Evidence of meeting #52 for Human Resources, Skills and Social Development and the Status of Persons with Disabilities in the 41st Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was child.
A recording is available from Parliament.
NDP
Jean Rousseau NDP Compton—Stanstead, QC
Every case should be considered individually. Sometimes, family life is disrupted for 10 years after a child goes missing and is never found. Sometimes, parents never go back to work.
Liberal
The Vice-Chair Liberal Rodger Cuzner
Thank you very much. You might want to comment on that at a later time.
Mr. McColeman, go ahead.
Conservative
Phil McColeman Conservative Brant, ON
Thank you, Mr. Chair. You're doing a fine job.
I'm going to speak with two different hats.
Ms. Guérin, first of all, I'm going to speak with you because I am almost a mirror image of your story. My 26-year-old son was diagnosed at age 2 and is a cancer survivor, but part of the side effects were cognitive and intellectual disabilities, and he will be in our care for the rest of his life as a result.
I also would speak for communities in this country and Canadians in general, having been through and experienced what you've been through. We spent over 270 days in hospital with our son, either my wife or myself always by his side.
I was a small business owner. We know small businesses employ over 70%, and in my community and, I believe, a lot of communities, a lot of employers have compassionate policies, even if they may not be written down, regarding how they handle their staff when things like this happen.
I'm going to make comments more than questions, and I'd like your views on whether you've experienced anything that my wife and I and my other three children have experienced through this process.
In my community, when there's someone who's in really dire need, charity groups and the general community hold fundraisers for these people. We do things such as alleviate some of their financial expenses, although it'll never be enough. Government will never provide enough and the community will never provide enough. All of these things will never be enough.
That said about a community and a caring country, I believe this is a caring policy that government has finally brought to the table for people in our situation. In terms of family support and support groups, in our case, there was a group called Help a Child Smile, started by two parents from Welland, Ontario. It has just blossomed and helped very many families. When a true economic need has been there, they've come in to supplement and to help. The Canadian Cancer Society, I believe, helps out financially with family support in certain circumstances. All of those things, I think, add to the mix.
We're coming in as government now to say that here's an area where we can help supplement and ease the burden that all of us have felt and that we've seen in other families. My recollections were exactly your recollections of those children, in those rooms without a parent. It's just unbelievable to see that's the case.
I'll finish, and then if there's any time, I’ll have you comment. I apologize, but I just had to share those views with you. I think we live in a wonderful, caring country, at least in mid- and small-sized communities in Ontario where I come from, and in the rest of the country, the community rallies behind its members in this situation.
You can split it between spouses. That is allowable under the bill. You can take it flexibly, so you could take four days at a time, and then split it and take another interval, so you can split it based on treatments, which I know is very important, again, having been there. You can reapply every year. It doesn't have to end in one year. The bill does allow for those three things, and I wanted to clarify that point.
If there's any time left, Mr. Chair, perhaps the witnesses individually could underscore some of those other supports.
As an Individual
I can start.
I completely agree with you. The community support has been outstanding. Everyone at my child's school has helped whenever they could. My employers and all my friends have told me to do whatever it takes to help my son.
The charity involvement has been incredible, so much so that I now have become one of the vice-presidents at Leucan, on the Quebec side. As well, I've been involved with Candlelighters.
It's just incredible what these charities do for us. They help pay for parking. They help pay for the kilometres back and forth. They provide a lot of financial services, but their funds are only based on what they can raise. The number of families is growing exponentially, which therefore reduces the amount they can help each family with.
Also, I find the support is bigger in larger cities, such as Ottawa. You get up north or in more rural areas, where there aren't as many charities involved, where there aren't as many hospitals dealing with pediatric cancers, and their resources become fewer just because of the regional aspect of things.
I really cannot stress enough how wonderful these charities are. However, we do need more financial support that's more standardized throughout the country, no matter what province you live in or whether you're in a rural or urban setting.
As an Individual
I'd agree with what she has said.
I have found over the years that I've received letters from people saying that their company tells them they can come back when they get reorganized. Then they discover that everything keeps going down, down, down—a partner leaves, or something—and they have to go on welfare. They are told that they can no longer accept that deal with their company. They have to give up everything. As well, sometimes a child cannot return to school because the child is immune-depressed. This makes it very difficult.
Charities, yes, are wonderful. Churches and all the different charities have been fantastic, coming into gear and raising some funds, but it's also a matter of the very beginning, I feel, and this is where the government bill comes in handy. These people have been independent. These people, or a lot of them, haven't taken any charity, and they'll say they wish they had a little time to adjust to the financial situation and appreciate the charity that they are getting.
This would be very, very helpful.
Liberal
NDP
Ryan Cleary NDP St. John's South—Mount Pearl, NL
Thank you, Mr. Chair.
Ms. Roy, your daughter, I'm sure, is lucky to have you. It's not just that you seem like a wonderful person; you're also a nurse, and you understand the medical system.
You've been off since May, you said. I hope you don't mind my asking, but what have you been living on? Have you been getting benefits since you've been off since May?
As an Individual
I am on disability insurance through the hospital. But the hospital disputes my leave regularly. Every month, I have to go to the doctor to confirm my illness. He changes the diagnosis, because the hospital would deny my leave otherwise. He diagnoses me with situational depression. I can't say that my daughter has cancer or the hospital would deny my leave. Unfortunately, that is how the system works for someone in the health care field.
