Lisa Hoffman 00:00:00
The sponsor of today’s webinar is Neurocrine Biosciences. We greatly appreciate your sponsorship. And now, a little housekeeping before we get started. If you would like to ask a question to our presenter, you can ask that in our Q&A icon at the bottom of your screen.
On the chat button, this is where we will be chatting links that you can use during the webinar itself. We will be chatting a link for slides that you can download from the link right now in your chat, or you can go on to our website and the slides will be there. If you are a health professional looking for your one free CEU from the American Society on Aging, you can also click on the link that we are going to chat now to download the quiz and the application for your CEUs. But remember, it’s only available for 30 days, so you need to complete the form prior to November 27. This will also be available on our website after the live webinar. And as you know, all webinars are recorded for on-demand viewing at a later date. I’d like to get to know who you are. If we can push the first poll, please?
And if you’re viewing on Facebook, unfortunately, you will not be able to take our poll, but you can see in some of the slides further on in our webinar what we’re asking. If you could please tell us which of the following best describes you?
We’re going to give it a little bit of time, and this is really helpful and informative for our presenters as they will be presenting the webinar as we move along. Either health professional, person with Parkinson’s under the age of 50, and telling us a little bit more of the demographics you’re in. If we could push the slide with our results. Let’s see who you are.
This is an interesting dynamic here. The majority are health professionals on our call today, and we welcome you, and we’re very excited for you to be here. And people with Parkinson’s between the ages of 50 and 64, and a lot of others who you are.
Thank you for that poll as well. I’d like to share another poll with you because we’re really curious.
Lisa Hoffman 00:02:26
Can we push the other poll, please? And if you are a person with Parkinson’s or a care partner, what was the age of diagnosis? Now, as we said, our series is focusing on young-onset PD. This may have been many years ago for you, or you’re currently in this age group of under 50, so we’re really curious of who you are. Thank you for completing the form. And if you’re ready, let’s see the results.
All right. Hello to everybody in their 50s. Thank you for joining us here today. And for the others, we have kind of a nice bell curve here of what’s going on, of who’s listening. Welcome. Thank you for pushing the poll.
I’d like to now introduce our speakers. We’re really very excited to have two engaging and interesting presenters today in the field of doing research and employment, and also a very special guest from our community. I’d like to introduce Dr. Miriam Rafferty. Miriam Rafferty is a research scientist and physical therapist at the Shirley Ryan AbilityLab and an assistant professor at Northwestern University’s Feinberg School of Medicine in the departments of Physical Medicine and Rehabilitation and Psychiatry and Behavioral Science.
Dr. Rafferty’s research focuses on health services delivery models for people with Parkinson’s disease, particularly examining how proactive delivery models can facilitate long-term community exercise participation.
Bradley McDaniels is a graduate of the University of Kentucky with a PhD in Rehabilitation Counseling Research, Policy and Education. After graduating, he spent 18 months in a postdoctoral rehabilitation research fellowship at Virginia Commonwealth University in the Department of Physical Medicine and Rehabilitation, with a focus on Parkinson’s disease. Brad subsequently joined the Department of Rehabilitation and Health Services at the University of North Texas in the spring of 2020.
His research focus includes psychosocial adaptation, quality of life, and employment for individuals with Parkinson’s disease and other chronic neurologic conditions. And finally, Kelly Weinschreider is a person with Parkinson’s who was diagnosed at the age of 29 in 2002. She is a member of the Parkinson’s Foundation’s People with Parkinson’s Council and a board member of the Greater Illinois Chapter. At this point, I’d like to welcome Miriam Rafferty to our webinar.
Hi, Miriam.
Miriam Rafferty 00:05:18
Hi, Lisa. Hi, everyone.
Thank you so much for having us here. Many thanks to the Parkinson’s Foundation and to our sponsor. Some of you might be wondering why a physical therapist is here talking to you about employment. My interest in employment and employment research for people with Parkinson’s disease stemmed from my clinical work with people who are newly diagnosed with Parkinson’s disease. I would work with them as a physical therapist talking about exercise, and then the questions they would ask would spill over into other topics, including employment. I realized I really didn’t know what to say, so I did a lot of collaboration with our interdisciplinary team at Shirley Ryan AbilityLab and Northwestern University, and it led to some grants to study employment.
Here are my disclosures, and the main thing I’d like to say is that my research on employment is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research, as well as the Parkinson’s Foundation. My co-speaker’s disclosures are here as well.
I have one more polling question that I would like to ask the audience on Zoom, as well as those of you on Facebook. Courtney will push the poll, and if you are on Zoom, could you please respond to the question: if you are a person with Parkinson’s disease, are you employed right now? And if you’re on Facebook, you can feel free to chat these in the discussion. You can also chat discussion questions on Facebook Live, and we will respond to those during the Q&A section at the end.
We’re asking here if people are employed full-time or part-time, if they’re not employed but would like to be employed, or if they’re retired or on disability, or if it’s not applicable. Is it time to close the poll?
About a third of the people on the call are currently people with Parkinson’s disease employed full-time. About half of them are not applicable, and we did see that earlier, that there are a lot of health professionals on this call right now, which is really wonderful that you are here. We hope that we can share lots of resources with you to share. We do have a few people who are employed part-time as well.
Miriam Rafferty 00:07:30
A little bit of background on this is when I started thinking about employment and Parkinson’s disease, I first wanted to see what was out there already. I found in the literature that there are employment challenges for people with Parkinson’s disease that really occur in four different areas: movement, mood, communication, and cognition, or thinking. Related to movement, people with Parkinson’s disease express difficulty moving around the workplace, difficulty writing or typing, trying to hide symptoms or feeling self-conscious about their symptoms, as well as sometimes difficulty getting to and from the workplace.
