerned that work is too stressful and support leaving. While each individual situation is unique, research shows with appropriate accommodations and support, many employees with MS can continue to work successfully in their positions. Accommodation consultation and suggestions from NMSS and JAN can provide individualized assistance with these questions.
2. Disclosure – Because symptoms of MS may not be visible, or come and go – the issue of disclosure is a challenge for many. NMSS and JAN can discuss these issues and respond to your specific questions and concerns.
3. Managing symptoms in the workplace – Steve pointed out that often individuals who contact them are not sure how to manage particular impairments in the workplace. An example might be someone who has lost some vision and can no longer view the text on a computer. NMSS and JAN can address these types of accommodation questions, which can empower employees with MS to stay on the job.
4. Being proactive and not waiting until there’s a crisis – Steve shared that too often NMSS and JAN get contacted about a workplace issue when it’s already turned into a “crisis.” He emphasizes to individuals who contact NMSS that “knowledge is power,” so learn as much as possible so you can advocate for yourself and know what resources and services are out there to support you in this process. Be proactive!
Steve is an invaluable employment advocate for individuals with MS around the country and friend to JAN. We thank him and the NMSS for all of their important work on behalf of individuals with MS.
Additional Resources:
National Multiple Sclerosis Society – Main Web Site
Toll Free: 1-800-344-4867
National Capital Chapter: National Multiple Sclerosis Society
1800 M Street, NW, Suite 750 South
Washington, DC 20036
Toll Free: 1-800-344-4867
Phone: 202-296-5363
Fax: 202-296-3425
“The National MS Society helps each person affected by MS in our area address the challenges of living with MS. We help by raising funds for cutting-edge research, driving change through advocacy, facilitating professional education and providing programs and services that empower people with MS and their families to move their lives forward.”
JAN – Accommodation Ideas for Multiple Sclerosis
Includes various accommodation examples for individuals with MS in the workplace.
Employment Issues and Multiple Sclerosis (2nd Edition) by Phillip Rumrill, Mary Hennessey, and Steve Nissen
“Employment Issues and Multiple Sclerosis, 2nd Edition is a must read for any person with MS that has a question regarding employment and disability. Chapters cover everything from vocational rehabilitation to job placement, and the laws covering employment.”
