Employers must better accommodate 'invisible' disabilities, say experts
By Sarah Dobson
The number of people suffering from Parkinson’s disease may double in the next 35 years, according to a recent report, with obvious implications for the workplace.
An aging population, declining smoking rates and increasing industrialization are factors that could see the number of those affected rise to 12 million worldwide by 2040 — from six million today, said the supplement in the Journal of Parkinson’s Disease.
The prevalence of the neurodegenerative disease is certainly growing, said Neli Gontier, education and training specialist at Parkinson Canada.
“We anticipate — and it may be a factor of an aging society — that the numbers are definitely going to increase. There are more seniors today than there ever have been in history of humankind; people are living longer.”
That of course will impact many people in the workplace, particularly as workers continue to push out the age of retirement.
“Parkinson’s is increasing at the same rate as Alzheimer’s,” said Gontier. “And for Parkinson’s disease, it’s not just about the numbers of people… it’s the impact, the severity and the length of time with which people live with this chronic disease that has such tremendous socioeconomic impact on their lives and the lives of their caregivers and their families.”
Affecting workers
Parkinson’s is characterized by slowness of movement, rigidity, tremor and postural instability, according to Parkinson Canada. Non-motor symptoms can include a change in taste and smell; choking and swallowing difficulties; nausea and vomiting; constipation and bladder dysfunction; dementia and cognitive impairment; excessive daytime sleepiness; and double vision.
Depression is another common non-motor symptoms of Parkinson’s disease, said Gontier.
“There are so many systems affected, and these are the causes behind what we call invisible disabilities. And that’s where the workplace comes in, because these are disabilities that are unseen, not easily perceived or immediately perceived and, therefore, it’s hard to know they’re there, hard to understand the need for accommodation or how to accommodate that need.”
A lot of people with Parkinson’s say they are fatigued more easily, so that can impact their work, said Rehnuma Kamal, service development officer at Parkinson Québec in Montreal. People may also have trouble concentrating or have slower movements.
The prognosis can vary by individual, she said.
“For instance, someone who got the diagnosis at 60 may have Parkinson’s disease for 15, 20 years without any day-to-day problems because the medication will be able to control the symptoms well; but in another case, someone of the same age may see the disease progress more rapidly, so it really depends.”
Parkinson’s is chronic so people can live decades with the illness, said Gontier.
“However, Parkinson’s is complex. There are many symptoms and they worsen over time. We’ve had advances in the treatment of Parkinson’s — although we rely firsthand on medications, there’s deep brain stimulation, there are pumps that give a constant dose of Levodopa directly into the intestine.”
Invisible disabilities
There are several ways a workplace can be adjusted to accommodate a person with Parkinson’s, such as changing the ergonomics of a desk for rigidity issues, or letting a worker sit instead of stand if there is postural instability. For vision challenges, a large screen can help, said Gontier.
“If they are suffering with fatigue or a low voice, which is very common with Parkinson’s, the voice does deteriorate over time, people are… unable to speak loudly… so (employers can) provide a microphone,” she said.
“It can be in the form of something as simple as a modification, so… if the person has difficult walking or slowness, you may want to — depending on their task or job responsibilities — have them work in an area where they don’t have to walk long distances.”’
Flex hours can also support people with Parkinson’s, as the medications wear off during the night, said Gontier, so they can be rather stiff in the morning before they take their first dose.
Similarly, reduced work schedules or remote work can help, along with providing more breaks, said Kamal.
“Stress, anxiety, fatigue have a tendency to exaggerate certain symptoms of the disease.”
However, much of the change can only happen if the person is willing to accept his situation, she said.
“Often, what I witness are people who (have) not accepted the diagnosis yet or are not sure or think that their symptoms are not interfering with their daily life, so that’s the first step — accepting the diagnosis is there in order to make necessary changes.”
Plus, many people are afraid of how their employer or others will react, said Kamal.
“A lot of people are scared that their colleagues, their friends, or whoever will judge them or they’ll have pity for them.”
There’s also a need for proper training and thorough training on invisible disabilities, said Gontier.
“Most employers are doing the basic accessibility training but they’re not going really above and beyond that, and they need to go into more depth about invisible disabilities, things you can’t see, and they need to manage perceptions in the workplace.”
Many symptoms can be misinterpreted, said Marina Joseph, director of communication and brand at Parkinson Canada.
Co-workers may mistake tremors for the shakes or a problem with alcohol. Or if a person is frequently getting up to go to the bathroom, he might be seen as avoiding work or taking too many breaks, she said.
“There’s a whole level of stigma and assumptions that people make, and people are actually afraid to disclose to their employer for fear of repercussions and being prevented from promotions or losing jobs that they love because they fear their employer can no longer manage them, whereas… simple accommodations here and there can make the world of difference.”
Making accommodations
Under human rights code and accessibility legislation, employers are obligated to provide accommodations for people with disabilities in the workplace — up to the point of undue hardship, said Gontier.
“An employee has to bring attention to the need for accommodation, especially if they have Parkinson’s because… those disabilities tend to be more often invisible, so employers won’t even know the need is even there.”
On the other hand, employers are also required, to some degree, to observe employees and ask if there’s a need for accommodation, she said.
If an employer, manager or supervisor is seeing things that are cause for concern, “there absolutely is a duty to inquire,” said Amanda Boyce, an associate at Stringer Management Lawyers in Toronto.
“You’re going to want to have a process in place and make sure that’s done properly and in a sensitive manner and confidential manner, and in a manner that ensures you’re not asking any improper questions… in that you’re saying, ‘Is there anything we should know that could be impacting you at work?’ and ‘Let’s work together to see what can be done about that.’”
Obviously, it can be a very sensitive situation, she said.
“We see all kinds of circumstances, depending on what the nature of the person’s job is. Everyone’s disease or disability maybe manifests differently, so maybe for someone who has that diagnosis… it might interfere with the job and maybe for someone else with different symptoms and a different occupation, it might not right away.”
Employees also need to come forward, said Boyce.
“You’re never obligated to give a diagnosis for what you’ve got, it’s all about restrictions and symptoms that you might be having that impact your work.”
And employers will need enough detail in the medical documentation to ensure the work and other workers are safe from an occupational health and safety perspective, she said.
As for making accommodations, “one thing that will be clearly undue hardship from an employer perspective is anything about that person’s disability or restrictions that are making it unsafe for them to perform their job — the HR tribunal and courts have said it’s very clear that’s undue hardship.”
If a worker with Parkinson’s ends up going on long-term disability, it’s important to check in with them regularly. Eventually, there may be a frustration of the employment contract, said Boyce. But that can be a tricky area.
“If there was going to be a takeaway for employers on this notion of frustration of a long-term disability like that, it would be that it’s a complex problem, it’s not as simple as ‘OK, Jane’s gone for a year, we’ve now decided the contract is frustrated.”