Related to communication, people with Parkinson’s might have difficulty with voice projection on the telephone or in presentations, as well as if they have less facial expression, their coworkers or their clients might perceive them to be less excited about their work. Mood problems could lead to apathy. Just that overall feeling of fatigue that many people with Parkinson’s experience can be really problematic in the workplace and having the energy to get your job done, as well as feeling more anxiety and depression, which are very common non-motor symptoms of Parkinson’s disease that can actually even occur before diagnosis of Parkinson’s disease. And then cognition and thinking, so all of the multitasking that we do in our jobs on a daily basis, as well as our lives and our families, people with Parkinson’s, if they have difficulty with that, work can become quite draining — the multitasking and organization.
Some of the questions that people would ask me were, how to disclose? To whom should I disclose? Do I disclose to my coworker, my boss, or to HR? How much do I disclose? When to disclose? And they would ask about accommodations.
How do you make a formal accommodation request through HR? If you’re making an accommodation, does that mean that you have to disclose your diagnosis of Parkinson’s disease? And how will people perceive you once they know you have this diagnosis? And then there’s also a lot of informal adaptations that people make in the workplace. These are things that they can do themselves, you know, to set up their workstation differently. A lot of times those don’t need to go through HR, and they are things that people can just do by themselves.
As a physical therapist, and for the healthcare providers, it was really eye-opening to me when I spoke to our vocational rehabilitation counselors and our social workers. It was my impression that if you talk to the doctor, the doctor would just write a note that would tell your employer that you had Parkinson’s disease and that the Americans with Disabilities Act was there to protect you. But I really learned all of the nuances in that, that you don’t always have to disclose the full diagnosis of Parkinson’s disease. You might just have to disclose tremor, and that’s why you need something to help you with your writing.
But there was a lot of nuance, and it depended on the type of job and your job responsibilities, and that really led me to learn about vocational rehabilitation counseling.
Miriam Rafferty 00:10:31
In addition, as a physical therapist, when people talk to me about whether or not they should go on disability or retirement, it’s just outside of the scope of my practice where I really wouldn’t know what to say. So I did learn in my research that, on average, people with Parkinson’s do leave the workforce about five years early. But as you saw from Kelly’s bio, I think that there’s a very wide variability in that, because people with Parkinson’s are getting diagnosed earlier and earlier because we know more about the disease. And so many of you on this call are in your 50s, you’re in your prime working years, and you want to keep working for as long as you can.
I looked into the literature before starting my study, and at the time, there were only 15 articles. Now there are 17 articles on employment challenges in Parkinson’s disease. Compared to the research on exercise, or the research on medications, or the research on deep brain stimulation surgery, this is just not a lot of information to guide our treatment. The studies that are out there focus on describing the workplace challenges, such as the four areas that I described earlier. They describe the percentage of people who leave the workforce early and why they choose to leave.
There was one interesting study that I particularly found interesting that was that physical therapy seemed to be more effective in people who were employed than people who were not employed. There’s obviously a lot of confounding factors that could influence that study. And there was one article that Brad McDaniels, my co-speaker here, wrote where he reviewed the literature and came to the conclusion that vocational rehabilitation, also known as rehabilitation counseling, could be beneficial for people with Parkinson’s disease. I also found tons of information sheets online, and it was really hard to know what was good information.
These are examples of some of the information that was available online about Parkinson’s disease. Those that are highlighted in purple were information from Parkinson’s advocacy organizations like the Parkinson’s Foundation. At the end of this presentation, we do have some resources to share with you, including links to some of this information from the Parkinson’s Foundation. They now have a podcast and some updated materials, and all of the other major Parkinson’s advocacy organizations have materials as well. There’s also Joe Blow and his blog that have information about employment.
Sometimes those stories and anecdotes are really helpful, but it’s really important to understand that everybody’s anecdote and story is their own, and everybody’s living and working in their own path. So you have to kind of take that information with a grain of salt.
Interestingly, there are also two resources for Parkinson’s disease that are really geared toward HR professionals, but they talk about how to accommodate Parkinson’s at work. This information is out there for HR professionals from the Society for Human Resource Management and a really great resource from the Job Accommodation Network, which lists just about any challenge that one could experience with Parkinson’s disease and what would be a good accommodation that could help that type of challenge.
Miriam Rafferty 00:13:38
This information is great to share with HR professionals, but I was worried that if you gave an HR professional a really comprehensive list of everything that could go wrong in Parkinson’s disease, it might actually be a little bit overwhelming for both the individual with Parkinson’s disease as well as the HR professional, because not everybody’s going to have all of those problems, and certainly not right in newly diagnosed Parkinson’s disease.
There are some pluses and minuses there that really led me to think, as well, that we need vocational rehabilitation, or social work, or occupational therapists who really have a lot of expertise in employment, who can help walk people through their employment challenges and the right way to address accommodations that aren’t overwhelming.
That was my opinion on what we needed, but I went to a focus group of stakeholders that included people with Parkinson’s disease as well as the interdisciplinary care team. They came up with three key needs that we needed for people with Parkinson’s disease who were newly diagnosed and wanted to address their employment. The first key need was that people with Parkinson’s disease and clinicians need information. This wasn’t just an issue of lack of knowledge in people with Parkinson’s disease, but our entire interdisciplinary team. Even at the Shirley Ryan AbilityLab, an interdisciplinary rehabilitation hospital where we have vocational rehabilitation experts, we still didn’t know as a team the right way to answer these questions.
In addition, what I found very interesting was that people with Parkinson’s disease need somebody to start the discussion about employment challenges. They felt like this should be coming from their neurologist, but the neurologists are so busy and have so many things that they’re supposed to be discussing with patients. Our stakeholders really felt like this was a topic that might get overlooked sometimes. So we need to identify who is the right person on the care team to start this conversation.
