Episode 57: Talking to Your Employer About PD Series Part 1: Where to Begin?

Dan Keller 0:09

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller at the Parkinson's Foundation. We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

While some people with Parkinson's disease are more open about revealing it, others may prefer to be more private, especially in the early stages when symptoms may not be obvious. However, employment situations can present a dilemma: if or when to disclose one's condition to the boss or even to coworkers. Disclosure of PD to management generally invokes provisions of the Americans with Disabilities Act, or ADA. The Act provides benefits to an employee in terms of limiting job discrimination and requiring the employer to make reasonable accommodations to do the job, but an employee should understand what the ADA covers and what it doesn't. Do his or her homework before talking with management teams and have a clear picture of what to accomplish in the conversation. I spoke with occupational therapist Julia Wood of the University of Pennsylvania Parkinson's Rehabilitation Center, starting off with a fairly basic question about revealing one's medical condition at work. What about the issue of talking to your employer about a disability, specifically Parkinson's disease? Is it good to tell them about it? Do you have to tell them specifically what you have, and when should you do it?

Julia Wood 2:06

You know, there's really no right or wrong, you know, or absolutely black and white correct answer to that. But a rule of thumb is, you know, with Parkinson's disease, people are protected under the Americans with Disabilities Act. However, if you don't disclose to your employer that you have a disability, you are not protected. So the idea is that it's important to disclose any issues that you're having that might affect your job performance before those become an issue to where you could be terminated. Now, you do not just have to disclose that you have Parkinson's disease, but you do have to disclose that you have a condition that's causing impairments that could possibly affect your work performance. So then you can request reasonable accommodations under the ADA, or the Americans with Disabilities Act.

Dan Keller 2:51

Does that apply universally to any size company, or is anybody at risk if they're working for, say, too small a company?

Julia Wood 2:57

So it applies to companies with 15 or more employees. So if the company is smaller than 15 employees, they would not be protected under that.

Dan Keller 3:07

So it sounds like it's probably better to get it established that you may need accommodation early. If you don't disclose, does that mean that they're not required to accommodate you?

Julia Wood 3:19

Absolutely. So if you don't disclose to your employer, and there are, say, changes to your job performance—maybe you're not completing tasks in a timely manner, or you've made errors in your work—and they decide to terminate you, then you would not be protected if you have not disclosed.

Dan Keller 3:37

Is there any way, or is there a resource that would help you tell the employer what sort of accommodations you need depending on what your disability is or becomes?

Julia Wood 3:49

Absolutely. So there are a lot of resources online that you can look up, specific to Parkinson's, that kind of walk you through some steps for disclosing to your employer. Basically, you know, it's advised that you find an appropriate time to talk to the employer, to Human Resources; that you kind of have some bullet points that you want to say to frame the conversation, because it can be emotional, of course, discussing that. Often it's recommended that you discuss with your physician and maybe even your family, like your spouse or you know, family, to kind of walk through and talk through what that conversation might look like.

And there's a great resource online too, called the Job Accommodation Network, where if you do need to request reasonable accommodations, you can go to this website. You can look it up by condition. So you would select Parkinson's disease, and then it takes you to a page that shows what some reasonable accommodations for different aspects of Parkinson's impairments might look like. Executive function is often a problem for people, so doing multitasking, complex task organization, which is involved in so many jobs we have now with computer work and whatnot; also tremor or balance problems. And so you're able to kind of click on the issue that you feel like you have, and it walks you through reasonable accommodations that you could ask for and you could discuss with your employer.

Dan Keller 5:11

Would the employer inform other employees, or is it private? And should the employee, him or herself, talk to their colleagues that they work with? I mean, they might say, "Oh, that guy looks like he's been drinking during lunch because he's tipsy,"—he's got a balance issue.

Julia Wood 5:28

So absolutely, the employer cannot disclose to other employees that someone is having an issue, just like, you know, technically, if you, you know, call in on a family emergency or sickness, they're not supposed to tell your colleagues why you're out for the day. And it is important to note too, though, that let's say you haven't disclosed to your employer yet—and I actually witnessed this with an individual—but they did disclose to a colleague at work, and the colleague was trying to do them a favor and let the employer know, "Hey, why don't you take it easy on this individual? They were diagnosed with Parkinson's," and the person was terminated. So who knows why that happened? When I worked with this woman, it was several years post her job being terminated. Was it they thought the healthcare costs would be too much? Or maybe they thought she wouldn't be able to do her job performance soon? Maybe they had noticed something. Who knows? But you know, obviously the friend meant no harm and had no idea that this would cause a problem. So you do want to be selective, I think, about who you tell and when you tell people, but it is your right to privacy too. We all have that right that even if we disclose to an employer, it does not mean that we have to disclose to others around us.

