One Patient's Positive Perspectives

Prognosis and Hope: Most people with lupus are able to continue to work. However, some may need changes to their work environment and schedules, such as flexible work hours, job-sharing, and telecommuting.  My lupus has affected my professional life, and required some major accommodations the help me to work under the Americans with Disabilities Act (ADA.)

I won’t kid you, it takes work!

A good ADA accommodation takes some work!

I won’t try to kid you or say that working out a successful ADA accommodation is easy, but agreeing on one that works for you and your employer can mean being able to keep working with your lupus and keeping your career or job.  I can be tough enough to figure out that you may even need to ask an advocate or attorney to help you, especially if you are struggling with CNS involvement like I was when I formally first requested ADA accommodation.

The ADA prohibits disability discrimination

What is the ADA?

The ADA is a federal law first passed by congress in 1990, that prohibits discrimination against people with disabilities such as lupus in employment, transportation, public accommodation, communications, and governmental activities.  Unfortunately, every lupus patient does not have the same success finding an employment situation with accommodations right for their lupus.

Lupus awareness is critical for employers understanding their workplace responsibilities under the ADA and their employees’ rights for reasonable ADA accommodation.  The employee has to ask for and suggest a reasonable accommodation, usually in writing.  Under the ADA, several criteria about the employee and their disability must first be met.  The  ADA requirements were recently updated by congress in 2008 so they are now even more favorable to employees, and the Equal Employment Opportunity Commission (EEOC) passed a series of regulations in 2009 and 2011 to carry out job related parts of the Americans With Disabilities Act Amendments Act.

Requesting ADA Accommodation at Work

Sample ADA Accommodation Request Form

My employer gave me a form to fill out to request an ADA accommodation that I used to start the process.  On the form I told how my lupus met the legal requirements that made me covered by the ADA, and then I suggested some reasonable  accommodations that would help me keep my job and be able to do my work.  I attached a detailed brochure “What is Lupus” from the Lupus Foundation of America and a narrative letter from my rheumatologist that explained my limitations and supported the accommodations I requested.  I also included some printed information about Lupus from the U.S. Department of Labor Job Accommodation Network web site that I will talk more about below.

Employer and employee talk to agree upon reasonable accommodation

Finally, conversation between the employer and employee helps them reach agreement about reasonable accommodations.  My supervisors and I agreed to change my work schedule to allow me to arrive later in the morning and leave later in the evening to accommodate my lupus symptoms that are most disabling in the early morning hours, and for me to work when I am the sharpest mentally.  Also, we agreed that on days my lupus was in severe flare, I could telecommute and work from home when permitted by my work responsibilities.

ADA Accommodation in a Successful Career

I have been successful keeping my thirty year career in law, first as a paralegal and then as a government law department administrator for the past 22 years.  Because of continuing to work, I am not a burden on the social security system, and am able to get and pay for my own medical care through my group insurance program.  I am now qualified for a local government pension and will be able to work the rest of a full career to my normal retirement age, because of the support of my bosses and their implementation of the ADA accommodations I needed.

The ADA accommodation clearly helps me, but it also protects my supervisors from being accused of being unfair to other employees by making special scheduling or telecommuting arrangements for me.  Others at work cannot really say they are being unfair, or inequitable, since the idea of workplace equity does not apply the same to employees covered by the ADA, who are not similarly situated to other healthy employees.  My ADA accommodation formally places me into a protected status given by the ADA, that acknowledges I am working under a different situation than most others in my office.

The Technical Assistance Manual: Title I of the ADA provides this important information:

Who is protected by the ADA?

Who Is Protected by Title I of the ADA?

“The ADA prohibits employment discrimination against ‘qualified individuals with disabilities.’ A qualified individual with a disability is:  An individual with a disability who meets the skill, experience, education, and other job-related requirements of a position held or desired, and who, with or without reasonable accommodation, can perform the essential functions of a job.

To understand who is and who is not protected by the ADA, it is first necessary to understand the Act’s definition of an “individual with a disability” and then determine if the individual meets the Act’s definition of a “qualified individual with a disability.”

Meeting the ADA Requirements

The Definition of a Disability

The ADA definition of person with a disability is very specific, and changed by Congress in 2009. A person with a “disability” is an individual who:

  • has a physical or mental impairment that substantially limits one or more of his/her major life activities;
  • has a record of such an impairment; or
  • is regarded as having such an impairment.

Help and Free JAN Consultation

This site is a wealth of information!

The Job Accommodation Network (JAN) is a free consulting service that provides information about job accommodations, the Americans with Disabilities Act (ADA), and ability of people with disabilities to get and keep their jobs.

Job Accommodation Network – West Virginia University
PO Box 6080 Morgantown, WV 26506-6080 — Toll Free: (800)526-7234 — TTY: (877)781-9403 — Fax: (304)293-5407 —

Finding suggestions for reasonable lupus accommodations

Links to Suggested Reasonable Accommodations for Lupus

JAN  has these great resources for learning more about reasonable accommodations for lupus (check out all the live links below):

  1. Accommodation and Compliance Series: Employees with Lupus, By Linda Carter Batiste, J.D.
  2. Searchable Online Accommodation Resource(SOAR) – Step 2: Select a lupus limitation to follow one of these links to more information:
    1. Individual has difficulty with activities of daily living.
    2. Individual has cognitive limitations.
    3. Individual is sensitive to extreme temperatures (including Raynaud’s Phenomenon).
    4. Individual has gross motor limitations.
    5. Individual experiences fatigue and weakness.
    6. Individual experiences migraine headaches.
    7. Individual has photo-sensitivity.
    8. Individual has a vision impairment.
  3. Effective Accommodation Practices Series: Lupus – Job Accommodations for People with Lupus – a downloadable MS Word format document.
  4. Lupus Organizations
  5. Accommodation Ideas By Occupation or Industry
  6. Information by Product or Service

There is a lot to read at the ADA website, but it is worth the trouble to learn about what you can do to claim your rights under the law.

If you are unsure where to start, JAN offers help and consultation  for people or their advocates.  If you contact JAN for advice, you should expect these typical questions:

  • What is your disability or limitation?
  • Are you now employed or seeking information about employment or self-employment?
  • Do you feel that you are being discriminated against because of your disability?
  • Do you want to know your rights under the ADA and how to file a complaint?

Questions go to one of JAN’s professional consultants experienced in the field of rehabilitation.


Comments on: "Prognosis and Hope: Lupus Fact #30 – Working with lupus and ADA accomodations" (1)

  1. […] Prognosis and Hope: Lupus Fact #30 – Working with lupus and ADA accomodations ( […]

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