Human Resources Committee on Nov. 29th, 2018

[The Chair, Liberal, Bryan May]

Good morning, everyone. We're going to get started here.

Pursuant to the order of reference of Friday, November 2, 2018, and the motion adopted by the committee on Tuesday, November 20, 2018, the committee is beginning its study of M-192, episodic disabilities.

Today the committee will be hearing from witnesses and department officials.

We have joining us here today, MP David Yurdiga from Fort McMurray—Cold Lake. Also appearing as an individual, we have Shauna MacKinnon. From Epilepsy Ontario coming to us via video conference from Toronto, Ontario, we have Drew Woodley, director of government relations. From the Multiple Sclerosis Society of Canada, we have Julie Kelndorfer, director, government and community relations.

Thank you to all of you for being here. We're going to start with seven-minute opening remarks, starting with the author of the motion, MP Yurdiga.

The seven minutes are all yours, sir.

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

Good morning. Mr. Chair, members of the committee, and everyone participating today.

Canadians are excited to have episodic disabilities formally studied by the HUMA committee. I'd like to thank Drew Woodley from Epilepsy Ontario and Shauna MacKinnon from Fort McMurray for their tremendous support on motion M-192.

Special thanks to Julie Kelndorfer and the Multiple Sclerosis Society of Canada, whose support was instrumental in getting this motion to committee.

Over the past few months, I've heard from thousands of Canadians living with episodic disabilities including epilepsy, Crohn’s, diabetes, arthritis, MS and many other episodic disabilities. There's an undeniable fact, episodic disabilities are treated differently from any other chronic disease and disability by government policy.

These inequalities have negative effects on those living with episodic disabilities and their loved ones. In Canada, support for persons with disabilities is built on a binary switch, either you can work or you cannot. However, life with episodic disabilities is not that black and white. Special requirements must be considered for people with episodic disabilities.

People living with episodic disabilities need employment support, improved income and disability support, and increased access to treatment, comprehensive care and housing. They need investment in fundamental research for episodic disabilities and updated disability programs where episodic disabilities are added to the general definition of disability. These changes are fundamental to ensure equality for people suffering from episodic disabilities.

It is up to us, the Canadian government, to take a stand and make fighting MS and other episodic disabilities a priority. I look forward to hearing testimonies from our witnesses today and I appreciate everyone's work on this file.

Thank you.

[The Chair, Liberal, Bryan May]

Thank you very much.

Now we have Shauna MacKinnon for seven minutes please.

[Shauna MacKinnon, As an Individual]

Good morning.

I consider myself to be one of the luckiest people in the world. I was diagnosed with MS in January 1998. I was lucky because I had a family doctor who recognized my symptoms right away. I lived in a city with a dedicated MS clinic. One of my neurologists was a well-known and respected clinician. I have a positive outlook on life. I am educated and have a natural curiosity about everything, especially the brain. I adopted researching MS as a new hobby.

When I was laid off nine years ago, I went back to school for a business diploma in order to find work. After a year of working two part-time jobs with no benefits and no prospects in Halifax, I left my family and friends for a job in Fort McMurray.

I try to look after myself. I hit the gym three times a week and volunteer in my community. I've been a guinea pig for MS research and continue to add to the knowledge of this disease by participating in research by the medical community. I've participated in 11 different long-distance bike rides to raise funds for the MS Society of Canada. I raise awareness about MS.

I tell you all this to illustrate my sense of responsibility to myself, my family and others with MS, but I am terrified about my future. What will happen to me if I do become disabled?

The nature of MS is that I don't know when I will get better. I don't know if I will get better. I look and feel pretty good right now, but next week I could be in a wheelchair. If I became disabled next week I may not qualify for EI, sickness and/or CPP disability benefits, because I don't know how long I will be disabled.

The first question you are asked when filling out forms to determine if you're disabled is whether your impairment has lasted or is expected to last for a continuous period of at least 12 months. Your guess would be as good as mine. The only options I have to answer this question, though, is a yes or a no.

I'm truly grateful for universal health care. However, if I do become disabled and am unable to work, how do I cover my medical expenses? I have some coverage at work, but I am also paying for private health insurance. Without it, I'm afraid of having to choose between seeing a dentist and paying rent. I live in Alberta, where my MS drug is mostly covered by the province. I still have to get extra non-group insurance at a monthly cost to myself, in order to continue on the drug.

