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About Muscular Dystrophy
Muscular dystrophy 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. Individuals with muscular dystrophy 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 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 is generally inherited but in some cases no family history of the disease may exist. It 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 and the Americans with Disabilities Act
The ADA does not contain a definitive list of medical conditions that constitute disabilities. Instead, the ADA defines a person with a disability as someone who (1) has a physical or mental impairment that substantially limits one or more "major life activities," (2) has a record of such an impairment, or (3) is regarded as having such an impairment. For more information about how to determine whether a person has a disability under the ADA, see How to Determine Whether a Person Has a Disability under the Americans with Disabilities Act Amendments Act (ADAAA).
Accommodating Employees with Muscular Dystrophy
People with muscular dystrophy 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 muscular dystrophy 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 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?
- Once accommodations are in place, would it be useful to meet with the employee to evaluate the effectiveness of the accommodations and to determine whether additional accommodations are needed?
- Do supervisory personnel and employees need training?
Situations and Solutions:
The following situations and solutions are real-life examples of accommodations that were made by JAN customers. Because accommodations are made on a case-by-case basis, these examples may not be effective for every workplace but give you an idea about the types of accommodations that are possible.
A manager with muscular dystrophy was having difficulty with daily living needs.
The individual was allowed to bring her service animal to work and provided an accessible restroom.
A physician with muscular dystrophy 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 secretary with muscular dystrophy was restricted from typing information into her computer due to fine motor limitations.
She was accommodated with speech recognition.
An engineer with muscular dystrophy had difficulty grasping frequently used files.
He was accommodated with a desktop carousel.
A technical writer with muscular dystrophy 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 staff employee with muscular dystrophy 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 student with muscular dystrophy was limited in her use of the computer.
She was accommodated with a miniature computer keyboard and mouse. The keyboard worked with the slightest touch and no force was needed to activate the keys.
A lawyer with muscular dystrophy was having difficulty climbing stairs.
He was accommodated with a stair lift.
JAN Publications & Articles Regarding Muscular Dystrophy
Consultants' Corner Articles
- A Support Person as an Accommodation
- Accommodations for Housekeeping/Janitorial Workers with Motor Impairments
- Accommodations Related to Commuting To and From Work
- Best Practices for Addressing Requests for Ergonomic Chairs
- Confidentiality of Medical Information under the ADA
- Hidden Disabilities: Confidentiality and Travel