And finally, we decided that the employment-related intervention needs to be individualized, and it should be proactive. What our care team talked through was that a lot of times, we learned about somebody’s employment problem or challenge after there was already an employment crisis. For example, if their HR or management noted to them that there was a problem. Really, these are things that could be addressed proactively if only we had all of the information early.
Miriam Rafferty 00:16:03
One of the things that has come from this study, this bigger study that we’re doing of finding people’s needs and trying to track people now for three years — every six months we’re talking to people to find out more about how their employment is changing, people who are newly diagnosed — was that we needed a way for people to access vocational rehabilitation. And you’ll learn more from Brad about vocational rehabilitation, and there’s another slide here at the end, but we were funded by the Parkinson’s Foundation Community Grants in 2020 to fund a virtual vocational rehabilitation program for people with Parkinson’s disease. We’re accepting clients now through March 2021.
So if you are a person with Parkinson’s disease who would like individually tailored advice through a telehealth application, please feel free to reach out to our contact, Sydney Achler, at sachler@sralab.org, and we can get you scheduled for a telehealth appointment, courtesy of the Parkinson’s Foundation.
I’d now like to invite Kelly Weinschreider to share a little bit more about her experiences with Parkinson’s disease.
Kelly Weinschreider 00:17:13
Hi, my name is Kelly Weinschreider. As mentioned earlier, I was diagnosed in 2002 at the age of 29. My dad also has Parkinson’s. He was diagnosed in his 70s. I live in Chicago with my husband, Dave, and our golden retriever, Archer, and I had DBS in 2016.
I worked for the first 10 years after my diagnosis. I told very few people at work. As my symptoms progressed, it became harder to hide. The majority of my symptoms at the time were mostly non-motor. My medications were actually controlling the physical side quite well. However, my handwriting became increasingly illegible, so I would take notes in a meeting and not be able to read them.
My cognitive skills, multitasking, attention span, and focus were declining, and stress made everything worse. Anxiety made everything a crisis in my mind, and lack of sleep made my judgment poor. After discussions with my family and doctors, we decided that I was not performing as well as I should be and stress was detrimental to my overall health. So I left my job.
But there wasn’t, you know, this was 20 years ago. There weren’t the resources that are available today. So that’s why I’m so honored to be a part of this.
The other thing that I wanted to mention was the Spoon Theory summary. If anyone’s ever heard of that, it’s a really great way to talk about fatigue particularly, but if you live with a chronic illness, it’s a great way to explain to other people how it is to live with a chronic illness. One of my earliest symptoms was fatigue, and it wasn’t your run-of-the-mill, I’m young, I live in Chicago, I go out type of fatigue. It was all-consuming.
Most of my friends started their days with what seemed to be unlimited energy to do whatever they needed to do, and for the most part, they did not have to worry about running out of steam by the end of the day or even the early afternoon.
As you know, if you’ve lived with a chronic disease like Parkinson’s or you treat Parkinson’s, it involves much more than adding a medication or a therapy into your daily routine. It’s an added mental weight, and sometimes even a physical one, that causes easy tasks to become difficult. Exhaustion comes on quicker than before because the energy used to perform these tasks takes a toll. This struggle affects all of our lives, and it does so in a way that’s hard to explain to people who don’t have to think about how much energy they spend on a simple task. There was a story created by Christine Miserandino, a writer with lupus, and Christine was at a diner with a friend who couldn’t understand why she had so much trouble accomplishing seemingly small tasks.
Kelly Weinschreider 00:19:35
Christine used the closest object at hand to illustrate her metaphor: the spoons on nearby tables of the diner. Christine handed her friend 12 spoons. She then asked the friend to describe the typical activities of the day. She took away one spoon for every single task: showering, getting dressed, standing on a train. Skipping lunch would cost a spoon too. When the spoons were all gone, it meant that there would not be enough energy to do anything else. She explained that someone who has a chronic illness starts each day with a limited amount of energy, or a limited amount of spoons. When you perform an action, you spend a spoon. When you spend all of your spoons, you’re mentally or physically exhausted and have trouble performing even small tasks.
The Spoon Theory can help the people in your life who don’t have chronic health conditions understand the decisions and trade-offs that you make each day. It’s also a good reminder that you’re empowered to make those decisions and spend your spoons in any way you see fit and the way that makes you feel best. And now Brad will take it from here.
Bradley McDaniels 00:20:31
Thanks, Kelly. I think we’ve got a poll question. You guys want to throw that poll up?
Kelly Weinschreider 00:20:36
Ah, yes. I’m sorry, we do have a poll. My apologies.
What are your main employment challenges? Pick your two biggest concerns. As I think I mentioned, mine was handwriting, multitasking, staying organized, not working fast enough. I didn’t, at the time, have trouble with transportation, but I did have a lot more of the cognitive, non-motor issues.
And I think these are really important to discuss. I don’t think I did enough at the time to really understand, or had anybody to really work through it like people on this call do now today.
Do we have the — okay, we have the results of the poll.
It looks like multitasking and staying organized. I can definitely, definitely feel that. The handwriting and computer use, most definitely, and working fast enough. Yeah, those are great responses, and I think we’ll address those.
Bradley McDaniels 00:21:34
Yeah. Thanks, Kelly.
Bradley McDaniels 00:21:36
And thank you for having me today. I’m excited to be here and have the opportunity to talk about some of this stuff. Miriam and I had gotten to know each other sometime back and both had this common interest. Where we’re at today, looking at that last slide, there are clearly some issues that folks with Parkinson’s disease encounter on a daily basis that can affect the way that they work.