I was diagnosed with depression five years before I developed MS, which is not unusual. It occurs frequently in people with MS. In my case and for many others, depression clouds your judgment and ability to interact with others. Luckily for me, I've been on medication for years, which has allowed me to live a mostly depression-free life. Others aren't so lucky, either with medication or learning how to cope. If you're already depressed and then faced with disability, loss of income and perhaps changes in family dynamic because of it, getting through forms and dealing with EI or Service Canada is going to be a monumental task.

If I do become disabled, I need to maintain a social support network. I can't do that without some sort of income. I have been witness to young people with MS going into nursing homes because they aren't able—and just can't afford—to look after themselves. I do not want to be that person in a wheelchair waiting anxiously for someone familiar to walk through the door, or wondering if we're being served meatloaf again tonight. I want to continue to live a full life.

If I have a relapse and I'm sidelined for six months or longer I will be in financial difficulty. If I had a broken leg, I'd know an approximate amount of time to expect to be away from work and on reduced income. With MS and other episodic disabilities, nobody knows.

I'm a realist. I know that I will probably face disability at some point in the future, but my biggest fear is not that I will lose the ability to walk or see. What I fear most is that I will not have the ability to continue to work and contribute financially to my own welfare.

I am one of the lucky ones with MS. I am currently employed full time with a company that respects and supports me. I have a support system outside of work and I can advocate for myself. Not everybody is so lucky. That's why I'm here today.

Thank you.

[The Chair, Liberal, Bryan May]

Thank you very much.

Coming to us via video conference from Toronto, Ontario, is Drew Woodley, director of government relations at Epilepsy Ontario. You have seven minutes, sir.

[Drew Woodley, Director, Government Relations, Epilepsy Ontario]

Thank you, Mr. Chair.

Good morning. I would like to thank the HUMA committee for investigating the needs of people living with episodic disabilities and inviting me to participate today. I will be speaking primarily about epilepsy, but many of the issues I'll mention are common to episodic disabilities.

Epilepsy is a brain disorder characterized by recurrent seizures. Seizures can take a number of forms depending on the person and portion of the brain affected. They are typically treated with medication, but other treatments such as surgery and diet may also be used if necessary, depending on the seizure type.

More than a quarter of a million Canadians live with epilepsy, approximately 30% of whom do not have effective seizure control. Beyond the seizures themselves, people living with epilepsy are profoundly impacted by the psychological, social and personal effects seizures can have. Rates of mental health issues and unemployment are both higher among the epilepsy population. Feelings of fear about when the next seizure might come and loss of independence are common. Side effects from medications necessary to control seizures include impacts on mood, behaviour, sleep, concentration, memory and energy.

Epilepsy is a truly episodic disease. Seizures themselves do not occur on a fixed schedule. When seizures do occur, they typically last only a few minutes followed by a recovery period, and do not necessarily require a hospital visit. They can significantly disrupt, or only temporarily interfere with, a person's school or workday. The impact of epilepsy on employment often has less to do with a single seizure and more to do with how frequent the seizures are, or the psychosocial challenges affecting the person's ability to function.

People living with dozens of seizures per day would have a very difficult time remaining employed. Others with less-frequent seizures and a supportive working environment could have minimal disruption to their employment. However, for many living with epilepsy, the reality falls somewhere in between. People can go for days or weeks between seizures, but then have several in a short period of time. Others can have them on a frequent but unpredictable basis. These situations can be physically and emotionally trying for individuals.

Beyond the seizures themselves, the mental disruption to cognition and memory that can accompany having frequent seizures is very real, as are medication side effects such as behavioural changes, sleep disruptions, lethargy and drowsiness, impacting the capacity for employment or limiting the amount of work a person can do. Triggers, those things that are likely to make seizures come about—such as stress or long working hours—often lead to an increased likelihood or frequency of seizures for people with epilepsy, compounded by many people not wanting to disclose the condition to their employer for fear of losing their job.

Comorbidities, those other conditions that have higher than average prevalence among people living with epilepsy—such as mental health issues—further exacerbate these challenges. In some cases, particularly if the epilepsy diagnosis happens when the individual is a child, parents' lives can become significantly disrupted as well. Having to bring children home from school following a seizure and the other challenges of supporting a child with a serious medical condition can easily pull a parent out of the workforce.

