By Christine Norris
Many people choose to work for reasons greater than money alone. The interaction with others, the feeling of completing a well-done task, and the human need to feel valued in society, all make a paycheck so worthwhile. But when an illness strikes, individuals cannot always perform their jobs in the same way as they did in the past. Individuals with MS may find that symptoms such as increased fatigue, limited mobility, and visual changes may impact their ability to work. While the symptoms of MS can often be managed, job accommodations may be necessary to continue to work productively.
Some people with MS remain in their jobs with little or no modifications to their present working situation, while others may decide to leave their current position to be retrained to do something else. Fortunately, government funding is available for individuals with disabilities to receive the help they need to enter, re-enter, or remain in the workforce. This assistance enables men and women with MS to find the right occupation, work environment, work schedule, and game plan for their unique circumstances.
Once diagnosed with MS, some individuals may go through the process of rethinking their life, but finding the necessary help to achieve new goals can be difficult. These individuals may take comfort in knowing that a good deal of assistance is available to help with determining the best employment path to take. Several sources have been listed in this article for anyone interested in more information.
Determining What’s Needed
Jamie Cahill was diagnosed with MS at age 27 while traveling with her husband on the professional tennis circuit in 1979. She spent the next 10 years trying in vain to find a treatment that might keep the disease from progressing. After moving from Memphis to Atlanta, she found a doctor at the Shepherd Center who treated her with one of the approved, long-term medications for MS. So far, the medication has been effective in slowing her disease activity.
According to Cahill, “The staff at the Shepherd Center works with the whole person. After I had been stabilized for enough time, I told them that I really wanted to work. The vocational rehabilitation people there helped me every step of the way.”
She continues, “I love to work. I begged everybody from one end of the planet to the other to let me work. I’m skilled. I’m motivated. I love being around people. I have some gifts that I can share.”
Cahill went on to work for five years at a large insurance company in the claims department and as a motivational speaker for the company’s long-term disability recipients. Now she works from home as an ESL (English as a Second Language) instructor and in customer service monitoring fuel delivery all over the country.
The mother of two children, now ages 22 and 24, Cahill at 53 exemplifies the “can do” attitude that people with MS need to possess in order to enter, rejoin, or remain in the workforce. Armed with an elementary education degree and plenty of determination, Cahill and the staff at the Center for Assistive Technology and Environmental Access (CATEA) at the Georgia Institute of Technology developed strategies for her to work both in a corporate environment and a home-office environment. They implemented assistive technology in both spaces to accommodate her physical disabilities.
“Since I’m in a wheelchair and cannot use my hands or my legs, I had to have a voice-activated computer and a work station that accommodates my wheelchair. They set it up for me and trained me to use it,” she recalls.
Cahill also was able to take advantage of government-funded vocational rehabilitation (VR) programs administered through the state of Georgia’s Vocational Rehabilitation Agency. “They sent me, free of charge, to California to take three courses in order to be certified to teach ESL,” she says. “Also, all of my office equipment and its set-up didn’t cost me anything because I qualified for assistance. People with MS need to know that there’s government money available for people who are disabled. You have to network to find the particular government agencies that have the funding.” For a list of state vocational rehabilitation agencies with links to their websites, readers may click on www.jan.wvu.edu/sbses/vocrehab.htm (link no longer active).
“I often work with employers to help them develop strategies to keep people with MS and other disabilities at work,” says Carrie Bruce, MA, CCC-SLP, ATP, research scientist at CATEA and speech therapist at the Shepherd Center. “In most cases, it’s a lot easier and a lot less expensive to make accommodations for an employee with a disability, than it is to hire someone new and have to train that person. It’s an issue of awareness and education. There’s a lot more to it than physical access.”
Understanding Your Rights
Also referred to as the “Emancipation Proclamation” for those with disabilities, the Americans with Disabilities Act (ADA) prohibits discrimination in employment and in providing goods and services to individuals with disabilities. Federally mandated in 1990, it guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.
To be protected under the ADA, the law reads: “A person must have a physical or mental impairment that substantially limits one or more of the major life activities of such individual, a record of such an impairment, or be regarded as having such an impairment.” People who have been clinically diagnosed with MS are covered.