That is my experience. Sadly, there are a number of us nurses who have a child with cancer. Their experience was the same as mine, so I already knew how things worked. It really takes a toll, emotionally, to have to fight for leave, on top of having to fight for your child.
NDP
Ryan Cleary NDP St. John's South—Mount Pearl, NL
What kind of leave, specifically, did you request? Is it compassionate leave, is it family leave, and with your current employer, what's the length of leave that you're eligible for?
Your daughter was diagnosed with cancer in May, and they're still giving you that hard time?
As an Individual
Yes, it is hard even though the oncologist at CHEO—I work in Quebec—wrote me a letter to give my employer. When it concerns my daughter, my employer will not approve my leave. That is why the doctor had to change my diagnosis to situational depression. The hospital still gives me a hard time.
In fact, I received another letter. I had to go to the doctor. I even had to see a doctor designated by the hospital to assess my situation and determine whether the hospital had grounds to dispute my leave. If the hospital does challenge my claim and I don't go back to work, I will lose my job. You always have to fight and it's extremely trying.
I am lucky to have disability insurance, but I still have to fight with my employer every month to justify my leave. It doesn't matter that the oncologist provided a detailed explanation indicating that Sabrina would have to undergo radiation treatment every day for eight weeks, on top of chemotherapy.
NDP
Ryan Cleary NDP St. John's South—Mount Pearl, NL
Thank you.
This question has been asked, but I want to ask it again to you specifically.
Your daughter is 16 years old. If she was 19, would her needs and your support that you're offering be any different?
As an Individual
Do you believe your child needs the same love at 18 years old as they do at 16? I think they do. You can't compare the situations on the basis of age. No matter how old they are, children need their parents, not strangers. I can tell you that with my heart and soul.
NDP
Ryan Cleary NDP St. John's South—Mount Pearl, NL
I'm a father of two boys and I knew my answer, but I just needed you to express that.
NDP
Ryan Cleary NDP St. John's South—Mount Pearl, NL
Do I have time for another quick question, Mr. Chair?
Liberal
The Vice-Chair Liberal Rodger Cuzner
Not really. No, you have about 15 seconds, so we're going to move over.
Liberal
Conservative
Brad Butt Conservative Mississauga—Streetsville, ON
Thank you very much, Mr. Chair.
Ladies, thank you very much for being here.
As you're probably aware, Bill C-44 proposes to change two different systems. The first is the Canada Labour Code, which governs federally regulated industries. Obviously, federal government employees would be covered under that. They're only about 10% of all the workers in the country, so we're going to need some help in lobbying our friends in the provinces—and I hope you will help us do that—to encourage them and to make sure that each province adopts companion legislation to make sure that the other 90% of the people who work in this country can avail themselves of the same benefits.
Of course, the second part of the bill makes changes to the employment insurance system to allow for these compassionate benefits to be claimed in a number of different areas. That is obviously exclusively within the federal realm of jurisdiction.
I think it is important to make that clarification, because I'm not quite sure that all of the witnesses have completely understood what the bill does—that we're dealing with those two different areas, and that certainly on the labour code side, we can only do what we can do within the federal jurisdiction.
I'm sure you would agree that both of these changes are a positive step forward. We can certainly get into the discussion about what number of weeks should be allowed to be claimed for EI benefits, and I'm sure the committee will continue to have some discussions around that. I very much appreciate the advice you've provided, and that of the CEO of Ronald McDonald House, which gave us an idea of the average window of stay within their facilities. I think that may give the committee something to give some consideration to.
Beyond what has been proposed in those two areas, and based on your individual experiences and the other programs that are available out there to support medical costs and to support compassionate leave for families and caregivers, as well as some of the tax credits, etc., that we've actually brought in as a government, are there other areas?
Are there any other areas of advice that you would have for us as we look at these changes and what we can do to make sure we're getting it as right as possible the first time in making this a new benefit? Do you have any specific advice beyond what we're doing in this bill that might be good food for thought for us as committee members?
As an Individual
The drugs are incredibly expensive. Sabrina gets Neupogen injections. Ten injections cost $2,000. It stimulates bone marrow. She has to have it. I am lucky I have insurance that covers 80% of the cost. I still have to pay out $400, which comes to $800 a month. It certainly adds up when your salary has dropped as well.
I would like the government to cover all medical expenses for children, to help us out. This drug is medically necessary. If Sabrina doesn't have these injections, she will end up in the hospital and die. It's a shame that we, the parents, are the ones who have to bear these costs. I am not sure if you understand what I mean. The amount could be capped. When you have to pay $2,000 for 10 injections and your child is sick for a year, it adds up quickly, not to mention all the other expenses. Sabrina is on Lupron, which costs $300 a month, per injection. The oncologist prescribes many other drugs that we have to pay for ourselves. Our children's health and survival are at stake. We would certainly appreciate some help.
Liberal
The Vice-Chair Liberal Rodger Cuzner
That's five minutes, so thank you very much.
I'm going to yield my time to the NDP. Monsieur Rousseau and Mr. Sullivan are going to spend that time.
Conservative
Devinder Shory Conservative Calgary Northeast, AB
You are the chair. Are you still yielding your time?