All of these facts can have significant effects on the ability to work, beyond the relatively brief amount of time that someone is having a seizure and needs to recover afterwards. As has been noted by others, Canada's social safety net too often defines someone as disabled or not. It considers a disability to be temporary or permanent, but not episodic—someone can or cannot work. Epilepsy simply does not follow that kind of pattern.

The CPP disability program does not have the flexibility to support repeated but not permanent interruptions in the ability to work. Further, it requires a history of employment so that minimum CPP contribution levels qualify an individual for benefits. In effect, only those individuals who have continuing and severe epilepsy, and who have been able to work for a significant portion of their adult life immediately before the onset of seizures, will qualify.

A person living with epilepsy may well be impacted by repeated interruptions to their employment over the course of a year, but the relatively short period of interruptions would not qualify them for EI sickness benefits, even though the combined effect might be comparable to someone who has had their employment interrupted enough to qualify for the program. Those applying for the disability tax credit often have a difficult time articulating how the effects of epilepsy and other comorbidities and the episodic nature of the disease have a very real impact on their daily lives, and so do not receive the credit.

Creating a more flexible definition of disability to include episodic disabilities—either with partial ongoing coverage, or with a new category for such situations—would have a significant impact on the lives of people with poorly controlled epilepsy and their families.

It is our hope that the government will review and update the criteria for such programs. Thank you.

[The Chair, Liberal, Bryan May]

Thank you very much.

Now from Multiple Sclerosis Society of Canada, we have Julie Kelndorfer, director of government and community relations.

[Julie Kelndorfer, Director, Government and Community Relations, Multiple Sclerosis Society of Canada]

Thank you, Mr. Chair.

Good morning. The MS Society would like to thank MP David Yurdiga for sponsoring motion M-192 and this committee for taking the time to study and create recommendations to improve the lives of Canadians living with episodic disabilities.

Let me start with a story.

Imagine this picture: a 29-year-old university graduate, wife and mother to a one-year-old son, starting out her career in the non-profit sector. She walks into the doctor's office one day and walks out not knowing the journey that lies before her. Why? Because she has just been diagnosed with MS. That woman was me 14 years ago.

How would you react when you are told that you have an unpredictable, often disabling disease of the central nervous system, affecting your brain and spinal cord, and they can't say what lies ahead? They tell you that you're one of the 11 diagnosed every day, that it happens to women three times more often than to men, and that Canada has one of the highest rates of MS in the world, with over 77,000 Canadians living with the disease. The problem is that they can't tell you what, when and how severe the symptoms will be, like the ones I've experienced, from fatigue, pain, numbness, spasms, tremors, vertigo and weakness. This is because the symptoms of MS depend on what part of the brain and spinal cord are affected. This can greatly vary from person to person, and from time to time in the same person.

I left that doctor's office, got into my car, called my husband, cried and told him, “Whatever happens, please, I don't want to live in long-term care”. Why was that my reaction? Because that is what I knew of MS at that time. My aunt had passed away when she was in her fifties from a progressive form of MS. She could no longer move on her own or speak except to nod her head. She lived in a long-term care facility with individuals two and three decades older than she was. I was scared that would happen to me. I didn't realize there were others living with this disease and that they didn't have the progressive form that my aunt did. They had what I had been diagnosed with, relapsing-remitting MS.

Relapsing-remitting MS is characterized by unpredictable but clearly defined periods, during which symptoms are apparent. Relapses can last for varying periods, from a few days to several months, and are followed by periods of remission, during which many functions return. Approximately 85% of people diagnosed with MS have this type, also referred to as an episodic disability.

MS impacts all Canadians. It is a disease that affects not only the individuals but also the families who come together to manage the realities of MS. The unpredictable and episodic yet progressive nature of MS makes it a challenge to maintain financial security and to navigate health and community support systems, including access to treatments, care and appropriate housing.

When I was diagnosed, I worried about our family's financial security. My son was just one year old. We were just starting out. We had a mortgage, car payments, student loans and other expenses. What would happen if I had a relapse and I couldn't work full time and needed to work part time while recovering? Were there financial supports that could help me? What I learned then, which is still relevant today, is that the current disability income and employment support programs in Canada were not designed with episodic disability in mind. Many of these programs to support persons with disabilities are built with that binary switch—either you can work or you cannot work—leaving out many people with episodic disabilities who want to work but struggle to continue to work.