The Title I employment nondiscrimination requirements of the ADA prohibit discrimination in all employment practices, including job application procedures, hiring, firing, advancement, compensation, training, and other terms, conditions, and privileges of employment. Its reach includes recruitment, advertising, tenure, layoff, leave, fringe benefits (such as access to the executive dining room, club memberships, etc.), and all other employment-related activities. For a copy of “The ADA: Your Employment Rights as an Individual with a Disability,” readers may call (800) 514-0301(voice) or (800) 514-0383 (TTY); readers may also visit www.ada.gov and go to “frequently asked questions.”
“The laws covering disabilities do not establish quotas for hiring as do those laws associated with affirmative action. Many agree that the hiring of those with disabilities has not gone nearly far enough,” writes Sharon F. Kissane, PhD, on page 209 of her book, Career Success for People with Physical Disabilities (VGM Career Horizons: 1997). “But you can make the difference by being hired on your abilities, making a successful career, and becoming a role model for others.”
One of the most difficult decisions to make is whether or not to disclose an MS diagnosis to an employer. Many individuals are afraid to share the information because of the risk of being fired, even though it’s against the law to terminate employees for their disabilities. Counselors and vocational rehabilitation (VR) professionals stress that this is a very sensitive subject, one that should be dealt with on a case-by-case basis.
In general, if MS symptoms are mild and do not interfere with a person’s ability to perform the essential functions of a job, the employee is under no obligation to reveal the diagnosis to the employer. However, if an individual’s symptoms are interfering with his or her ability to complete job tasks and remain productive, disclosing the diagnosis might be in his or her best interest.
When sharing the diagnosis with an employer, taking a positive approach and emphasizing skills rather than limitations may be a good plan. One might discuss specific needs for modifications and how these modifications will contribute to the success of the operation.
Relatively inexpensive accommodations can make a significant difference in an employee’s productivity. For example, a parking space closer to the building may lessen fatigue, a computerized pocket planner/recorder can help with memory deficits, and dictation of reports may assist with decreased dexterity. For more information on “reasonable accommodations” and how to implement them, readers may refer to the EEOC’s “Enforcement Guidance: Reasonable Accommodation and Undue Hardship under the ADA” at www.eeoc.gov/policy/docs/accommodation.html.
“We advise our clients to review the human resources’ manual before meeting with the company representative. It’s important to review what was signed (in terms of a contract when beginning the position) and what tasks one thinks can still be accomplished,” advises Cindy Richman, director of client services for MSAA. “It’s also a good idea to bring a vocational rehabilitation counselor along to show the employer how certain tasks will be performed with certain accommodations.”
Under dictates of the ADA and other employment discrimination laws, an employer cannot address these accommodation issues unless the employee is willing to openly discuss his or her needs. Someone who chooses to keep an employer in the dark may risk receiving a poor performance evaluation.
CATEA’s Carrie Bruce has worked with more than 100 individuals with disabilities to help them remain in or enter the workforce. She has found that disclosing information on a disability to employers isn’t always necessary; but if accommodations may need to be made later on, obtaining them might be easier if the diagnosis has been shared.
“If any job modifications or accommodations have been agreed upon, it’s very important to document what’s been decided, especially in large companies where there can be a lot of supervisor or human resources turnover,” Bruce stresses. “By having documentation, the employee and employer can go back on a yearly basis and determine if the situation is still meeting the needs of everyone.”
Bruce also recommends discussing what she calls “nontraditional accommodations” to help relieve MS symptoms. “For example, an employee experiencing pain or fatigue may need to take frequent breaks, while a person with fluctuating vision may need to move from one work station to another.” For a discussion of reasonable accommodations and how to implement them at work, readers may refer to the EEOC’s document mentioned earlier.
The explosion of advances in assistive technology (AT) has helped many people with MS continue to work productively. Bruce explains, “Computer access and telephone access have really opened up employment options for people with MS. Many large firms are moving to phone services over the computer. This is really big because phone access through the computer can be adapted for a variety of needs. For example, if a person has trouble seeing, the screen can be enlarged. If the person has trouble hearing, the speakers can be made louder. If the person can’t physically dial a telephone, voice dialing can be added.”
Bruce notes, “In fact, most office equipment can now be accessed via a computer, including the copy machine and fax machine. As long as a person has a consistent movement, an eye blink for example, he or she can have full access to the computer.”
The term “assistive technology” (AT) refers to any product that is employed to increase, maintain, or improve the functional capabilities of an individual (as defined in PL 100-407, the Technology-Related Assistance for Individuals with Disabilities Act). Such AT may be considered for reasonable accommodations; AT products provide solutions for mouse access, typing, viewing information, reading, and many other computer-related tasks.