We’re going to dig in a little bit and talk about a basic, cursory understanding of voc rehab and what that is. It’s funny, most people that I meet today, and I mention what I do and vocational rehab, many don’t have any idea what it is. It really started back in 1918, the Soldiers Rehabilitation Act. Soldiers coming home from World War I who were injured needed to be rehabilitated so that they could take care of their families, and so that’s kind of how it all started. Fast-forward to the Rehabilitation Act of 1973, and that was really when the federal government stepped in and said, “All right, we’re actually going to formally recognize this program as vocational rehabilitation.” It’s a state-run program that’s federally funded. And what it does is it’s pretty comprehensive.
It focuses certainly on helping people get to work, but it also provides them with the services that they might need that could preclude them from doing that. i.e., someone who has depression, and we need to get that dealt with prior to getting them back into the workplace. So we can help set up meetings to see a counselor or a psychiatrist as needed. It’s a variety of offerings that the Voc Rehab people do.
The next question becomes who’s eligible? Can everyone get this? And the short answer is if you have a disability, you are eligible. That’s kind of the simple answer.
And what does that mean? It means that if you have a mental or physical impairment that substantially limits one major life activity, and you have a record of having this, meaning you’ve seen a doctor, you’ve had a diagnosis, there’s evidence that you have it, then you’re eligible. What you do is you would get in touch with somebody at one of these offices. And quickly, I’ll mention Miriam’s, what they’re doing at the Shirley Ryan AbilityLab. That’s a wonderful opportunity to receive these services. It’s simple. They know exactly what’s going on, so I strongly encourage anyone who’s interested to reach out to them.
Other services that are available: assistive technology. You’re having trouble with tremor and typing. Maybe you need voice-to-text software. Voc Rehab can help get those things for you. Any type of training that you might need to improve your job position or going back to work, you have an interest in a specific area, that type of training can also be provided.
Really anything that you need, anything that gets in the way of you doing your job, Voc Rehab can offer services to help with that. The other question I frequently get is not only what is Voc Rehab, but how do I find them? Right? And so there’s a link that we’ve got here, AskEarn, and you can see the whole link there, is a way that you can go in and find out in your state how to find a local vocational rehabilitation counselor or the Office of Vocational Rehabilitation. Or, as I mentioned, reach out to Miriam and her research team.
Bradley McDaniels 00:25:25
I’m sure they would be more than happy to help you through this process. The other question that comes up in presentations like this from an international level is, we talk about some of these things with the ADA and laws and how they affect — sorry, my movement light just went out — and how it works around the world. We do have the ADA, which we’re going to talk about on the next slide. No, too fast. Here we go.
I wanted to let you know that the International Convention on the Rights of Persons with Disabilities was passed by the United Nations in 2008. And it basically is a law very similar, or a group of laws very similar, to the Americans with Disabilities Act. So these types of services are available anywhere in the world. The UK and Australia have ADAs very similar to what we have here.
Quickly, the ADA is kind of the seminal legislation that protects anyone who has a disability from discrimination. I’m going to quickly go through what that looks like. Title I of the ADA, and this was passed in 1990, it’s been amended since, but Title I prohibits discrimination of qualified individuals with a disability. Seems pretty simple.
What does qualified mean? We really have to make sure we understand these terms in the definition. Qualified means that the individual meets the skills, the education, the experience, that either with or without an accommodation can perform the essential job functions. I think that makes it pretty clear that you have to have some abilities and you have to be capable of performing on the job.
The second bullet point for employment is discrimination includes not making reasonable accommodations or denying jobs or benefits based on one’s disability. The other question becomes, if you need accommodations at work, your employer is required by the ADA to make reasonable accommodations. What’s that mean? And what really that looks at is making employment-related modifications that will help you interview for a job, keep your job, and make sure that you receive the same benefits everyone else at your job has.
There are a whole bunch of those, and I think later in this presentation we’re going to talk about some of those, what does that look like? Clearly, the ADA prevents excluding one with a disability from the workforce, from getting a job. As a caveat, it doesn’t mean it doesn’t happen every day. There are ways around it, but just know that there are protections that are in place that are designed to help with this process.
That’s Title I of the ADA. Title V is miscellaneous, and it prevents coercion or threatening acts against people with disabilities. That’s one of the fears that people have with talking to their employers about a disability, is if I say I need these accommodations to be able to perform my essential job duties, are they going to be angry with me? Are they going to get irritated? Are they going to make my daily work more difficult?
Bradley McDaniels 00:29:09
Again, this is designed to enable one who has a disability to be able to go to their employer and discuss these things and know that there’s not going to be any retaliation against them for making the requests that they’ve made. One thing I just realized I skipped in the previous bullet point two under employment was these reasonable accommodations. The one caveat to that is companies don’t have to do that if it will create undue hardship on them.
That’s another one of those terms, those phrases, that is challenging because what does that mean? Undue hardship to one might not be undue hardship to another. And really what that looks at is when an accommodation would result in significant difficulty or expense for the employer. An example would be you have an individual who works for a company. They work on the second floor, and their disability is making walking upstairs challenging. Undue hardship would be if the business were tasked to put in an elevator for that one individual, right? It makes more sense that you would maybe move them to a ground-floor office rather than have them walk stairs. But that’s a simple example of what undue hardship would look like.
These questions come up on a very regular basis. Do I have to disclose? The simple answer is no, you don’t. You are under no legal obligation whatsoever to share anything about your personal health with anybody at your employment. And that’s key because there’s a lot of discussion about, there are blogs out there that talk about it, that you need to disclose during the interview process. That’s not true.
