Human Resources Committee on Nov. 1st, 2018

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

Thank you.

I, too, thank you for the bravery, the courage and the compassion you are showing, sharing your stories and helping others. It's one of the more inspiring parts of human nature, the ability to help others even when you need the help yourself, so thank you.

While you were talking and we were hearing where some of the ideas are leading us with your suggestions and wise advice, the question that came to my mind was, what is the scale of this dynamic across the country in terms of how many people we're talking about who require the services you're trying to get established? What is the frequency of this event?

[Cheryl Salter-Roberts]

I can share our statistics from Alberta.

Almost 16,000 babies die each year that are documented as miscarriages. When we say “documented”, we know there are actually more. One in four pregnancies will end in a miscarriage in Alberta. We know it's higher than that, because many women do not go to their physician and say, “I think I've had a miscarriage. Can you do a test?” They just know they were pregnant. They did the test at home, and within weeks they lost that baby. There are many undocumented losses.

We also know there are around 400 stillbirths each year. I don't have the statistics for SIDS. I know it is high. I don't have the statistics for SUDC. It's coming up as a higher one as well.

In communities across Alberta, it is a growing trend. Part of it we're seeing is that many families are waiting to have their babies and the parents might be a little older, so there are more opportunities for testing being done. Sometimes those end in medical terminations with babies that maybe aren't as viable or the mother's health is at risk. We're seeing a big increase in medical terminations as well. That's pushing numbers up.

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

Then the miscarriages are obviously pre-delivery in the way that's calculated.

[Cheryl Salter-Roberts]

Yes, miscarriages are from conception to the first 20 weeks of gestation, and then a stillbirth is considered from 20 weeks to full term, or just beyond the due date.

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

You divided it into three categories. It was miscarriages—

[Cheryl Salter-Roberts]

Stillbirths.

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

—stillbirths and then—

[Cheryl Salter-Roberts]

Sudden infant death and SUDC.

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

You said you don't have firm statistics for one of them.

[Cheryl Salter-Roberts]

I don't have the number for SIDS. I do apologize.

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

That's fair enough. It's okay.

[Arnold Viersen, Peace River—Westlock, CPC]

Adam, the fellow on the video conference has them.

[Philippe Panneton]

I looked them up actually on the way here. For 2016, StatsCan says that SIDS or infant death is 1.2 per 1,000 live births in Canada. What affects us, as our son was almost two years of age when he passed away, is 4.9 deaths per 1,000 live births for children under the age of five in 2016.

We don't have statistics for SUDC at all in Canada, because it's not tracked unanimously through provinces. It's not a recognized cause of death. It's an absence of a diagnosis.

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

Okay, and is miscarriage part of your research as well in terms of the rate?

[Philippe Panneton]

No. This is really children who were carried to term, and no stillbirths.

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

I'm sorry to be so statistical, but as the ideas move forward, understanding the scale of the model we're working with helps, because as you know, EI is a rate-supported program. When you make changes, the criticism is often that it's a tax on small business, and so on. However, we need to figure out how to model it, so thank you very much.

[The Chair, Liberal, Bryan May]

Mr. Locher, you had something to add as well.

[Jens Locher]

Yes. I want to give you the statistics from the federal level. I actually had to go all the way back to the year 2005, because when I looked at the StatsCan website, I think they stopped recording miscarriages at some stage, so there's even no data available federally anymore on miscarriages.

The only dataset that actually gives you the full scope of all these situations was in 2005, where at the time I looked it up, there were 447,485 total pregnancies. There was a category in the StatsCan data that was labelled as miscarriages, but it was very low, with 6,285 occurrences; however, it had a star to it that said it was only the ones that got recorded by StatsCan. Therefore, as previously indicated, I think there's a big gap in terms of things not getting recorded.

At that time, they divided the number of stillbirths as early fetal loss, which starts at 20 weeks, and then late fetal loss, which starts at 27 weeks. The numbers were 1,197 for early fetal loss, plus another 1,012 for late fetal loss. That's the stillbirth category.

Then, in terms of the neonatal deaths, which is up to the first year of life....

Actually, they had another group, from one to 14 years of age, and it was 791 children in 2005 who had died. Out of those, there were 66 were suicides, 233 accidents, and 116 neoplasms. There was another category for SIDS cases, sudden infant death syndrome, and in 2005 the number was 112.

[The Chair, Liberal, Bryan May]

Is it possible for you to send us that info?

[Jens Locher]

Yes, of course.

[The Chair, Liberal, Bryan May]

Thank you.

MP Richards, you're next, please.

[Blake Richards]

I'll continue on that same line. Obviously, the challenge here is that the numbers are difficult. We all understand that, in many cases, people end up being able to qualify for a sick benefit or, if you were able to qualify, there's still maternity leave that's accessible for some people.

There are people who fall through the cracks of those things and we're trying to make sure that everybody has that access, but the numbers aren't as big as they might sound because there are people who are able to qualify for other benefits.

The problem—and we're hearing it from you today and we've heard it from others—is that you have to go and fight with the bureaucracy and fight with the government to get it. It's not that anyone is trying to deny it, it's just that nobody understands how to deal with it. I'd like all of you to speak to that part of it because that's the thing I'm hearing quite frequently from people. It's this thinking that if it could just be automatic, then people wouldn't have to struggle and have this battle to try and make this work, to try and fit this square peg into a round hole. That seems to be the biggest challenge. If any of you would like to speak to that specifically, like the idea of something that is actually specific to your circumstance of bereavement—and it also would be automatic so that....

I've heard stories from people. I think there was one family from the Ottawa area here who told their story 17 different times to government agents in order to get their benefits. They were able to get them, but they told their story 17 times. I would think that if we could eliminate that, it would make a big difference. Also, there needs to be recognition that this is something that is significant and that we need to address, rather than trying to find ways to fit it into some other category.

I don't know that we would end up finding that there would be a significant number of new benefits paid out, but I think people would feel recognized. I think we would lessen the burden on people to try and deal with the bureaucracy.

I wanted to hear some comments on that, if any of you have them. Is there anyone who wants to jump in?

Cheryl.

[Cheryl Salter-Roberts]

One of the facilitators in my program, her baby died at 21 weeks and she had to have a labour induction to bring the baby out. She received full benefits for the entire year, for a 21-week baby. In my same program, I've had other parents who have gone beyond 40 weeks and then their baby has died or the baby has died within days of birth, but they have been denied benefits altogether. Their baby died; therefore they don't qualify.

There are great inconsistencies about who gets benefits and who doesn't, but it really comes down to who on that day was making a decision and who they spoke with. The mother, who got her full benefits, basically had to go into the office, fill out forms and it was done. The mothers who have had their benefits denied and were full term have had to do the hoops and have told their stories 17 times. That's a piece that really needs to be changed and again, made simple.

[Paula Harmon]

There's a family in the Annapolis Valley in Nova Scotia. The mother died in childbirth and the baby died nine days later. The father is self-employed with a toddler, but he's not able to access anything because he's self-employed. He has to go back to work and his work is dealing with.... He has a day care, so he goes back to work and is dealing with children immediately after the death of his child and his wife.

[Jessica Weatherbee]

I think having a separate bereavement benefit would be beneficial for situations such as mine. My husband was forced to go back to work after a week. If there were individual benefits for both parents.... Our hands were tied. They wouldn't sign the forms. We went to see a physician twice in a week and then we just didn't have any more fight left in us. If there was a separate benefit, that would have never happened. I ended up going back to work nine weeks postpartum because he wasn't at home with me.

After you lose a baby, people don't rush to your house to console you. People stay away. You're there by yourself.