Specific information on minimizing the “digital divide” for individuals with MS is available in three articles recently published in The Motivator. The first article published in the Fall 2004 issue features various seating, table, and workstation systems to increase function and comfort for the computer user. The second article published in the Winter 2005 issue highlights different types of computer hardware AT, including monitors, keyboards, and mouse/cursor control. To request issue copies, please call MSAA at (800) 532-7667. To view or download a copy of the articles (or the entire issues), readers may visit MSAA’s website at www.mymsaa.org. The third part of the series covering computer software AT is found on page 27 of this issue.
Studies also indicate that 41 to 44 percent of the MS population experiences some type of speech or voice dysfunction. Augmentative and alternative communications (AAC) can help those with this type of impairment to communicate more effectively with others. In “Speech Solutions,” published in the Fall 2003 issue of The Motivator, various AAC products are discussed. To request or view a copy, readers may call MSAA or log onto the website, as mentioned in the previous paragraph.
The Telework Boom
Some individuals with MS are afraid to suggest flextime (also referred to as flexible hours) or telecommuting (also known as telework) to their employers because they fear rejection or loss of status. According to an article in the March 2003 issue of TechConnections (published by CATEA, the United Cerebral Palsy Association, and the Southeast Disability and Business Technical Assistance Center), telework has become a viable job accommodation. The ADA includes telecommuting as a reasonable accommodation when a person’s disability prevents the successful performance of the job in the standard working environment.
During the past several years, employers have shown an interest toward applying this approach to work activities conducted by all employees, not just for those with disabilities. In some states, vocational rehabilitation agencies have been moving to some form of telework in order to reduce administrative and facility costs, while promoting increased efficiency for rehabilitation counselors, job placement specialists, and others.
Recent studies on the subject of telework and improved corporate and individual performance support these views. Findings include:
- According to research conducted in October 2000 by the International Telework Association & Council (ITAC), a teleworker can save an employer approximately $10,000 per year in reduced absenteeism.
- Teleworking can improve employee performance due to working peak hours, uninterrupted work time, and other factors, according to a Colorado Telework Study. The study found that American Express teleworkers produced 43 percent more business than office workers; results also showed that Compaq teleworkers increased productivity by 15 to 45 percent.
- According to an article published in the magazine Telecommuting Review, IBM reduced its real estate costs by 40 to 60 percent after implementing a corporate-wide telework option. The savings resulted from more people working from home, requiring less office and parking space at the business location.
Michael Dziak, author of Telecommuting Success: A Practical Guide for Staying in the Loop While Working Away from the Office (Park Avenue: 2001), lists the following tips to avoid common telecommuting traps and to make telework a success.
- Avoid the “do-it-all” trap by prioritizing your daily duties and organizing your schedule to focus on a single work task at a time.
- Avoid the “sloppy surroundings” trap by establishing a defined office environment and make the commitment to keep it organized and secure. A separate room that is used only as an office is best.
- Avoid the “nosy neighbor” trap by setting work hours and maintaining strict adherence to the schedule. Everyone, from family to friends to repairmen, needs to understand which periods of your time should be free from interruptions.
- Avoid the “housekeeping trap” by refraining from multitasking when it comes to doing the laundry, the dishes, and the housework. Some people make rules that these activities can be done only at certain times of the day.
- Avoid the “secluded trap” by staying in touch. Make the effort to keep in regular contact with the office, especially your immediate supervisor so that you don’t fall into the “out of sight, out of mind” routine. This concern is often prevented by making periodic visits to the office.
Other experts recommend different strategies to help make working from home a success. For instance, to combat feelings of social isolation, teleworkers may schedule time to be with others. Some at-home workers make lunch dates with friends, while others take an exercise break. Sometimes even a brief phone call during lunch to a friend can make one feel connected to the outside world.
Not allowing work to interfere with family life is important as well. After putting in the required time, a teleworker should leave the work area and not think about it again until the following work day.