Just remember, this is a personal decision that you disclose to your employer when you need to disclose to your employer. That means that if you find that in your daily work you’re having trouble because of your tremor typing and you’re not able to get your work done in an efficient and quality manner, you probably would want to disclose that to your employer because questions are going to come up, right? They’re going to wonder why your work is taking a dip, you’re not productive, the quality of your work is not doing what it used to do. You would want to disclose then because you can’t get these accommodations until you have disclosed that you have this disability.
So, it’s a, I won’t say it’s a game, but it takes some skill in deciding when’s the right time.
And so not only the question of do I have to disclose, but how do I disclose? One of the things that comes up is, do I just go to my employer and say, well, I have Parkinson’s disease and I need some accommodations? Understanding that most people who are on this call today know what that means. They have a pretty good understanding of what the challenges are associated with Parkinson’s disease. And we saw that on the last poll that we took, right? There are a variety of things that come into play that can affect one’s ability to work effectively. But many employers are going to have no idea what that means. So the rule of thumb is to typically talk to your employer in layman’s terms. Don’t say I have bradykinesia, right? Because they’re not going to have any idea what that means, most likely. But share with them what the limitation is that’s impacting your work.
Bradley McDaniels 00:33:17
Do you have to tell them you have Parkinson’s disease? Not necessarily. What they need to know is what’s impacting the functional status that you’re having. I reworded that terribly. What’s impacting your work? That sounds better.
And then the last point on this page is, what about accommodations? That’s an area that an individual doesn’t want to just assume that an employer will understand what accommodations are needed. For instance, my tremor is impacting the way that I type. I believe I need voice-to-text software. Well, an employer may or may not understand, be able to make that connection, that logical leap, right? And what comes next? So we need to spell it out for them. We need to say, as a result of the tremor that I experience on a daily basis, it is affecting my work, and for me to be able to do my essential job functions, it would be helpful if I had voice-to-text software. Period.
It makes it very easy for the employer. They don’t have to do any guesswork. They don’t have to go back and say, how am I going to figure this out? They don’t have to go to HR and have this whole drawn-out process. Give them exactly what they need and help them be able to make a decision that’s going to benefit you and them in the long run, right? Because it’s a win-win when we get to the point that we’re doing this.
A couple of other areas that are important to address: to whom should I disclose my PD? Usually your immediate supervisor is best. That’s the person you work with most closely and most regularly. HR will typically become involved whenever we get to the point where reasonable accommodations are being discussed, because sometimes there’s an expense involved in that. Sometimes there isn’t. Sometimes it’s moving an office like the example I gave about the elevator. Not a whole lot of expense in moving an office for an individual, but there are other times that something’s got to be bought, like voice-to-text software, for instance. And so HR’s got to be involved in that process.
Just some final general comments about the disclosure process. Again, I mentioned this the slide before, but it’s worth repeating: focus on your symptoms. Focus on what is going on that’s impacting your ability to do your work. Avoid discussing the ADA. Certainly, you don’t want to go into an employer and say, I realize I have rights based on the ADA, and this is what you need to do. That’s probably not going to end well. Yes, you do have rights, but it’s all about tact and the way that that’s presented.
Be prepared with the necessary facts. Know what your rights are, and know what you need from an accommodation standpoint to be able to get your job done. Keep your focus on your desire to be productive. That’s your goal, is to continue to be a productive, valued employee. And for you to be able to do that, there are some things that would be helpful. And lastly, I mentioned this before also, non-medical terms. They don’t know bradykinesia. They might, they probably know tremor. But keep it simple. Tell them exactly what’s going on and how that’s impacting your ability to do your work.
I’m going to invite Kelly and Miriam back. Thank you. And we’re going to go through some other slides here and just have a little chat about some questions that commonly come up. Miriam?
Miriam Rafferty 00:37:06
Yeah, great. Thanks, Brad. That was really, really great information that you shared. We wanted you to join us at our water cooler at our workplace here, having a little chat about questions that came up during the day. One question that we’ve heard a lot, or that I hear a lot as a physical therapist, is, I haven’t told anybody at work yet, but I’m afraid that they might start to notice my tremor. I put my hands in my pocket a lot. My handwriting and notes are just horrible. You can’t read it. My typing is slow. I have a lot of kind of double letters that are pressed. And what is my response as a traditional interdisciplinary care team member? What is Brad’s response as a vocational rehabilitation counselor? And then Kelly also to give her experience with this type of problem from her experience.
The traditional interdisciplinary team response is if you’re having a hand problem frequently, an occupational therapist can help. They can give you tips and tricks to work on your handwriting or your typing. There are specialist occupational therapists who know about assistive technology. And also to talk to your doctor. Many people with newly diagnosed Parkinson’s disease really are trying not to take medications, but the best evidence right now from the neurologists that we work with is to start taking medications when your quality of life is impacted, and your work is a very big part of your quality of life. I would say this is something to talk with your doctor about and an occupational therapist about. But Brad, I’m curious kind of what you might say that’s different here.
Bradley McDaniels 00:38:44
You know, that’s one of those things that becomes a real personal issue. The accommodations that make a lot of sense to me in this scenario are one of the ones we’ve already talked about, the voice-to-text software. Right? Clearly, tremor plays a role in how well somebody can type and be able to get their work done on time and have it done in a quality manner. So I think it’s a matter of how do I match these symptoms that I’m having with the solution that would make them better? And I think that’s really where a vocational rehab counselor or the Office of Voc Rehab can help guide that process. They can say, how are these symptoms interfering with your ability to work? They figure that out, and then they decide on, is it voice-to-text? Is it alternative keyboards and mice that are a better fit for your hands? I think it’s just a matter of thinking it through and determining what solution would be effective.
Kelly Weinschreider 00:39:51
Yeah, and I think also one thing I would add is you can use the recording function on your phone to also record meetings, because that’s where I really ran into trouble, was I could take notes, but by the end of the meeting, it was just a scribble. I mean, it was just almost a flat line. And so, with some memory issues, I didn’t recall what had gone on in the meeting, nor could I read my notes. So recording the meeting might be a way to also help solve that issue.