Dan Keller 6:38

Is it worth consulting a lawyer before you have the conversation with your employer, just to nail down the legalities?

Julia Wood 6:46

It can be, absolutely. And then sometimes too, there are local resources in different areas that you can look to that protect people with disabilities. So you can search that online and see if there are different resources that you can consult with. The Americans with Disabilities website has a lot of resources as well that kind of walk you through when to consult or who you can speak to.

Just an example: maybe you've seen another employee, like a colleague, go through issues where you felt like the employer was not supportive or challenged it in some way. Or maybe you've recently had some issues where your performance was not optimal, or you've had some problems and you're worried now that that will be seen as part of your Parkinson's. I think you have to trust your gut and your instinct, and maybe talking, like I said, with a spouse or your doctor about this—like, "Should I consult an attorney before I disclose?"—to really know that you have support and you have your case kind of, like you said, lined out before you address the issue.

Dan Keller 7:46

Once someone has that conversation with their employer, would the next step be to document it? And would an employer really be amenable to putting it in writing? What was said and agreed that, "Yes, this person has informed me"?

Julia Wood 8:01

Typically, yes. What's going to happen, from my understanding, is that Human Resources, in some way, usually documents that this has been disclosed and what the reasonable accommodations that they've agreed upon are going to be. So there usually is something in writing, and I think it's important to get that in writing as well. Often, what's necessary too is whatever level of impairment that you're having—be it difficulty, say, with keyboarding or writing or doing multitasking—that in some way you have that corroborated by a doctor or your medical team.

So often, as an occupational therapist, I may be working with people on some strategies around computer use; maybe I know they're having issues with their dexterity or fine motor coordination, and I can well document this in my notes and show that I've done assessment, that I'm doing training. The doctor also can have that. So you want to have that discussion with your healthcare team about how we can support you and back up your claims and help get you what you need.

Dan Keller 9:00

Oftentimes, people go to Human Resources thinking they're going to be the advocate for the employee, whereas actually Human Resources is there, oftentimes, to protect the employer. But in this case, it sounds like those things go together. Once the person discloses, the best way to protect the employer is for Human Resources to make sure everything is in order and accommodate the person.

Julia Wood 9:21

Right? Because I think, you know, it's really two-part if you look at it from that angle where think about how expensive it is to replace someone too. You know, I think often it's more feasible and more affordable for the employer to maintain the employee and get them the accommodations, especially if it's something as simple as, like, some software adaptations, or maybe a different keyboard or ergonomic setup, or maybe even just adjustments to their schedule to be able to take medications or take rest breaks. And also, of course, they need to protect themselves, the employer. So if they do end up having to terminate the employee based on something else, they want to show that they have tried to meet those reasonable accommodations and have tried to do what they need to do to be within compliance of the Americans with Disabilities Act.

Dan Keller 10:10

That's all well and good, but there's another component of the workplace, which is your colleagues. So do you have any advice for people about informing their colleagues or not to?

Julia Wood 10:21

Definitely. You know, I view it this way, and I know I've had this conversation with people before because, of course, I'm an employee, and in my company, there are people that I work with, and there are definitely people I think that I would tell before I would tell others as far as who I feel is more trustworthy, you know, who I would feel more comfortable with, even just based on the nature of our relationship. So I think you can think of colleagues almost like your friends. You know, in confidants, you have people you probably tell personal information to, and people that you're like, "Maybe not," because once I tell that individual, everyone's going to know. So I think you do have to use that same discretion in who you tell and when, and just because you tell one colleague doesn't mean you have to tell everyone.

I also sometimes tell people, you know, in this day and age, people are having joint problems, carpal tunnel, you know, knee replacement, hip replacement; there can be a whole myriad of reasons that someone maybe walks differently or isn't swinging their arm—frozen shoulder. So if you're really not comfortable disclosing to someone, and you don't trust that colleague or that individual, and maybe they're asking some questions that are a little too personal, I think it's okay to be like, "Oh, you know, I'm having some shoulder problems," or maybe if they're typing, "I've had some carpal tunnel, I think, lately; I need to see the doctor." I think it's okay to kind of brush the person off, because I really stand by, with all of my clients, their right to privacy; that's very, very important. And if you feel someone's going to view you differently, or, you know, maybe gossip or be derogatory toward you if you disclose, then you have every right to keep that personal and private.

Dan Keller 11:59

I suppose, in some situations, say you're working as a team—you're working closely with other colleagues. It's a balance between, "Do I tell them because I'm not that close to them, but I don't want them to think I'm slacking off in the team?" And people often rise to the occasion once they know you have some problem and don't give you a lot of grief.

