A local MP is hoping to make a difference in an area that hits close to home.
Fort McMurray-Cold Lake MP David Yurdiga has introduced Motion 192, in hopes of having Canadian legislation reviewed and altered to better accommodate those living with episodic diseases.
“My wife (Kathy) was diagnosed with MS in 2004, and it was very emotional, because you don’t know how it’s going to affect that person moving forward,” he described. “She lost the use of her right arm for a while. Luckily, we had our own business, so we could bring in more staff to assist her in her duties, but not a lot of people have that ability to have that support."
This was one of the influencing factors for his motion.
“We just want to ensure these people have access to government programs that they don’t now,” David expressed.
Episodic diseases are known for their unpredictable and "invisible" nature.
Using Kathy's temporary inability to use her arm as an example, David described how this factor can impact an employer's decision.
"There’s a lot of people with episodic disabilities, MS of for example, where the nature of the disease is they’re healthy one day and then the next they can’t even work,” he explained.
For Kathy, being diagnosed with MS meant living in the unknown.
“When I was first diagnosed, it was a very scary time. With MS you don’t know, the doctors can’t tell you if it’s permanent, like if the loss of the use of my hand was permanent or if it would come back, or if it does come back if it would be tomorrow... a month, six months, or a year,” detailed Kathy. “It’s a very unknown disease.”
With this in mind, they began researching what's being done on a government-level to assist those suffering from episodic diseases, only to come up empty handed.
“We knew the system was broken because we couldn’t get the services required,” David described. “I started talking to the MS Society and other groups to get their stories and their professional viewpoint on how to move forward. It was a great learning experience for all of us.”
On Friday, Nov. 2, David's motion passed second reading and will be presented to the Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities to see what can be done "to accommodate a lot of these people suffering from episodic diseases."
David added, “It’s a great step. There are going to be witnesses from various organizations like diabetes, the MS Society, and other groups that will testify before the Standing Committee to express concerns with the existing legislation to see what we can do to ensure that, moving forward, the government policies are inclusive to all people with episodic disabilities.”
That includes the Alberta health care system.
According to David, when Kathy was being treated she required monthly procedures. The procedure itself was covered by the Alberta health care system, however she had to have a referral from a specialist prior to each one.
"The biggest problem is, it sometimes can take six to eight months to get in to see a specialist. That means you can only get one or two treatments per year, when you require it monthly,” David noted. “Those things really cause issues with families that can’t afford to pay out of their own pocket."
Fortunately for their family, they could afford Kathy's treatment, but that's not always the case for others.
"A lot of people don’t have the resources to do that so the suffering that goes on is compounded by the system not recognizing the challenges to get a specialist’s report every month,” continued David.
Now that the motion has received the support of all parties, it will be presented before the Standing Committee.
“We’re going to be looking at what changes need to be done in government legislation and how we can accommodate some of these issues being brought forward,” added David.
David feels that the support his motion had is proof that something needs to be done.
“Everyone thinks this is needed. I’m quite confident these challenges faced by those with episodic disabilities will be addressed in the years to come."
For associations like the Lakeland MS Society, the motion is truly a step in the right direction.
“I think it’s fantastic and it’s so impactful to know that they’re hearing our stories coming forward of how some individuals may have had issues in the workplace. I think it was a personal note on his side of things, just getting the ball rolling and having some of the other politicians on his side, it’s a huge win,” expressed Brenda Rosychuk, manager of the local MS Society.
According to Rosychuk, the average employment rate for people with MS is 60 per cent.
She said, "(They) definitely want to work, but they struggle to continue to work."
Pain, flexibility issues, and lack of accommodation are just some of the factors that come into play for those living with MS.
Kathy agreed.
She said in her situation, having their own business meant she could continue to work with help, but other families aren't nearly as lucky.
“A lot of people in my situation wouldn’t necessarily have that, and they could risk having to take sick leave from work. Is their employer able to accommodate them with the amount of time they may need off? It can be very scary for people,” she expressed.
Rosychuk said, “I’ve been with the MS Society for almost eight years and I see it everyday, the young people who are newly diagnosed and not being able to work. Being 35-years-old and not being able to hold down a job takes a lot of pride out of them... I think it’s not a good feeling knowing that you can’t contribute in that sort of way anymore to your household and your family."
She continued, “I think this is going to show that we’re moving in the right direction. People have been struggling for years. We’re really happy that someone in the political world has taken a step in the right direction."