Many individuals with MS can benefit greatly from vocational rehabilitation (VR). VR provides a wide range of services to help individuals with disabilities succeed with their work. These services may include:
- vocational guidance and career counseling
- evaluation of rehabilitation potential
- restoration of physical and/or mental skills
- vocational and other training services
- rehabilitative technology, including assistive technology services, assistive technology devices, and rehabilitation engineering
- occupational tools and equipment
- transportation to access other vocational rehabilitation services
- job placement into suitable employment
- financial assistance to cover additional costs incurred during the period of vocational rehabilitation
- personal assistance services, such as a personal care attendant, scribe, reader, and interpreter
- assistance with making the transition from school to work
- guidance in starting a business
According to section 102(a) of the Rehabilitation Act of 1973 (with amendments), to be eligible for state-funded VR services, a person must be able to benefit from VR services in terms of achieving employment, including supported employment (programs to assist individuals with severe disabilities). The person must also:
- have a physical or mental disability which constitutes or results in a substantial impediment to employment
- be able to benefit from VR services in terms of employment
- require VR services to prepare for, enter, engage in, or retain gainful employment
The Rehabilitation Services Administration (RSA) of the federal government oversees the grant programs that fund the VR programs in each state. The services are free of charge. Unfortunately, due to the number of cases, not everyone who is eligible can receive services. Individuals with the most significant disabilities are given a priority over those with less significant disabilities.
For more information on how the state VR programs work and how to apply, readers may log onto the Office of Special Education and Rehabilitative Services’ website at http://www.ed.gov/about/offices/list/osers/rsa/research.html. Information on other options for VR, which are free of charge or provided at a reduced fee, may be obtained by calling the Georgia Tech Center for Assistive Technology and Environmental Access (CATEA) at (800) 726-9119 (toll-free voice/TTY).
A VR counselor works with an individual to set realistic goals and to develop strategies to assist an individual in the workplace or other vocation. As dictated by a person’s specific needs, additional professionals may be involved. For example, a speech-language pathologist (SLP) or speech therapist (ST) may be consulted to help solve speech or communication problems that may affect someone’s job performance. Several other professionals can be involved to assist in other aspects, such as setting up the office area for easy access, selecting proper furniture and custom-fitting it for the individual, and training to develop specific job skills. For more information on the role of rehabilitation in helping individuals with MS, readers may call MSAA at (800) 532-7667 and request a copy of the Winter 2004 issue of The Motivator. To view or download a copy of the article (or the entire issue), MSAA’s website may be visited at www.mymsaa.org.
Bruce advises her clients to “chunk” their problem of how to return or stay in the workforce. “By chunking, I mean breaking down what has to be done into small pieces or chunks. You don’t have to solve every problem at one time,” she says. “It’s better to figure out what the biggest problem is and take care of it. Then move down the ladder to address each of them.”
Contacting the local Medicare office is also a good idea for anyone planning to enter or return to the workforce after taking time off to be treated for MS. Medicare has different rules regarding employment and benefits, and clarification may be necessary in order to fully understand one’s options. The Center for Medicare and Medicaid Services can be reached at (800) 633-4227.
Starting a Home-Based Business
After examining their career choices and symptoms, some people with MS choose to start their own home-based businesses. The federal government can assist people in need of VR to achieve this goal. According to the Rehabilitation Act Amendments of 1998 regarding self-employment, each state’s VR office must include this option as part of a person’s overall evaluation.
The Region VI Rehabilitation Continuing Education Program also maintains a website on self-employment and entrepreneurship with disabilities at http://www2.ed.gov/students/college/aid/rehab/catrcep.html. The program publishes Getting Down to Business: A Blueprint for Creating and Supporting Entrepreneurial Opportunities for Individuals with Disabilities. To obtain a copy of this helpful publication, individuals may log onto the website for the United States Department of Labor Office of Disability Employment Policy at www.dol.gov; readers may also contact this office at (866) 633-7365 (voice), or (877) 889-5627 (TTY). Ideas for home-based businesses abound. Entrepreneurs with MS work in many fields and find that running home-based businesses offers the flexibility they need to manage their symptoms while remaining productive and successful at work. Here are some home-based business ideas to consider:
- massage therapy
- aromatherapy (using fragrance to promote healing)
- interior decorating
- telephone or website sales
- graphic design
- headhunter (matching candidates with high-level job opportunities)
- tutoring children or adults on basic skills or school subjects
- selling dried flowers or other craft items
- personal shopping (helping others do errands and shop)
- personal coaching (helping others achieve goals in life through motivation and goal setting)
- family and individual therapy or counseling
Happy and Productive
Armed with this information and a positive attitude, individuals with MS can often find meaningful work. MS may change one’s life, but it doesn’t have to keep one from finding new and fulfilling career opportunities.
