Human Resources Committee on Nov. 29th, 2018

[Julie Kelndorfer]

The MS Society has been involved with the Conference Board of Canada as well as the Public Policy Forum. They have looked at MS in the workplace. The Public Policy Forum report called “Condition Chronic” looks at chronic disability and diseases.

If you look at the key messages in such reports, the broad message is that, really, we need to look at a fundamental renewal of our support system. Having this committee look at it is a first step to using that episodic disability lens.

In terms of the stigma piece you're talking about, it's education awareness. One of the suggestions in the “Condition Chronic” piece is putting together a national strategy in terms of employer best practices. In the last 10 years I've seen movement in the episodic disability arena in terms of some research, but we need more. We need to look at that. Stigma is definitely hard, and what perpetuates it is that individual you hear in that situation.

[Wayne Long, Liberal, Saint John—Rothesay, NB]

I just want to get Mr. Woodley in here, too, if we could.

[Drew Woodley]

I agree with all of the comments made so far.

From the epilepsy perspective, the resources are there in terms of information. Epilepsy organizations across the country have developed really excellent resources and tools to inform employers about episodic disabilities—epilepsy in particular, but more generally as well.

Where we run into difficulty is having the resources to actually go into the workplace and meet with them. The most effective way to do this, particularly if there is an individual employee involved who is also a client of the agency, is to have staff go in and work with the employer on accommodation and on educating the entire workplace.

Epilepsy Toronto, for example, has an excellent program that allows them to do this, but that's an exception across the country. In a lot of cases it's a resource issue of the local community agencies not having the capacity or the staff to do this en masse.

With some dedicated support from the government toward this kind of project, I could see that would be the next logical step forward.

[Wayne Long, Liberal, Saint John—Rothesay, NB]

Thank you very much, everyone.

[The Chair, Liberal, Bryan May]

Thank you.

Madam Sansoucy.

[Brigitte Sansoucy, NDP, Saint-Hyacinthe—Bagot, QC]

Thank you very much, Mr. Chair.

I thank all the witnesses.

In the context of this study, I would first like to be transparent by sharing some personal information that has been known in my community for a long time. I was diagnosed with fibromyalgia in 2001.

Ms. MacKinnon, I really recognized myself in your story when it comes to this way of empowering ourselves to live with our disability, but also the opportunity given to us. I am a member of the fibromyalgia association in my region, and I have been able to see how difficult it can be for the women I meet, as this disability affects mostly women. A young woman in Saint-Hyacinthe ended up in a seniors residence in her twenties. It is difficult for her, but she has become president of the association. When I saw the list of episodic disabilities in the Canadian survey on disability, I assumed that fibromyalgia would be included in the chronic pain category, but the disease was not to be found there. So you will understand that my questions won't relate to your daily life because I am very familiar with it.

I will rather turn to the representatives of the two associations, Mr. Woodley and, Julie, if I may call you by your first name.

Some studies show that people living with episodic disabilities risk ending up in a worse financial situation if they return to part-time or intermittent work. It is very important to address this in health insurance or employment insurance programs because many people don't have private insurance. It is in this spirit that I proposed a motion that echoes the one proposed by my colleague Mr. Yurdiga where I ask that we hear from experts, the sick and health professionals on reviewing the current employment insurance program, which provides only 15 weeks of benefits for sick people. I think the period should be extended because we know that more than one-third of sick people have used up the 15 weeks they are entitled to.

So I would like to hear your thoughts, Mr. Woodley and Julie, on how we could reform the Employment Insurance Act and enhance those sick benefits. In your opinion, how many weeks would be needed and what kind of flexibility should we show when it comes to episodic disabilities?

[Julie Kelndorfer]

In terms of the EI sickness benefit program.... First of all, in regard to the clawback you talked about and how they're worse off if they work. For example, a person with MS who is experiencing a relapse and is only available to work part time, they get docked, then, dollar for dollar for their clawback. Does it make sense for them to work? If you do the math, it doesn't make sense. We would like to see the clawback reduced.

I do want to point out, though, that the working while on claim has been extended to include EI sickness benefits, so we're hoping that makes a difference so that will be improved. But really, I think taking that piece out altogether would be supportive.