This is why the MS Society recommends improving income and employment security by making these supports and programs more flexible and inclusive by including episodic disability in the basic definition of “disability”, changing eligibility criteria and updating policies and legislation across programs, such as employment insurance sickness benefits, Canada pension plan disability, and the disability tax credit.

Being able to stay employed means I've had access to MS disease-modifying treatments approved by Health Canada to reduce relapses and disability progression. Because I've been able to access these medications and other extended health benefits, I've been able to stay working. It becomes a catch-22. Staying healthier for longer periods and reducing the severity of periods of illness when they do occur are key factors in job retention for people with episodic disabilities. Access to affordable medications and health benefits is imperative. Access to treatments and health care is key for people living with episodic disabilities.

This disease, MS, creates a life of uncertainty and unpredictability, but what should and can be certain and predictable are the supports people with MS and episodic disabilities have. I commend this committee for studying this motion, thus increasing awareness of episodic disability in Canada. By viewing policy and legislation through an episodic-disability lens and recommending important changes, we will achieve better equity in the supports for Canadians living with episodic disabilities.

Thank you very much for this opportunity to speak.

[The Chair, Liberal, Bryan May]

Thank you very much to all of you.

We're going to start questions today with MP Diotte, for six minutes, please.

[Kerry Diotte, Edmonton Griesbach, CPC]

Thanks to everyone for being here. I know it's difficult to tell stories at times, but it's the best way for us to really wrap our heads around what the experience is.

I just want to start with you, David.

Could you tell the committee what your personal connection is with MS?

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

Thank you, Kerry.

In 2014, my wife was diagnosed with MS, and it took a long time to get there. She had some challenges with vertigo, and nobody realized what it was. She went from specialist to specialist, but when she was diagnosed, we went through emergency, they did a brain scan and then she was diagnosed with MS.

The challenges were the next steps. What were they? There's not a lot of support out there. Thank God for the MS Society and for all the information they provided, but not knowing what tomorrow's going to bring.... For my wife, currently, sometimes when we go to a function, flashing lights set her off. All of a sudden, she feels pain and we have to leave.

A lot of times I really irritate my wife because I call her name out every once in a while. Sometimes she goes into this mode of brain fog. She is not really communicating with me. That's why sometimes I become an irritant, but I'm really concerned about whether she's having an episode.

There are so many unknowns. In terms of the support out there, I hear about a lot of cases. Many people came to our office saying that they can't qualify for disability benefits because they're not really disabled. They're just inconvenienced. I read a lot of these letters and everything else. Do you know what? Unfortunately, we need the definition changed of disability to include episodic disabilities, because the system looks at you and says, “You don't qualify”. These people have to face the unknown by themselves, looking for help and wondering how they support themselves.

Fortunately, we were able to manage and didn't need a second income, but I'm really concerned about the individuals and families who don't have that luxury.

It's about making sure families are strong, making sure that they can be part of the community and not a negative factor for the community, but a positive. We need government help for that.

[Kerry Diotte]

Thanks for that.

Shauna, I'm wondering what your biggest fear is, living with an episodic disability like this. I see from your background that you're a radio announcer and that's a pretty demanding career, with a fair amount of stress and so forth. What's your life like?

[Shauna MacKinnon]

I have a great life right now. As I've said, I am extremely lucky to have been raised the way I was and to have gone through what I've gone through with the support systems. But I have aging parents, and our biggest fear is that I will not be able to look after myself financially. I've been saving money since 1989, putting money into RRSPs back when interest rates were like 10%. For a couple of years, that was great.

However, what happens if I become disabled next week and I have to dip into those RRSPs? That's fine and dandy for the short term, but 20 years from now, what is that going to cost the government? If I can't get disability now, because it's only episodic and not a full-time disability, how is that going to affect the government coffers in the future when I do depend on them? What is that going to do to my RRSPs now if I have to take money out? I'm going to lose a whole bunch of money that could better be spent gathering interest for my future retirement. My biggest fear is not being able to look after myself financially.