Julia Wood 12:19

Right, right, absolutely. And I think that, you know, it's okay to maybe say, "You know, I've having some stress. I'm not sure what's going on. I feel like maybe something's going on medically," you know what I mean? "I feel a little slower, or I'm having more trouble doing, you know, two things at once." So I think that definitely you have to know when you feel like you need to let someone know if it's maybe affecting your ability to hold up your end of the job, and what to do about that. So it's a really tricky situation, and I shouldn't just say spouse. Sometimes we have friends, or maybe we have a colleague at work that we trust to talk to about the interactions with other colleagues too, and how to approach that. So I think really getting as much advice and insight as you can from others, and don't hold it alone. There are a lot of people I think that can kind of give some sound advice and help navigate the situation.

Dan Keller 13:11

Is there anything important we've missed, or anything to add?

Julia Wood 13:15

I would say also that often occupational therapy is disregarded within the team with Parkinson's. People are often referred to physical therapy right off the bat. But what's really interesting when you look in the literature is even early on at diagnosis, people can start to have changes to executive function. So many of our jobs, you know, now with computer work and multitasking—and I have a saying too that "schmucks don't get Parkinson's." So I feel that most of my clients are very high-level, high-functioning attorneys, physicians, engineers, lawyers. And I would say it's not just the nature of the profession; if they're a plumber, they're the best plumber there is. They're very driven, motivated people, and so I think often they start to notice those even subtle changes to their work performance early on, even if others aren't noticing it, and that can even trigger some anxiety.

And we know with Parkinson's, anxiety can be an issue as well. So it's important not just to see physical therapy at diagnosis, or to see your doctor, but I think also seeing an occupational therapist, seeing a speech-language pathologist, so that the whole team can look at a holistic perspective of the individual. So, are you having some slowness or issues around work? Are you feeling like you're having more trouble multitasking? Is your confidence down? Are you having some anxiety related to that? Because rather than wait for it to become a huge problem—and like we like to say at our clinic, we don't wait to put out a fire; we try to keep them from starting. So it's a lot easier if you can give someone tools.

Often in the beginning, you know, I work with people on organizational strategies, how to avoid multitasking or prioritize tasks that they have. If you think about a typical day, we all have habits and routines and ways that we approach our work life, and sometimes just a simple adjustment of how you approach that—making lists, maybe it's things you never had to do before, had to think about, but now you simply have a little reminder that pops up on the screen of your computer to take a movement break, or you've got a list of your tasks for the day and you cross them off—but starting some habits like that can help improve people's confidence and keep them working, hopefully, as long as they would like to. So see your OT.

Dan Keller 15:51

To learn more about your legal rights as a person with Parkinson's or care partner, including those provided through the ADA, visit parkinson.org/rights. Parkinson.org/rights for an excellent primer on the subject of talking about one's Parkinson's disease with an employer. Visit parkinson.org/employer to read an article titled "When and how should I talk to my employer and my coworkers?" by Jackie Hunt Christensen, a Minneapolis-based health and environmental activist, artist, and author. She discusses the decision to disclose one's Parkinson's disease, protections and exceptions in the Americans with Disabilities Act, things to do before talking with one's boss, and how to document the conversation. It also lists the phone number for the Job Accommodation Network, a resource provided by the U.S. Department of Labor.

Another document provides a brief overview of the provisions of the ADA. Be sure to join us for the second part of this series on talking to your employer about PD, when we'll have a conversation with the Director of Disability Inclusion at a major global bank talking about how they accommodate their employees with disabilities, followed by comments from a former employee of the bank who has young-onset Parkinson's. As always, PD information specialists are available on our helpline. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life. Today, to that end, we'll be bringing you a new episode in this podcast series every other week. Till then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening.

Julia Wood completed a clinical internship in inpatient neurological rehabilitation at Mayo Clinic Hospital, St. Mary's Campus in Rochester, MN. Julia specializes in treating neurological movement disorders and neurodegenerative conditions at the Dan Aaron Parkinson's Rehabilitation Center at the University of Pennsylvania Parkinson's disease and Movement Disorder Center of Excellence at Pennsylvania Hospital. She also serves in interdisciplinary clinics for patients with atypical Parkinsonism, Huntington's disease, ALS and those considering deep brain stimulation. Julia serves as occupational therapy faculty for the Parkinson’s Foundation ATTP program and as training and certification faculty for the LSVT BIG program. Julia acts as an ambassador for the Davis Phinney Foundation and serves as a facilitator for PD SELF, educating newly diagnosed people with PD in self-efficacy to promote quality of life. She holds certifications in Allied Team Training for Parkinson's®, LSVT BIG, Parkinson's Wellness & Recovery (PWR!), GYRO TONIC ®, G YRO KIN ESIS ® and Pilates. She received her BS in Exercise Science and Wellness from Ball State University and a in occupational therapy from the University of Minnesota.