Human Resources Committee on Oct. 25th, 2012

[The Vice-Chair, Liberal, Rodger Cuzner]

So you see a benefit in extending it to those who may lose a child through illness?

[Cathy Loblaw]

I certainly see anything that gives families more support when they're going through what is arguably the most difficult time in a family's life as being a very positive and important thing for families, absolutely.

[The Vice-Chair, Liberal, Rodger Cuzner]

That's perfect. It was five minutes.

We really appreciate your being here today and taking the time to share with us your insights and opinions.

We are going to suspend now and prepare for the next round of witnesses.

Thank you.

[The Vice-Chair, Liberal, Rodger Cuzner]

As we come back to order and just before we begin, I want to recognize that we have some guests with us in the gallery today from the Assembly of First Nations, the ASETS group. There are 60 such groups across the country. They are assembled here in Ottawa today, the Aboriginal Skills and Employment Training Strategy group. Bryan Hendry, senior policy adviser, is here with some members of the group.

We want to welcome you here today. They presented a brief to the committee on the skills gap, and we very much appreciate that. I believe you have some thumb drives that you're going to support the committee with as well. We'll look forward to seeing them.

Thank you very much for being here today.

We will begin our second round. We have Edwina Eddy, Annie Guérin, and Nathalie Roy.

We will begin with Madame Roy. Welcome, and thank you for being here today.

[Nathalie Roy, As an Individual]

Good morning. My name is Nathalie Roy. My 16-year-old daughter, Sabrina, has Hodgkin's disease. She has stage 4B cancer, the last stage. She was diagnosed in May of this year, so not that long ago. She has a younger sister who is 14. This is a trying time for our family. As a teenager, Sabrina has dealt with all kinds of stress and self-esteem issues.

She really needs her parents now, and we are always there. I have been on leave from my nursing job since May, so I can be home with Sabrina. I go with her to her chemotherapy treatments, as a result of which, she has been repeatedly hospitalized. She finished chemotherapy in August but is now undergoing daily radiation treatments, which will last eight weeks. She also has oncology appointments.

The passage of Bill C-44 is essential from a support and care perspective. Sabrina is outraged, fed up. She's a teenager. This week, she just wanted to throw in the towel. We are close. It is vital that parents be near their child. In our case, we were able to spot Sabrina's distress quickly, and then give her encouragement and explain how important it was that she not give up on treatment.

Forgive me, but this is very difficult. I had prepared a statement, but now I'm just speaking from the heart.

Sabrina often says to me, “Thank goodness you're here, mom. Otherwise, what would I do?” In the oncology ward, you see children who are by themselves all the time. All of you are probably mothers or fathers. All of you have obligations, a house, a car, a family to feed and so on. So you have to work. It pains me to see kids there by themselves because their parents have obligations. If this bill is passed, it will likely mean that kids no longer have to go through the experience alone. It's not fair for a child to have to do this on their own. Even an adult has a tough time coping; just imagine what it's like for a child. As we face this ordeal with Sabrina, we feel a lot of sadness, guilt and anxiety, but I have the satisfaction of being there with my daughter. We go with her to all of her appointments. She isn't alone.

The passage of this bill would be a boon for children. I am speaking for the children, but also for their mothers and fathers. I lost a little girl, so I know what it is to grieve, and I know how impossible it is to go back to work under those circumstances. Everyone must go through the grieving process. If they go back to work too soon, they will most certainly fall into a depression. We are human beings. We need to face adversity with family around us; we need to take a step back to mourn and say goodbye. People who don't have that option suffer untold anguish. They become depressed, and sometimes they even try to commit suicide. In some cases, there is no telling how far it will go.

I had a lot I wanted to say today, but there is one thing I want to say above all else: Please pass this bill. You must do so for the sake of our children, your children and your grandchildren. We never know what life will throw at us. I would never have thought that cancer would befall my daughter.

Thank you very much.

[The Vice-Chair, Liberal, Rodger Cuzner]

Thank you very much, Ms. Roy. I can only imagine how difficult it was, but we appreciate your courage and strength in sharing that with us.

Madame Guérin is next.

[Annie Guérin, As an Individual]

Hello. My name is Annie Guérin, and I am the mother of a child with a brain tumour.

I'd like to thank you for this opportunity to speak before you today.

Before I begin, I should state that although I am a federal civil servant, my statements here today are my own and do not reflect those of my employer.

My son was but five years old when he was first diagnosed with his tumour. As you can imagine, my husband and I were shocked and scared and worried about our son. His entire life—and ours—was about to change.

He immediately underwent 16-hour brain surgery to remove the majority of the tumour. Nothing in my life has ever scared me as much as those hours waiting in the waiting room, waiting for news that he was still alive and doing well. That news could not arrive soon enough.

