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About Huntington's Disease
Huntington’s disease (HD) is a hereditary, degenerative brain disorder for which there is, at present, no treatment to slow the progression of symptoms and no cure. Most individuals with HD begin to exhibit symptoms between the ages of 30 to 50, and are likely to be employed when first diagnosed. As this genetic disease progresses, it will affect cognitive, motor, and behavioral functioning.
Motor issues often include involuntary movements, difficulty with speech and swallowing, lack of coordination, and fatigue and weakness. Many cognitive functions become limited, such as memory, decision making, critical thinking, multitasking and concentration. Behavioral issues include anxiety, depression, mood swings, and stress intolerance, as well as irritability and impulsivity.
Huntington's Disease 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 Huntington's Disease
People with Huntington's disease 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 Huntington's disease 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.
An aircraft mechanic had to bond hardware on mechanisms, but when he was hungry his tremors that stemmed from Huntington’s would flare.
His employer offered a modified schedule so the employee could eat throughout the day and also offered weighted gloves, wristbands, and an arm stabilizer for the tremor symptoms.
A JAN customer was losing her ability to speak due to Huntington’s disease.
JAN suggested a range of accommodations, from high tech speech augmentation devices to low tech communication boards.
An employee of a mortgage company wasn’t meeting production standards because of typing limitations due to his Huntington’s.
The employer purchased word prediction software and looked into speech recognition software he may be able to use in the future.
A bill and account collector had trouble concentrating due to Huntington’s disease.
JAN suggested and the employer ended up moving the employee’s cubical, using higher cube walls, providing noise absorbing paneling and noise canceling headphones, designating time that is phone-free and visitor-free, changing work hours to quieter times of day, and permitting telework.
A construction worker had Huntington’s disease related depression.
He requested ADA leave to get treatment and a reduced work schedule when he returned back to work, he was accommodated with leave and a modified schedule.
A medical assistant who worked at a hospital had trouble walking because of Huntington’s disease.
JAN explained restructuring the shift so the employee was working in one specific area at a time and reducing walking around the work-site. JAN also discussed mobility devices, sitting while working, handrails along the paths she uses, and portable charts. The employee requested these accommodations, and was accommodated.