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Accommodation and Compliance Series:
Employees with Muscular Dystrophy
By Linda Carter Batiste, J.D.

Preface

Introduction

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://www.jan.wvu.edu/soar.

Information about Muscular Dystrophy (MD)

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).

MD and the American with Disabilities Act

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 (EEOC, 1992). Therefore, some people with MD will have a disability under the ADA and some will not.

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 such an impairment (EEOC, 1992). For more information about how to determine whether a person has a disability under the ADA, visit http://www.jan.wvu.edu/corner/vol02iss04.htm.

Accommodating Employees with MD

(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:

1. What limitations is the employee with MD experiencing?

2. How do these limitations affect the employee and the employee's job performance?

3. What specific job tasks are problematic as a result of these limitations?

4. What accommodations are available to reduce or eliminate these problems? Are all possible resources being used to determine possible accommodations?

5. Has the employee with MD been consulted regarding possible accommodations?

6. 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?

7. Do supervisory personnel and employees need training regarding MD?

Accommodation Ideas:

Large Blue Triangle Bullet Activities of Daily Living:

Small Triangle Blue Bullet Allow use of a personal attendant at work
Small Triangle Blue Bullet Allow use of a service animal at work
Small Triangle Blue Bullet Make sure the facility is accessible
Small Triangle Blue Bullet Move workstation closer to the restroom
Small Triangle Blue Bullet Allow longer breaks
Small Triangle Blue Bullet Refer to appropriate community services
Small Triangle Blue Bullet Provide access to a refrigerator

Large Blue Triangle Bullet Fatigue/Weakness:

Small Triangle Blue Bullet Reduce or eliminate physical exertion and workplace stress
Small Triangle Blue Bullet Schedule periodic rest breaks away from the workstation
Small Triangle Blue Bullet Allow a flexible work schedule and flexible use of leave time
Small Triangle Blue Bullet Allow work from home
Small Triangle Blue Bullet Implement ergonomic workstation design
Small Triangle Blue Bullet Provide a scooter or other mobility aid if walking cannot be reduced

Large Blue Triangle Bullet Fine Motor Impairment:

Small Triangle Blue Bullet Implement ergonomic workstation design
Small Triangle Blue Bullet Provide alternative computer access
Small Triangle Blue Bullet Provide alternative telephone access
Small Triangle Blue Bullet Provide arm supports
Small Triangle Blue Bullet Provide writing and grip aids
Small Triangle Blue Bullet Provide a page turner and a book holder
Small Triangle Blue Bullet Provide a note taker

Large Blue Triangle Bullet Gross Motor Impairment:

Small Triangle Blue Bullet Modify the work-site to make it accessible
Small Triangle Blue Bullet Provide parking close to the work-site
Small Triangle Blue Bullet Provide an accessible entrance
Small Triangle Blue Bullet Install automatic door openers
Small Triangle Blue Bullet Provide an accessible restroom and break room
Small Triangle Blue Bullet Provide an accessible route of travel to other work areas used by the employee
Small Triangle Blue Bullet Modify the workstation to make it accessible
Small Triangle Blue Bullet Adjust desk height if wheelchair or scooter is used
Small Triangle Blue Bullet Make sure materials and equipment are within reach range
Small Triangle Blue Bullet Move workstation close to other work areas, office equipment, and break rooms

Large Blue Triangle Bullet Medical Treatment Allowances:

Small Triangle Blue Bullet Provide flexible schedules
Small Triangle Blue Bullet Allow a self-paced workload with flexible hours
Small Triangle Blue Bullet Allow employee to work from home
Small Triangle Blue Bullet Provide part-time work schedules

Large Blue Triangle Bullet Speech Impairment:

Small Triangle Blue Bullet Provide speech amplification, speech enhancement, or other communication device
Small Triangle Blue Bullet Use written communication, such as email or fax
Small Triangle Blue Bullet Transfer to a position that does not require a lot of communication
Small Triangle Blue Bullet Allow flexible scheduling and flexible use of leave time
Small Triangle Blue Bullet Allow periodic rest breaks

Large Blue Triangle Bullet Stress Intolerance:

Small Triangle Blue Bullet Develop strategies to deal with work problems before they arise
Small Triangle Blue Bullet Provide sensitivity training to coworkers
Small Triangle Blue Bullet Allow telephone calls during work hours to doctors and others for support
Small Triangle Blue Bullet 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.

Products:

There are numerous products that can be used to accommodate people with limitations. JAN's Searchable Online Accommodation Resource (SOAR) at http://www.jan.wvu.edu/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.

Resources

References

Equal Employment Opportunity Commission. (1992). A technical assistance manual on the employment provisions (title I) of the Americans with Disabilities Act. Retrieved April 29, 2005, from http://www.jan.wvu.edu/links/ADAtam1.html

Muscular Dystrophy Association. (2001). Facts about Muscular Dystrophy (MD). Retrieved July 6, 2005, from http://www.mdausa.org/publications/fa-md.html

If you have a question about accommodations and/or the employment provisions of the Americans with Disabilities Act (ADA), click here:
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