I was so relieved when I saw him awake, but groggy. My heart fell again when he was unable to remember who I was. Thankfully, once the swelling had gone down, his full memory came back. However, because of complications from the surgery, he had to be hospitalized for about four weeks. I stayed at the hospital with him to oversee his care.

Everything had happened in such a rush that we didn't have time to analyze how this would affect our son, our other two children, our marriage, or our finances. Our only concern was getting our sweet little boy back safe and healthy.

Now, I had just returned from maternity leave and had begun a new job. I had no accumulated leave. My employer was kind enough, however, to advance me some time off, but it wasn't enough to cover what I needed. I had to take time off without pay.

Even once my son was discharged and back at home and his chemotherapy treatments had begun, we still needed to take more time off for subsequent appointments with the myriad of doctors and to take care of him when his treatments got to be too much and his system was too weak .

My husband was unable to get any time off from his job, so he had to juggle his demands at work, our other two children, and relieving me at the hospital when it was needed. Unfortunately, the distractions became too much, which caused his performance at work to suffer. He was let go not too long after.

When a child is diagnosed, parents want to do everything in their power to make it better. Knowing that there wasn't much we could do medically, we did our best to provide for the remainder of his needs, but in losing his job, my husband was no longer feeling that he was providing for our family. The stresses on our family were now even greater.

By this time our son's chemotherapy was well under way. The protocol he was on required many at-home drugs, which cost about $600 per month, some of which were not covered by my insurance plan. We were now deep in debt, my husband was looking for work, and our electricity had been cut off. I had to return to work in order to support our family financially, to cover the medical costs, and to get my family back on track.

I realized I needed help to get us through. I began looking into what programs were available and was very surprised to find how few there actually were within the government. Luckily, we had the support of family and friends and charities to help us through our dark times, but that is not necessarily the case for many families.

That's why we need this bill.

Had this option been available to us at the time, my husband could have applied for benefits. We would have had the option to stay at home and take care of our son during his care. We might not have gotten into so much debt. The stresses on our family would not have been as great.

Unfortunately, a year after my son's treatment ended, his tumour had regained strength, and he had to go back on chemotherapy once again. The protocol was different this time; there weren't as many at-home drugs, but the physical effects were still the same. The cycle of missing work, the debts, the stress, and the uncertainty were beginning all over again, not to mention the physical and mental effects on my son and the rest of the family.

I have reviewed this bill and am happy to see that the benefits can be split between the parents. I do have a few recommendations, however.

My strongest one would be that the duration of the benefits be extended from 37 weeks to 52 weeks. Most cancer protocols are between 48 and 60 weeks in duration, at least for the families with whom I have come into contact.

As most of you may know, children's systems are weaker the longer they are on chemotherapy, and so the chances of their getting sicker increase the longer they are on the protocol.

Also, would it be possible to split the benefits throughout the year in order to give the parents the option to take a few weeks upon diagnosis, and then as needed throughout the treatment? You never know when your child is going to get sick, when suddenly they are neutropenic and are going to need to be hospitalized for another three or four weeks. This is not something you can plan for upon initial diagnosis. I would hate to take all the benefits at the early stage and not have any available when they were truly needed.

Also, is there a limit to the number of times you can make a claim? In the event of a relapse, will parents be penalized because they had already made a claim the previous year? That needs to be more clearly identified.

I also believe that the age limit should be increased to 21. New diagnoses among teenagers are on the rise, and I would hate benefits be cut off once a child turns 18.

In the case of Sabrina, I know that she is a teenager, and anything that stopped Nathalie's ability to take care of her daughter because her daughter had lived long enough to turn 18 I would be against.

I would also recommend that the claims themselves be easy to complete. There are so many forms that need to be completed and signed by parents and by doctors and by psychologists and you name it. We don't need another complicated process; we just want something quick and simple and easy.

If you truly want to help parents in need, every measure should be taken to make this process easy and flexible. I strongly believe that this bill should go through, with the amendments of prolonging the benefits, as I mentioned. It is my deepest wish that no one will ever have to use these benefits; however, the unfortunate reality is that it is gravely needed to help our families in need and to help them to stay strong.

In closing, I just wanted to mention that my son is now doing fine and things have somewhat gotten back to normal. I've become much more involved with the charities that have helped us, and my goal now is to help new families that have received the diagnosis.

I'd like to thank this government for finally bringing this bill forward. I would also like to thank you again for inviting me to speak before you today, and I welcome any questions you may have.

[The Vice-Chair, Liberal, Rodger Cuzner]

Thank you very much, Ms. Guérin.

