Accommodation and Compliance Series:
Employees with Muscular Dystrophy
JAN’s Accommodation and Compliance Series is designed to help employers determine effective accommodations and comply with Title I of the Americans with Disabilities Act (ADA). Each publication in the series addresses a specific medical condition and provides information about the condition, ADA information, accommodation ideas, and resources for additional information.
The Accommodation and Compliance Series is a starting point in the accommodation process and may not address every situation. Accommodations should be made on a case by case basis, considering each employee’s individual limitations and accommodation needs. Employers are encouraged to contact JAN to discuss specific situations in more detail.
For information on assistive technology and other accommodation ideas, visit JAN's Searchable Online Accommodation Resource (SOAR) at http://AskJAN.org/soar.
What is MD?
MD refers to a group of genetic diseases marked by progressive weakness and degeneration of the skeletal, or voluntary, muscles, which control movement. The muscles of the heart and some other involuntary muscles are also affected in some forms of muscular dystrophy, and a few forms involve other organs as well. The major forms of muscular dystrophy are myotonic, Duchenne, Becker, limb-girdle, facioscapulohumeral, congenital, oculopharyngeal, distal, and Emery-Dreifuss. All forms of muscular dystrophy are caused by gene defects (Muscular Dystrophy Association, 2001).
What are the symptoms of MD?
Individuals with MD usually exhibit contractures, a condition often associated with shortened muscles around the joints. Due to the abnormal and sometimes painful positioning of the joints, most individuals with MD have extreme fatigue and weakness as well as speech, mobility, and fine motor limitations. In addition, scoliosis, or curvature of the spine, is common (Muscular Dystrophy Association, 2001).
Who gets MD?
MD is generally inherited but in some cases no family history of the disease may exist. MD can affect people of all ages. While some forms first become apparent in infancy or childhood, others may not appear until middle age or later (Muscular Dystrophy Association, 2001).
How is MD treated?
Moderate exercise programs and physical therapy can minimize contractures, and certain exercises may prevent or delay scoliosis. Surgery can sometimes be helpful in relieving muscle shortening. In addition, respiratory care for some individuals with MD may also help. Medications known as corticosteroids have been found to slow muscle destruction in some forms of MD, but can have serious side effects. Researchers are testing new corticosteroids that may have fewer side effects. The prognosis of MD varies according to the type of MD and the progression of the disorder (Muscular Dystrophy Association, 2001).
Is MD a disability under the ADA?
The ADA does not contain a list of medical conditions that constitute disabilities. Instead, the ADA has a general definition of disability that each person must meet on a case by case basis (EEOC Regulations . . . , 2011). A person has a disability if he/she has a physical or mental impairment that substantially limits one or more major life activities, a record of such an impairment, or is regarded as having an impairment (EEOC Regulations . . . , 2011).
However, according to the Equal Employment Opportunity Commission (EEOC), the individualized assessment of virtually all people with MD will result in a determination of disability under the ADA; given its inherent nature, MD will almost always be found to substantially limit the major life activity of neurological function (EEOC Regulations . . . , 2011).
Note: People with MD may develop some of the limitations discussed below, but seldom develop all of them. Also, the degree of limitation will vary among individuals. Be aware that not all people with MD will need accommodations to perform their jobs and many others may only need a few accommodations. The following is only a sample of the possibilities available. Numerous other accommodation solutions may exist.
Questions to Consider:
- What limitations is the employee with MD experiencing?
- How do these limitations affect the employee and the employee’s job performance?
- What specific job tasks are problematic as a result of these limitations?
- What accommodations are available to reduce or eliminate these problems? Are all possible resources being used to determine possible accommodations?
- Has the employee with MD been consulted regarding possible accommodations?
- Once accommodations are in place, would it be useful to meet with the employee with MD to evaluate the effectiveness of the accommodations and to determine whether additional accommodations are needed?
- Do supervisory personnel and employees need training regarding MD?