Increasing the weeks to match the compassionate care benefits I think is reasonable. We recently did some work with the Conference Board of Canada looking at the costs of increasing the weeks but also—it's early on too—in terms of the eligibility and the number of hours. We're talking about people, women, in precarious and part-time work these days, and being able to even have enough hours to qualify for EI sickness benefits is a difficulty. The Conference Board of Canada looked at the costs associated with reducing that. I think that's something we need to look at as well.

Additionally, there's the flexibility. That whole week...if you work one day of that whole week, you lose your entitlement for that entire week, so then you only have 14 weeks left. We also think that can be changed, in terms of the flexibility in the calculation. It's important and, honestly, there should be an increase in the amount people receive. It is very little, even when they access it, if they are able to access it.

[Brigitte Sansoucy, NDP, Saint-Hyacinthe—Bagot, QC]

Mr. Woodley, would you like to add anything? Let's not forget that about 34% of women have access to employment insurance, that an average of 40% of people with episodic disabilities have a severe or very severe disability and that employment insurance sickness benefits account for 55% of insurable earnings. How many additional weeks of sickness benefits would you suggest?

[Drew Woodley]

I think it might be helpful to think of it less in terms of weeks and more in terms of days. Fifteen weeks is 75 working days, so as Julie mentioned, if you're missing one day of work per week but you're able to work the other four, having a system where your claim stays open and you can have coverage for that single day that you missed, or two or three days in a two-week period, that sort of thing, that would be a logical first step. The total number of days isn't actually greater than the current system, but you're able to take them in shorter amounts over a longer period of time.

I think for most people these conditions last years. Certainly having a longer term number of weeks over an extended period of time where there is no medical likelihood of remission, or in the case of epilepsy, where it could be a significant amount of time before someone is able to achieve seizure control through medication, I think that would be an important second step.

I'll also mention, in terms of medical coverage, one of the issues we're concerned about in Ontario. The provincial government recently announced that they're moving to align their definition of “disability” for the Ontario disability support program with the federal definition. Currently the Ontario definition is somewhat broader. For a condition that requires constant medication to manage seizures, even if seizures aren't fully controlled, the possibility of people not being able to enrol in that program because the definition is tightened, and losing the medical benefits that go along with it, is a very serious concern as well.

[The Chair, Liberal, Bryan May]

Thank you.

MP Ruimy, please.

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

Thank you very much, everybody, for being here today. It's not an easy study. If it was just focused on MS, it would probably be a little bit easier, but it's focused on a lot of different things, a lot of moving pieces.

First off, you mentioned, Julie, a Conference Board report. Could you forward that to the clerk so we could take a look at that?

[Julie Kelndorfer]

Yes. There are two Conference Board reports in the “MS in the Workplace” series. There's also the Public Policy Forum work on “Condition Chronic”. The fourth one I'll mention is the Institute for Research on Public Policy. It's called “Leaving Some Behind: What Happens When Workers Get Sick”. I can forward all four of them.

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

That would be helpful.

A lot of the things we're talking about are wide-ranging. They involve, perhaps, the federal government, provincial government, health care, that sort of thing.

Shauna, you mentioned your struggles and the medication. Maybe everybody can contribute to this. What I first want to know is, where's the province in this? What are they doing? How are they supporting? Health care is primarily a provincial jurisdiction. In fact, about a year ago, when we signed the health accord, the federal government gave $5 billion for mental health care across the country. That money's supposed to be spent on health care, and some of the conditions that we're talking about are mental health care. It'll be interesting to see what's being allocated to that.

But for now, can you just tell me your experiences with the provincial governments? Where are they supporting? Are they paying for those medications and that sort of thing?

[Shauna MacKinnon]

I can't speak for all of the provinces. I know my experience in Nova Scotia was that my drug was completely covered by the Nova Scotia government, so I went to the hospital every three months and picked up my prescription, which would last three months. Much like Julie, I'm on a disease-modifying drug as well.

In Alberta, I had to apply for Blue Cross non-group life insurance, or some such thing. I can't tell you exactly what it was. I pay $65 a month for that, and then my drug is completely covered. This drug ranges in price from $20,000 to $30,000 a year. That's the approximate cost of drugs to the provinces. I can't speak to the other provinces. I don't know. Most of them cover the drug to some degree.

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

Thank you.

David.

[David Yurdiga, Conservative, Fort McMurray—Cold Lake, AB]

The biggest concern I have is not only obtaining the medication you need, but accessing specialists. A lot of times individuals sometimes have to wait over a year just to see a doctor. If they need a medication change, they have to wait a year. A lot of times, for my wife, in particular, if she needs a change in her medication, or whatever it may be, she has to wait. The wait times are getting longer and longer.

