One day at work you notice something is wrong.  You are moving more slowly, or perhaps your hand shakes at times.  Eventually, as the strange symptoms progress, you see a doctor.  You hear the dreaded words  “You have Parkinson’s Disease”.   Now what do you do?  You are afraid to tell your boss, for fear of losing your job.  You don’t want to confide in your co-workers, even though they have begun to suspect something is amiss.So you quietly try to get the job done, even though some days it becomes extremely difficult to complete your tasks.  It is clear that you are going to need some kind of accomodations at work, but you don’t know how to ask without “outing” yourself.

I asked my husband, the retired labor attorney, for some advice on this topic, since several of my Parkie friends were concerned about what to say at work.  He referred me to Robin Dal Soglio, who had been an employment law partner at his law firm and now was a partner in her own firm.  She met with a group of us last week to talk about Parkinson’s in the workplace.

As employees, we don’t always know what our rights are if we have disabilities.  Many people are under the assumption that if they say something, they will lose their job.  Not true, according to Dal Soglio.   The most important things you need to know are:

• You ARE NOT required to disclose your “disability” to anyone at work.THE ONLY TIME THEY  NEED TO KNOW IS IF IT MIGHT AFFECT YOUR ABILITY TO PERFORM THE JOB.
• There are two sets of federal laws (and many states, like California, have similar laws) that most like apply to your employment situation:
  • Americans with Disabilities Act (ADA)
  • Family and Medical Leave Act (FMLA)
• There is a difference between the “disability” you have and whether that disability raises job-related limitations.  Information about your disability includes: its definition, how you acquired it, how it affects your life, its prognosis, any medical treatments, etc. Employers generally have neither the need nor the right to know these things.
• If your disability does raise job-related limitations, the ADA requires your employer to provide you with reasonable accommodations on the job to help you to be able to do essential functions of the job.  The employer is required to discuss these issues with you; what is “reasonable” and what is an “essential function” have to be determined on a case-by-case basis.
•  The FMLA act gives you 12 weeks off per year, which can be taken in increments as small as 1 hour (so you can go to that much needed PT session or exercise class) to the extent necesary to take care of disability.  This might involve time off work for extended periods of time, time off to attend medical apointments, switching to part-time work for periods of time and possibly other accommodations depending on the specific factors involved.

Sometimes we need to look at things through a different lens, our employer’s.  It has a mission to accomplish and we must be able to contribute to that mission.  As People with Parkinson’s, we cannot look only at our needs and disabilities.  Those of us who are still working must also be mindful of how management has to accommodate our “disabilities” and how possible accommodations affect our contributions to the workplace.   This is why the law requires good faith communications between the employer and employee about possible reasonable accommodations and what the essential functions of the job are. Good faith discussions that enable you to continue working with reasonable accommodations for your disability can and frequently do benefit both you and your employer.

Dal Soglio gave us a list of workplace accommodations posted by the Job Accommodation Network (JAN).  This website can be very helpful for navigating the labyrinth of laws protecting you in the workplace.

The Michael J Fox Foundation also published two guides on Parkinson’s at work.  You can download them here.

The bottom line is that you have control over when, how and even whether you disclose your Parkinson’s at work. If you are not sure what to do, check out the resources above or speak to an attorney who specializes in employment law.   Armed with the right information, you can work with your employer to determine how you can continue to work in your present position, even with Parkinson’s.

 

Many thanks to Joel Krischer and Robin Dal Soglio for providing this information.