Activities of Daily Living:
- Allow use of a personal attendant at work
- Allow use of a service animal at work
- Make sure the facility is accessible
- Move workstation closer to the restroom
- Allow longer breaks
- Refer to appropriate community services
- Reduce or eliminate physical exertion and workplace stress
- Schedule periodic rest breaks away from the workstation
- Allow a flexible work schedule and flexible use of leave time
- Allow work from home
- Implement ergonomic workstation design
Fine Motor Impairment:
- Provide alternative computer access
- Provide alternative telephone access
- Provide arm supports
- Provide writing and grip aids
- Provide a page turner and a book holder
- Provide a note taker
- Provide a scooter or other mobility aid if walking cannot be reduced
- Provide parking close to the work-site
- Provide an accessible entrance
- Install automatic door openers
- Provide an accessible route of travel to other work areas used by the employee
- Make sure materials and equipment are within reach range
- Move workstation close to other work areas, office equipment, and break rooms
Medical Treatment Allowances:
- Provide flexible schedules
- Allow a self-paced workload with flexible hours
- Allow employee to work from home
- Provide part-time work schedules
- Provide speech amplification, speech enhancement, or other communication device
- Use written communication, such as email or fax
- Transfer to a position that does not require a lot of communication
- Allow periodic rest breaks
- Develop strategies to deal with work problems before they arise
- Provide sensitivity training to coworkers
- Allow telephone calls during work hours to doctors and others for support
- Provide information on counseling and employee assistance programs
Situations and Solutions:
An engineer with MD had difficulty grasping frequently used files. He was accommodated with a desktop carousel.
A student with MD was limited in her use of the computer. She was accommodated with the Magic Wand Keyboard, a miniature computer keyboard and mouse. The keyboard worked with the slightest touch of a wand and no force was needed to activate the keys.
A staff employee with MD who operated a power chair with a joystick was having difficulty opening doors. The individual could not grasp door handles and was accommodated with automatic door openers.
A physician with MD was having problems getting up from a seated position after consulting with patients. The individual was accommodated with a lift cushion for his chair.
A counselor was having difficulty performing psychological evaluations due to cognitive limitations. Her manager agreed to provide written job instructions when possible, and make memory aids such as schedulers or organizers readily available.
A service worker was having difficulty maintaining a full workday due to fatigue. The individual was accommodated with periodic rest breaks away from the workstation, a flexible work schedule, flexible use of leave time, parking close to the work-site, and periodic work from home.
A technical writer with MD was having difficulty reaching her workstation. The individual was accommodated with a flat screen monitor, monitor arm, keyboard tray, footrest, headset, and strategically placed filing racks.
A secretary with MD was restricted from typing information into her computer due to fine motor limitations. She was accommodated with speech recognition.
A manager with MD was having difficulty with daily living needs. The individual was allowed to bring her service animal to work and provided an accessible restroom.
A lawyer with MD was having difficulty climbing stairs. He was accommodated with a stair lift.
An office worker with MD who distributed mail was having difficulty carrying mail to workstations. He was accommodated with a cart.
A writer with MD had severe hand weakness and was limited in her ability to use the keyboard. The individual was accommodated with a miniature keyboard with light touch features.
There are numerous products that can be used to accommodate people with limitations. JAN's Searchable Online Accommodation Resource (SOAR) at http://AskJAN.org/soar is designed to let users explore various accommodation options. Many product vendor lists are accessible through this system; however, upon request JAN provides these lists and many more that are not available on the Web site. Contact JAN directly if you have specific accommodation situations, are looking for products, need vendor information, or are seeking a referral.
EEOC Regulations To Implement the Equal Employment Provisions of the Americans With Disabilities Act, as Amended, 29 C.F.R. § 1630 (2011).
Muscular Dystrophy Association. (2001). Facts about Muscular Dystrophy (MD). Retrieved July 6, 2005, from http://www.mdausa.org/publications/fa-md.html (no longer available)