I don't want to have to go into a nursing home and be sitting there, as I mentioned, wondering what's going to happen to me. I won't be able to maintain my support system, my network of friends. I won't be able to go out just for coffee or a meal if I don't have an income—all those little ordinary things. How can I maintain a gym membership if I don't have income? That's part of what keeps me healthy.

Again, my biggest fear is not being able to support myself financially.

[Kerry Diotte]

Thank you.

Julie, you have a demanding job as well. We know each other quite well. You do amazing work. Has it impacted your job, and can you explain to us the kinds of challenges that you face?

[Julie Kelndorfer]

Disclosure is a huge issue for individuals living with episodic disabilities. Who do you tell? What do you tell? When do you tell it? I face that same thing. While I wasn't working at the MS Society when I was first diagnosed, I felt those same things. Even in job interviews, further along, what do you say? Do you disclose? I'm a fairly authentic person, and I felt the need to be honest and authentic, but at what risk? It's a huge issue for people, and I don't believe our system is well set up to support people early on in their diagnosis of episodic disability. I think vocational rehabilitation is a very important piece of the solution.

I've been able to, with the support of a very.... I work at the MS Society. It's a really good deal for me. They understand, though, that I do require accommodations—a flexible working schedule, being able to work from home, flexible hours. These are some of the job accommodations that help people with episodic disabilities to remain working, and that's a big thing.

The other thing, and I mentioned it, is access to medications, affordable treatments. I've been able to successfully use disease modifying therapies to alter the course of my disease. Those are things that have helped me be able to remain in the workplace, which is really important for people to be able to do.

[The Chair, Liberal, Bryan May]

Thank you.

Up next we have MP Long, please.

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

Thank you, Mr. Chair, and thank you to our witnesses this morning.

MP Yurdiga, you've done a great job on this motion.

I'll just give you a 30-second glimpse into my past. In my twenties, which wasn't yesterday, I suffered from anxiety. It was a terrible time for me. It was probably a three-, four-, five-year period during which I was almost paralyzed with anxiety. I remember how it was a chore to go to work each day. I would have it mapped out what I would do when I got to work, but there were times when the anxiety got so bad, I had to go home. I just couldn't deal with it.

I look back and thank God that I had an accepting, supportive employer to help me through that, but I see so many instances—whether it's with mental health, epilepsy, chronic pain, what have you—where there is that stigma attached. Although some employers understand, many just don't. They say, “Oh, there he goes again” or “There she goes again”.

Anyone in the panel can jump in on my question. What can government do to work with partners to address that stigma? What's the first step we should take?

Ms. MacKinnon.

[Shauna MacKinnon]

I would say education.

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

Okay, so how would you do that?

[Shauna MacKinnon]

Again, I have a fantastic employer. If I have a problem being accommodated at work, I just have to call her.

This happened just after the fire, two years ago, in Fort McMurray. I was working in the news department. I was working right through the fire, right through evacuation and everything else.

I knew, after about six weeks—if there is a stressful event it takes about six weeks for it to have an impact on me, physically—I was feeling the physical effects of that. I told my employer that I was going to need to take a week off because of that.

At the time, they had gotten rid of one of our employees, and they said, “No, we can't give you the time. We want to give you the time off, but we can't give it to you right now.” I said, “Well, I've started dropping things. That, to me, is the first sign that I am going downhill physically. I am being affected by the stress of the past six weeks. I need to take that time off.”

It was a matter of my calling human resources and their saying, “No problem. Schedule the time off and take it.” They knew my physical condition was on the decline because of the stress, so they knew I was going to need the time off, and they arranged it.

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

Just let me jump in, if you don't mind. You had a supportive employer.

[Shauna MacKinnon]

Yes, I did.

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

What can we do to help educate and turn the tide? There is Bell Let's Talk, and there are other great initiatives out there that are bringing mental health issues out into the open so that people are less reluctant to talk about them.

What can we as a government do, though, to educate employers?

[Shauna MacKinnon]

It could be laws or guidelines saying this is how people with episodic disabilities should be treated. I am saying that my employer is educated on the disabilities that are out there and what the effects are.

I am not sure what the process is for changing things, because I don't know exactly the inner workings of government. I guess just improving education, perhaps.

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

Thank you.

Ms. Kelndorfer.