Bradley McDaniels 00:40:18
It’s great.
Miriam Rafferty 00:40:19
Yeah, and one thought as we move on to the next slide would be that both Microsoft and Apple, as well as Android phones, all of the phones and computer software now have a lot of built-in accessibility features that you can play around with.
Kelly Weinschreider 00:40:33
Okay.
Miriam Rafferty 00:40:34
Next question is, if I disclose, I think I will lose my job. To whom should I disclose? Do I have to disclose at all? And Brad already talked about this a little bit, but in this particular example, the job responsibilities include driving and safety. Perhaps this individual could be a first responder. I’ve talked with individuals who are truck drivers before, so there’s a lot of nuance there with that. I’m going to let Brad start with this one.
Bradley McDaniels 00:41:03
Yeah. You know, the first thing, Miriam, as I read this question that strikes me is, do I need a lawyer? That’s one of the questions that frequently comes up, and I get it, because when you’re dealing with the ADA and an employer, you’re concerned about your rights. But as this may come up later, you don’t need a lawyer upfront when you’re dealing with your employer about an accommodation that you need.
Again, looking at the job responsibilities that you have, what is something that might be able to help you do this job? Is it some type of an adaptive steering wheel that can make it easier for you to use your hands and move around? Is it some type of voice guidance in your car that would be helpful? And the question about when are people going to notice, again, that comes back to it, that’s really a personal thing. How comfortable you are.
Eventually people probably will notice and questions will arise. And I think that the biggest key to remember is I never have to disclose. If you feel like it would make you feel better at work and feel more comfortable with your colleagues, by all means, feel free. But just always remember that you don’t have to disclose unless you want to disclose. Miriam?
Miriam Rafferty 00:42:30
Yeah, I agree that these are the questions that get really hard from an interdisciplinary team perspective, where I have a hard time responding. There are occupational therapy programs that are driver’s rehabilitation programs where you can go and get a driver’s test, both simulation or on-the-road test, to kind of prove to yourself or your healthcare provider or your employer that you’re still a safe driver. But this is one of those things where you want to avoid an employment crisis. So being proactive with seeking the right care from a traditional interdisciplinary care team or a vocational rehab counselor is going to be really important.
Bradley McDaniels 00:43:06
All right. I think we’ve got one more.
Miriam Rafferty 00:43:10
Third question here is somebody who says, I love my job, but I have been really struggling to stay on top of things. This is a person who’s having difficulty with multitasking and organization, note-taking, completing tasks in a timely manner, and staying focused. This is making them feel really stressed at work because their supervisor has now expressed concern. This is one where, from the interdisciplinary care team, unfortunately what I hear frequently from patients who say, well, my doctor said, or social worker said — so I don’t know exactly what was said — but the knee-jerk reaction might be, great, retire, stop working, take the stress away.
But when you love your job and you’re in the prime of your career and your prime earnings, I think this requires the nuance of a vocational rehab counselor. So I’ll pass it off to Brad and Kelly.
Bradley McDaniels 00:43:58
Yeah, yeah, you’re right, Miriam. And you know, this goes back to, as I read through this list, one of the things that you all mentioned that’s a great suggestion are the variety of apps that are available on phones these days, right? Electronic organizers that we can use with our phones. And I’m looking at this outside of the technology. Flexible work schedules are something that a voc rehab counselor can help you talk to your employer about.
Job crafting, right? Where we might change a certain portion of what you do, take that away, but add something else that fits more with the skills that you’re having so that you’re able to complete that work. And thinking about staying focused, sometimes you just need a break during the day. Can you work with your employer about having scheduled breaks throughout the day that you need to just kind of sit back and let yourself rest and recover and be ready to move forward for later in your day? Kelly, I’m curious about your thoughts on this.
Kelly Weinschreider 00:44:59
Yeah, I mean, I think I actually wrote the question to that because it was mentioned earlier. This was me. I really struggled. And I think that had I had somebody like you, Brad or Miriam, to help guide me, it would have made a tremendous difference because I really felt alone going through this. And you really love your job, and it keeps you focused and social. And you do miss that when you don’t work.
So I think it’s very, very important to know that the resources are there. And unfortunately, I didn’t have that at the time, but this is definitely something that can be worked through with the right resources, or at least to the best of their ability.
Bradley McDaniels 00:45:36
Yeah, for sure.
Miriam Rafferty 00:45:40
And just to wrap up some key take-home points. First, people with Parkinson’s disease may have individual challenges with their work based on their symptoms and their job. These challenges can include changes in movement, mood, and communication, as well as cognition and thinking. We believe that an interdisciplinary team can really help you with this by providing individually tailored advice as opposed to just kind of off-the-shelf knowledge that would be applicable to everybody. And I think that vocational rehab counselors have expertise in navigating disclosure and accommodation that is very unique in our healthcare system.
Unfortunately, vocational rehab counselors who are knowledgeable in Parkinson’s disease are not everywhere. But we’re hoping that we can kind of make a shift and that we can get this information out there to vocational rehabilitation counselors. Social workers also have a wealth of knowledge related to employment disability and all of the paperwork that goes along with making these decisions, and occupational therapists can help as well.
I’d like to, I think Lisa is going to help us now because we’d love to answer some of your questions.
Lisa Hoffman 00:46:53
Hi, everybody. Well, thank you so much for such an interesting and deep dive to the world of employment and young-onset Parkinson’s. Certainly, I love the three-prong approach of how you spoke today. Miriam, from your research perspective and the inclusion and listening to concerns of people who are diagnosed at a young age with Parkinson’s and through their trajectory of their long career, and hopefully to stay in the workforce.