“With most job fields wide open to people with ability who happen to have a physical disability, there is no longer any excuse not to select a career based on what you truly wish to do for the rest of your life,” writes Sharon F. Kissane in her book, Career Success for People with Physical Disabilities. “This is not to say the path is easy. But, the path is there, if you choose to follow your dream.”
About the Author
A former editor of The Motivator, Christine Norris is now a freelance writer specializing in health and wellness issues.
The following publications are available through MSAA’s Lending Library. Please see page 60 for more information.
- Kissane S.F., Career Success for People with Physical Disabilities, VGM Career Horizons, 1997.
- Perkins L., Perkins S., Multiple Sclerosis: Your Legal Rights, second edition, Demos Medical Publishing Inc., New York, 1999.
- Rumrill Jr., P., Employment Issues and Multiple Sclerosis, Demos Vermande, New York, 1996.
- Stolman M.D., A Guide to Legal Rights for People With Physical Disabilities, Demos Publications Inc., New York, 1994.
Listed below are some additional publications that readers may find to be helpful:
- Abrams R., Six-Week Start-Up: A Step-by-Step Program for Starting Your Business, Making Money, and Achieving Your Goals, The Planning Shop, San Francisco, 2004.
- Abrams R., What Business Should I Start: Seven Steps to Discovering the Ideal Business for You, The Planning Shop, San Francisco, 2003.
- Dinnocenzo D.A., 101 Tips for Telecommuters: Successfully Manage Your Work, Team, Technology, and Family, Berrat-Koehler Publishers Inc., 1999.
- Dziak M., Telecommuting Success: A Practical Guide for Staying in the Loop While Working Away from the Office, Park Avenue, 2001.
For More Information
For information on the Vocational Rehabilitation System and assistive technology, readers may click on >www.techconnections.org/legislation/RehabAct/Q1-1.cfm (link no longer active). Readers may also consult the following agencies.
ADA Information Line
United States Department of Justice
(800) 514-0301 (voice) or -0383 (TTY)
Georgia Tech Center for Assistive
Technology and Environmental Access
490 Tenth Street, NW
Atlanta, GA 30332-0156
(800) 726-9119 (toll-free voice/TTY)
United States Architectural and Transportation Barriers
(800) 872-2253 (voice)
(800) 993-2822 (TTY)
Disability and Business Technical Assistance Centers
(ADA and IT Centers)
(800) 949-4232 (voice/TTY)
United States Department of Labor
Job Accommodation Network
(800) 526-7234 (voice/TTY)
United States Department of Transportation
(888) 446-4511 (voice)
United States Equal Employment Opportunity Commission
(800) 669-4000 (voice) or -6820 (TTY)
Tools and Techniques for MS Teleworkers
By Grant Olsen
Both employers and members of the MS community stand to benefit from the continued interest in telework. This term refers to individuals working outside of the office through the help of telecommunications and other technology, including the personal computer, internet, and fax.
Jane Anderson, Director of the Midwest Institute for Telecommuting Education (MITE), testified before the United States House Committee on Small Business in 2002 and specifically cited a growing demand for telework from individuals with MS. To capitalize on this trend and to work effectively from home, individuals with MS may opt to use a number of additional tools to complement their “digital” (computer-related) appliances. Such devices may include:
- Cooling vest
- Fan and/or air conditioner
- Writing (grip) aids
- Tape recorder (to take notes)
- Page holder or book holder
- Adjustable lamps and other lighting
- Mouth stick (to turn pages or turn tape recorder on and off)
Furthermore, various strategies and techniques may be employed by members of the MS community to develop an accommodating telework environment:
- Situate the work area in close proximity to the restroom to reduce travel time
- Minimize the amount of travel by combining trips away from the work area
- Take scheduled, frequent breaks throughout the workday
- Adjust the work schedule to avoid hot weather
- Utilize reminders, such as notes, calendars, and organizers, to assist with memory
- Acquire written instruction regarding duties and tasks to aid memory
- Obtain large-print material when available
- Receive a copy of co-workers’ notes when necessary
- Rely on written communication, including email and faxes, if speech is impaired
This information was adapted from: The Region 7 Rehabilitation Continuing Education Program (of the Rehabilitation Services Administration), Handbook of Disabilities; The Job Accommodation Network, Accommodating People with Multiple Sclerosis; The Cornell University Program on Employment and Disability, Workplace Accommodations for People Living with Multiple Sclerosis; and Tech Connections, Case Study Bulletin – Spring 2003.