I think we have to have a paradigm shift and focus on where the dollars go. We need specialists. We need easy access to the specialists. Time is everything, especially when you have an episodic disability. The earlier you catch it the quicker a person will be able to participate in the workforce again. It's all about educating the employer and controlling the disease by getting the proper medical attention.

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

When you actually did get the specialist, was the specialist the appropriate specialist? Was it somebody who was able to address those issues?

[David Yurdiga, Conservative, Fort McMurray—Cold Lake, AB]

One time, my wife had a severe reaction. We didn't know that she had MS at the time. We entered emergency. She lost total use of her right side, so the first thing that came to my mind was that she had had a stroke, so off we went to the hospital. She was able to access a specialist who was at the emergency. They did a bunch of tests, and then we found out that she had MS. For the next step, we had to wait a year to see him again. That's a problem.

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

I can see how that would be quite scary.

Julie.

[Julie Kelndorfer]

In terms of wait and the appropriate use of medical practitioners, I think it also speaks to the programs, where we ask for medical certification and by whom. I think that's also part of the issue for people with episodic disabilities, and people with disabilities as well. You have to get all of these certifications from specialists, and if that specialist happens to be a neurologist with the wait times.... We're compounding it through our systems. Part of that fundamental renewal is to look at how we're best utilizing the entire system in order to support people.

[Dan Ruimy, Liberal, Pitt Meadows—Maple Ridge, BC]

Thank you.

Drew.

[Drew Woodley]

In Ontario—I can only really speak to Ontario on this point—whether or not it's relatively easy to access a neurologist depends on what part of the province you're in. In northern Ontario, there are some difficulties with epileptologists in particular. I don't think any neurologist is waiting for patients to come through the door. I think it does take a while to see them.

Recently, the previous provincial government invested a significant amount of money in epilepsy surgery beds, which can have a profound impact on people with particular types of seizures, potentially ending the seizures for their lifetimes, but that's a fairly small portion of the population for whom that could have a huge impact on their lives.

One of the things we have recognized is that there's a really important need for community management and community education to help people manage their epilepsy at a community level, and that's a big part of what the epilepsy agencies in Ontario do. That has not been a priority for the province in terms of funding. In particular, for the 30% of people who don't have well-controlled seizures, who need management education, who need education simply about when they have to go to the emergency room and when they don't, following a seizure, those are the resources we've identified as possibly a priority.

[The Chair, Liberal, Bryan May]

Thank you.

Mr. Morrissey, please.

[Bobby Morrissey, Liberal, Egmont, PE]

Thank you, Chair. The first part of my question I'm giving to MP Vaughan.

[Adam Vaughan, Liberal, Spadina—Fort York, ON]

My role here, as parliamentary secretary for the minister who has carriage of EI in particular and of some of the other benefits, is a little different from the other committee members, but I do have a question. This is one of several studies we've received at this committee that has sought to renovate the EI program to accommodate very compelling and very important dynamics that are emerging as the workplace changes, but also as our understanding changes of what constitutes disability and other elements beyond that. Bereavement for sudden infant death is an issue we're also contending with. All of it ties back into EI because EI is the one federal social assistance program that people turn to when they ask themselves how they can modify dynamics to support income.

What we're running into as a country is that it's an insurance program. As you expand the benefit requirements of the program, at some point it adjusts the actuary table, and you have to start dealing with the way in which it's funded. Somebody has to pay for this insurance process, and that's the EI contribution that employers make and that workers make when they work. As you said, if you're in a part-time job and you don't pay enough, you don't qualify. If we're going to give benefits without paying in, the math doesn't add up at a certain point. That's one challenge.

Clearly, there needs to be comprehensive EI reform, but where we're also hammered on this is that every time we talk about EI reform, it's referred to in Parliament and in political circles as a payroll tax. It's said that we're destroying jobs and destroying the economy. “Don't touch the payroll taxes. It's a payroll tax”—that's the political wall we run into.

How do we deal with those ideologues who see every adjustment to an insurance program...? CPP is included in this. When you change CPP, they go crazy as well. How do we get past that wall if some of the very people who are asking us to fix EI don't want us to actually pay for it with EI premiums?