It's wonderful that your son is back on his feet and healthy. We appreciate your suggestions. We've heard several before. Certainly the flexibility aspect of the legislation has been one that we've heard, so we'll take that into consideration, I'm sure, in our deliberations.

Go ahead, Mrs. Eddy, please.

[Edwina Eddy, As an Individual]

I have entitled this “My Forty Years' Journey in 10 Minutes”, so I hope you will bear with me. I have tried to limit it.

I am the mother of five children, the wife of Reverend Keith Eddy, and the founder and first CEO of Candlelighters Childhood Cancer Foundation Canada. “It's better to light one candle than curse the darkness” was our motto.

My son Bryan was diagnosed with childhood cancer in 1972. For us, the trip to the hospital was 55 miles coming and going. The disruption of family life caused considerable distress, and you have heard that from the two previous speakers.

Information for families living with childhood cancer was not available at that time. That's why a group of us decided to form a support group at our hospital. We brought in medical specialists, social workers, etc., to give us an idea of how to handle our problem.

It was during this time that I was contacted by Candlelighters Childhood Cancer Foundation in the U.S. I was asked to come to Washington, DC, and sit on its board of directors. They were working on the same issues as we were. They asked me to be their Canadian representative on the board.

Our son went into remission and encouraged me to continue with the work. We joined a group called Canadians for Health Research. He was there at the beginning of the issue Parliament was discussing in May of 1976, capital punishment. Canadians for Health Research asked him to join them to help resolve the issue of medical research reduction.

You have a photograph of him. He made his own picket sign, and with 400 others he marched on Parliament. The picket sign read, “I have leukemia. Without research, I am on death row”. He died three months later.

In 1984....

You can see that it's still here.

In 1984 Stephen Fonyo finished the Terry Fox run. It was called “journey for lives”. When he finished that run, the government gave the Canadian Cancer Society $1 million for childhood cancer projects. It invested $500,000 of that into research, but it didn't know what to do with the other half, so it just invested it.

Someone found me and asked if I would like to do something in the childhood cancer area. They gave me the interest from the money to start the childhood cancer foundation. When I retired in the early 1990s, we had found about 51 support groups starting across Canada. I tried to help them start. In 1987 we were able to incorporate the foundation.

We've done a lot of work helping families. You have before you, I hope, the foundation's work up until now. I would like to tell some people about that and about what we wanted to accomplish.

We have programs for families, for teachers, and for professionals. We have teenagers who network with other teenagers who have similar problems.

One of the last things I was able to do was to start a survivor's scholarship. I'm happy to say that we had 123 scholarship applications this year, so patients are surviving, and we are very pleased with that, of course.

We have an 82% survival rate; I hate to say this, but 70% of those children are having problems because of their protocols. Whether they be cognitive or other physical problems, they do develop, and these ladies are proof of that. This doesn't just happen for a few weeks. We've needed to have support beyond that. One of the things we could not do—and we've never taken a dime of government money until now—was to provide the necessary arrangement for compassionate leave. This, of course, is your job. We are more than grateful that you have taken this on.

I hope I'm not running over time.

I'd like to emphasis that over the years I have received letters about this exact problem that would practically fill this room. The first tsunami is the diagnosis. The second is wondering how we are going to make it financially. I have watched many families go on welfare or lose a partner because the partner couldn't cope anymore with the problem. You need to consider this.

We have a benevolent fund for those who can't afford to bury a child. We don't give them the entire amount, of course, but we have been working hard on every aspect of childhood cancer to help families, and this bill is so important.

Mrs. Sharon Ruth has worked with her MP, Gordon Brown. Gordon O'Connor was my helper to get things started here. On August 7 in Vancouver the Prime Minister announced—and I was there, happily—that the changes to the compassionate leave section of EI were taking place.

It's really necessary. I would say that up to 52 weeks, particularly, gives families an opportunity to ask how they are going to adjust to this situation. They haven't had that opportunity before; they just lost half their income.

As I've said before, some of those families have gone down to absolutely nothing. They need this assistance, psychologically as well as financially, to help them through. I know aboriginals in the north—I was writing to them—had a terrible time trying to get down to Winnipeg to bring their child. They couldn't do it. Their partners would leave, and their sons and other people would take up alcohol to hide their problems. This is nationwide.

We are pleased that you are finally considering this bill and we look forward to hearing that you have listened and will take these adjustments into consideration.

Thank you. I hope I haven't gone over time.

[The Vice-Chair, Liberal, Rodger Cuzner]

It was just perfect.

Through the course of these hearings and any other hearings, the various committees always have access to some very bright people who come and share facts and figures because it's their job. To have witnesses share their story because it's their life makes a difference. Again, it's powerful and compelling. Obviously, it's emotional for you to be here today, and we appreciate your testimony.