And also, Brad, I have to say, even before meeting you, I’d never heard of a vocational rehabilitation specialist, and I would think not many on our webinar here today as well. So I’m so thankful that you could share your expertise with us. And as Miriam just alluded to, finding a vocational rehabilitation specialist who also has knowledge on Parkinson’s, I think we found someone. So I’m really glad that you’re able to share your information with us.
And Kelly, it’s always really quite helpful to have your voice at the table. And I’m certainly sure people who are viewing this webinar today really admire your wherewithal and also sharing your spoon theory and how that could apply to them. But I also like the take-home comment that you all spoke about, is that it’s time to be proactive and not wait for a crisis. And I think there’s a theme that in hindsight is 20/20, and I’m really very excited that we have this kind of information as a resource for a Parkinson’s community, that they can avoid a crisis and be proactive.
We’ve had a lot of questions come in as you were speaking, of course, and I want to highlight a few that you didn’t necessarily touch on during the webinar that I think are poignant to some of the people who are listening. One is from a care partner’s perspective. The question is, they’re curious about whether you have any suggestions how a care partner for somebody with young-onset PD can successfully navigate conversations with their employer about the impact of caring for somebody who has Parkinson’s, and that they may need to take off from their work to bring their loved one to a medical appointment, a physical therapy appointment, or just be with them more often. Do you have any suggestions from the care partner’s perspective?
Bradley McDaniels 00:49:22
Yeah, that’s a great question. And clearly, particularly in the young-onset population, that’s going to happen much more frequently, right? So just a little bit of background on that. Understand that there’s what’s called family responsibility discrimination. Employers cannot dissuade you from being involved in your care partner, but there are laws protecting you just like the ADA. In fact, the ADA has a clause in it called associational discrimination that helps if you have a child or a family member or a spouse who has a chronic medical condition. You are given the freedom to be able to help with that.
And more specifically, the Family and Medical Leave Act allows for 12 weeks of time off in a one-year period to be able to care for someone in your family. Now, just as a caveat, there are a couple of specific things that must be met in order to have that. You have to have a qualified employer, and what that means is they have to employ at least 50 people in order to be held to the Family and Medical Leave Act. Secondly, you have to have worked there for more than one year. And thirdly, during that one year, you’ve had to have 1,250 hours of time worked. If you meet all three of those, you qualify for the protections under both the ADA and the Family and Medical Leave Act.
Lisa Hoffman 00:50:58
Thank you, Brad. It’s very good to know. Miriam or Kelly, do you have any other comments from a care partner’s perspective?
Miriam Rafferty 00:51:08
None for me.
Lisa Hoffman 00:51:09
Okay. Another question’s come in. I saw in our poll we have a lot of health professionals viewing today. And the health professional, particularly a social worker, pointed out or is asking a question: do you know of any training programs specific to workplace support for people with Parkinson’s for movement disorder specialists, or even just neurological or other neurological conditions?
Bradley McDaniels 00:51:34
I see Miriam shaking her head too. I feel the same. Right. I said that hence the reason that this is so important, right? It’s sorely needed and lacking terribly. Miriam, I don’t know what your thoughts might be.
Miriam Rafferty 00:51:50
No, I mean, I think this is our first step here today and hopefully, you know, Brad and I and the Parkinson’s Foundation can keep working together to make sure we get more information out there.
Lisa Hoffman 00:52:01
And Miriam, you alluded to the power of a social worker on your team. Maybe not everybody may have a vocational rehabilitation specialist handy or on the top three of their list, but hopefully as a social worker, they do have those capabilities and knowledge and connections to help with next steps going forward.
Miriam Rafferty 00:52:20
I think that the social worker and the occupational therapist, I think each team is going to need to identify one person. This is my opinion, that one person on each team is going to need to become an expert or should become an expert for people with newly diagnosed Parkinson’s disease. And it shouldn’t be me, the PT. I’ve definitely learned I am not the expert in this area.
Vocational rehab counseling, unfortunately, there are only nine hospital-based vocational rehab counseling programs in the United States. I think it’s Northwestern in Chicago and at NYU in New York, that’s where you have vocational rehab counseling programs coexisting with Parkinson’s Foundation Centers of Excellence. We have people like Brad down in the Dallas area. There are people up at University of Washington in Seattle that are very good, but it’s really few and far between.
So we do need more expertise to be developed in teams, but social workers are key. They already know, you know, 90% of this information, and some know more than others, certainly depending on their experience. And occupational therapists also, I think there are some occupational therapists who know a ton, and then there are other occupational therapists, unfortunately, who don’t know a ton. They’re more used to working with people who are having more advanced problems with Parkinson’s disease rather than the newly diagnosed Parkinson’s. But if you can find the right one in your team, that would be a great resource.
Bradley McDaniels 00:53:38
And if I may, real quickly, so to Miriam’s point, one of the problems with traditional vocational rehabilitation counselors is when you think of Parkinson’s disease, when most of these folks are trained, they learn about Parkinson’s disease as a disease of aging, right? So the assumption becomes everyone with Parkinson’s disease is 75 years old and they’re not going to work anyways. Part of this process is changing the narrative of what that looks like and saying there’s a broad array of people diagnosed with Parkinson’s disease every day.
Some, yes, are the traditional onset, but we’ve got this subset of people who are diagnosed early, and it’s analogous to multiple sclerosis, right? You’ve got a very young-onset group who is in the prime of their employment, and they need help. So we’re evolving daily as we go, and still have a lot of work to do.