We'll start the first round with Mr. Cleary. You have five minutes.

[Ryan Cleary, NDP, St. John's South—Mount Pearl, NL]

Actually, we're going to split our time between Lysane and Jean for the first round.

[The Vice-Chair, Liberal, Rodger Cuzner]

Okay.

Go ahead, Madame Blanchette-Lamothe.

[Lysane Blanchette-Lamothe, NDP, Pierrefonds—Dollard, QC]

Thank you all for being here.

Right off the bat, I would like to make one thing clear, Ms. Roy. The debate today is not about whether we should pass a bill like this one. We all agree that those who are there for a sick child or those whose child has gone missing need support. The discussion today centres on what we can do to ensure the bill is implemented in the best way possible, not on whether it should be passed. Our goal is to improve the bill as much as possible.

Ms. Guérin provided suggestions on how to improve this bill. Ms. Eddy and Ms. Roy, I would like to know what you think of Ms. Guérin's suggestions.

Ms. Guérin, could you sum up your suggestions in a few sentences?

Afterwards, Ms. Eddy and Ms. Roy, you can comment on Ms. Guérin's suggestions.

[Annie Guérin]

The first recommendation is to extend the minimum period from 37 to 52 weeks. The second is to raise the age limit from 18 to 21. And the last recommendation is to build flexibility into the benefits so you can share or stop them as needed during that period, depending on the child's needs in each case.

[Nathalie Roy]

I think it's a good idea to extend the benefit period to 52 weeks, given the time required for diagnosis, surgery, radiation treatment and chemotherapy. It is often necessary to stop chemotherapy because the child comes down with a fever, for example, and that means a longer treatment period. So I think it would be very helpful to extend the benefit period to 52 weeks.

It would also be great if you could split the weeks of leave with your spouse. For instance, if a couple could split the leave evenly between them, similar to how it works for parental leave when someone has a baby, I think that would be useful. A couple goes through the ordeal together. It would be nice if mom and dad could each benefit and share the leave.

So I support Ms. Guérin's recommendations.

[Edwina Eddy]

I too support these suggestions. Have you considered the fact that in our society we also have one-parent families? What does this parent do? If you have the split, I agree with the 52 weeks. We only just get started in our journey with living with cancer in those 52 weeks. It would certainly help to keep families together if you could consider that.

[Lysane Blanchette-Lamothe, NDP, Pierrefonds—Dollard, QC]

Ms. Eddy, you talked a lot about leave for caregivers, but the bill targets only parents with children under 18. Do you think that definition is too narrow? Could you briefly tell us whether you would expand the scope of the bill so that more people could benefit from the leave and why?

[Edwina Eddy]

When you say scope, what do you mean?

[Lysane Blanchette-Lamothe, NDP, Pierrefonds—Dollard, QC]

You mentioned the importance of granting caregivers leave. I am wondering whether caregivers, in your eyes, are limited to parents of children under 18. If not, do you have any suggestions for widening that definition to enable others to receive this support as well?

[Edwina Eddy]

Do you mean to other people?

[Lysane Blanchette-Lamothe, NDP, Pierrefonds—Dollard, QC]

I mean people other than parents of children less than 18 years old.

[Edwina Eddy]

Yes, if they were caregivers, certainly. We'll take what you'll give us.

[Lysane Blanchette-Lamothe, NDP, Pierrefonds—Dollard, QC]

Okay, thank you.

I will now hand the floor over to my colleague.

[Jean Rousseau, NDP, Compton—Stanstead, QC]

I have a brief question.

Thank you all for sharing your stories with us.

One of the biggest problems I have with this bill is that it gives parents up to 104 weeks of unpaid leave if their child has died, but only 52 weeks if their child has gone missing. In some cases in Quebec, children have been missing for 10 or 12 years, such as in the Surprenant and Riendeau disappearances.

I would like to hear your thoughts on that, please.

[Annie Guérin]

I don't know if we can really compare the situation of someone who has gone missing or has been murdered or is a victim of crime with that of someone who has a kind of critical illness. First of all, your child is with you while you're going through the illness. However, I don't want to say one is more traumatic than the other. Both events are very traumatic for the family.

From my interpretation of the bill, why those families would get 104 weeks, or whatever the amount is, as opposed to the 37 that's been proposed for us kind of makes it look as if their traumatic experiences are three times worse than ours. I know that's not necessarily the intent or the case; however, illnesses can drag on for years. I've been going through this for at least five years now.

I can't really speak regarding the families that are missing or murdered because I haven't been through that situation. Obviously, I want to give them as much time and benefits as needed, but if they could be more on an equal basis, then I think that would be a benefit.