Lisa Hoffman 00:54:40
And based on the heterogeneity of Parkinson’s in itself, and diagnosed at a young age, it is a progressive disease. Any suggestions, a question came in about sharing when you’re sharing your diagnosis for various reasons. Again, it’s not the have-tos, no, but there are the need-tos at the time of sharing that this is progressive, that this is not a stagnant, you know, my symptoms aren’t stagnant, and it will change over time. There’s motor and non-motor and the various other ways. How do you broach that subject with an employer?
Bradley McDaniels 00:55:23
Yeah, the simple answer, Lisa, is what you just did, right? It’s a matter of having that discussion and saying, these are my symptoms. I also want you to understand a little bit about what this is going to look like over the next three, five, 10 years. It’s probably going to progress and get worse. Everybody’s different, and that’s the challenge. But we do know that, like you said, Lisa, it is progressive and it’s going to change. I just can’t tell you when.
And I think the more open that an individual with young-onset PD is with their employer, the better. The more, once you’re ready to disclose, be ready to disclose. Share with them what this looks like and that you want to continue working, and these are the things to expect moving forward. I think that’s always the best way to go.
Lisa Hoffman 00:56:18
And just real quick, chances are the people, when you’re ready to disclose, you’ve been living with the disease a long time. Sure. You’ve tackled some of the social hurdles, but approaching the workplace is difficult.
Bradley McDaniels 00:56:30
Absolutely.
Lisa Hoffman 00:56:31
And when we’re speaking about employment issues here, there is an assumption as we’re speaking that it’s your employer. We know many people are freelance. They’re hired as consultants, independent contractors. Any suggestions or ideas around that realm?
Bradley McDaniels 00:56:47
You know, I don’t. I think the challenge becomes what is it that you need? The laws become a little different if you’re not actually working for someone. But you can still go to vocational rehabilitation and receive help if you’re an individual with a disability and you have evidence of that and you meet the criteria, right? You can still get the help from vocational rehab just like you could if you worked for a large corporation. So it’s all available.
Lisa Hoffman 00:57:20
And finding someone like you, Brad, what’s your suggestion for people who are, you know, part of perhaps our Centers of Excellence network but in rural communities? Now they know of you, know about your discipline and industry, but what would you suggest would be the first step of finding someone like you?
Bradley McDaniels 00:57:37
Yeah, I think the first step is probably the website that we had earlier on, AskEARN. That’s a great website to be able to go to. Unfortunately, we don’t have a terrific catch-all that says, this is everything you need to know about vocational rehabilitation. That’s probably the first step.
The other step is to talk to your professionals that you’re working with. Unfortunately, many professionals don’t have those answers either. And that’s part of our charge, is to get them to say, hey, I’ve got this patient with young-onset PD. They’re working. I need to make sure that they know what’s available. And so it’s asking the questions and going to the, you know, the internet’s a slew of great information, sometimes too much. But that AskEARN, I think, is a great way to start. Thank you.
Lisa Hoffman 00:58:32
No, thank you so much for this really valid, critical information. And we’re just so excited, and we have our indebted gratitude for the three of you from the Parkinson’s Foundation to speak on this subject in workplace and the nuances of the young-onset population. So we greatly appreciate that.
You’ve done your job. You’re fantastic. And I’m going to ask for our last slides. We’re coming up on the top of the hour right now, and I thank you, Miriam and Brad and Kelly, for joining us. I’ll just kind of close it up here as we say goodbye. And as I’m kind of switching my slides here, as Miriam just spoke about, I just wanted to bring it up once again, the vocational rehabilitation program she was speaking about, it is a Parkinson’s Foundation community grant recipient. There is information on there if you are interested in being part of this discussion and part of this research.
Also, just to reiterate a lot of the resources that Brad and Miriam shared, again at AskJan.org, and all our other information is here. And we are where we are today with the generous support of our sponsor, Neurocrine Biosciences. We thank you very much for your support here. And for those, I know we have health professionals on this call today, so don’t forget, if you want to get your CEUs, click on that link in the chat, or you can go onto our on-demand webpage. And you only have 30 days to fill out the form to receive your one free CEU. Be patient. It does take time for you to receive the CEU, between 60 and 90 days.
And as always, this expert briefing and our webinars are recorded for on-demand viewing, and it will probably be ready in less than a week, in a couple days. So take a look on our website for that. And as you know, you can download our slides. They’re in the chat and also on our website, so you can take a deeper dive in all the wonderful information that was just shared.
Lisa Hoffman 01:00:35
And the last expert briefing in our series of young-onset PD, we’re going to switch gears a little bit and we’re going toward — we’re jumping over to partnering, with dating, relationships and romance. You don’t want to miss this one coming up next month with Dr. Sheila Silver, clinical sexologist, and members of our Parkinson’s community will share their story with you as well.
And for those health professionals on our webinar and anyone else who’s joining, we have this wonderful partnership with AIRPO, and we are doing our final webinar of this year with them coming up in a few weeks about fall prevention and living safely at home with Parkinson’s. Another physical therapist will be leading that charge as well. And as you know, we have quite a plethora of resources for you. If newly diagnosed, we have wonderful podcasts which have pertinent information, especially about employment, our fact sheets.
And we also invite you to be part of our PD GENEration, our new genetic study initiative, which is the first of its kind in the nation to offer free testing and counseling for people with Parkinson’s. And as we know, 10 to 15% of people with Parkinson’s may have a genetic predisposition for the disease, and this may be of great interest, especially if you’re diagnosed young.
I want to thank you again for joining us today. And hang on, don’t go anywhere because when this webinar ends, a pop-up screen’s going to happen and a survey will pop up. We ask you to kindly fill out the survey because it’s from your thoughts and ideas for how we plan our next series and our next seasons for Expert Briefings, and we want to cover the topics that are of interest to you. So thank you for your time today. We look forward to seeing you at our next Expert Briefing. Bye-bye.
