Human Resources Committee on Nov. 1st, 2018

[Jens Locher]

I have to say that my work was very supportive, so I was very fortunate in that sense.

We actually discovered—and this is one thing that hasn't been mentioned very often—that so many people are affected.... Actually, at work, people come forward and tell you things that you never knew had happened. There's a stigma or challenge about talking about these children who have died because it's not a conversation starter. After my son died—in our office, there are 48 people or so—I learned there were six or seven families who had lost children in various circumstances. I worked with these people for years and I didn't know these things. Then people came forward and told me these stories.

My employer was very supportive. They had a bereavement counsellor come because the office was affected by it. Those kinds of things are quite extraordinary but not everybody is that fortunate.

I hear the horror stories from people in our support network, where it's the opposite. Some have a period of three days of bereavement and then they're back and there is nothing else. I think there's a whole spectrum—what I've experienced as compared to what I hear from other people.

How the government could help with that is a really difficult question to answer. It is related to this awareness about how many people are affected and what grief really does to someone and how they can be supported.

As was previously indicated, having this ability to take the time and the flexibility of time is important. As Cheryl said, I don't think it means everybody has to take the time. I was actually one of the people who found it useful and helpful in my grief to go back to work. I didn't stay off too long, even though my employer would have allowed me to stay off longer. For example, my wife couldn't go back to work. She couldn't concentrate and it was impossible for her to work. It was good for her to have maternity leave.

I think there needs to be flexibility. For the people who do feel that it's helpful for them not to go back to work immediately, it would be wonderful if they had the possibility to have this amount of time and that it can be shared between the partners, so that the mother doesn't only get the time, but that there's time for the father as well.

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

Thank you very much.

[The Chair, Liberal, Bryan May]

Thank you.

MP Sansoucy, the floor is yours, please.

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

Thank you, Mr. Chair.

I would like to thank everyone who is appearing before us. Your testimony is really important for our study, the topic of which was suggested to us by our colleague.

Mr. Pelletier, I want to tell you that I have heard several people talk about how important your organization has been in their lives. I think that our community is fortunate to have had 25 years of support from an organization like Les amis du crépuscule, which provides assistance to bereaved people.

Since the beginning of our study, we have been hearing about benefits for parents. We heard more about that this morning. A number of organizations have also told us that they relied only on volunteers and that they had no funding. You said it yourself—the department of health and social services is faced with many health-related costs, in addition to supporting community organizations. In your case, barely 40% of your funding comes from the provincial government.

I would also like to congratulate your team and your board of directors who, despite your organization's difficult financial situation, have decided to set up a new program for infant loss, using money you have obtained with difficulty.

I know that, for other areas of activity, such as women's organizations, the federal government has subsidy programs. Since bereavement can affect anyone, regardless of the province of residence, do you think it would be important, as part of our study, to issue a recommendation to support organizations like yours? A witness told us that he came from a region with no resources. Regardless of where we live, it would be good to have someone to turn to for support in the difficult moments of bereavement, especially involving a child.

[Alain Pelletier]

We often hear comments like that one.

People who live 100 kilometres away from our offices come to us for those services, as they are not available everywhere. They are very rare. We are committed to that mission, and we continue to carry it out despite the lack of funding.

The testimony we hear from people who use our services is always very eloquent. All those people, without exception, tell us they feel better after receiving the support, which is provided over approximately 10 weeks. They live in the present better and feel much more prepared to deal with the future. The grief remains and will never go away, but those people are now able to deal with it better.

We will proceed in the same way for infant loss because we think that loss is just as important as the others. We will do everything possible for those people to be better able to cope with the absence of that small being. Although the child may have only been in their life for a short time, those are important moments. We will ensure to continue to fulfill our mission in that area.

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

At our last meeting, Chantal Verdon, a researcher at the Université du Québec en Outaouais, told us that it would be helpful if the federal government launched a broad public awareness campaign on the issue, similar to the one on acceptance of mental health in our society.

A number of witnesses have told us that bereavement was not sufficiently known or recognized. In addition, as you pointed out, some people feel that infant loss is not as serious as other losses.

Do you think it would be a good idea to have a public awareness campaign on what bereavement is and its consequences in order to educate people about that reality in our lives?

[Alain Pelletier]

Absolutely. Bereavement is not something that begins one day and ends a year later. Everyone experiences loss in their own way, depending on what they feel. Earlier, Mr. Long was saying that the most difficult moment for him happened six months after his father's death. Everyone experiences those moments in a very personal way.

A Canada-wide public awareness campaign would be useful because everyone will face the loss of a loved one eventually. So everyone should be made aware of the fact that this is a very difficult experience. The campaign should provide all those who are experiencing a loss with tools to deal with it.

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

I used to be a director of a community organization for troubled youth, and nothing hurt me more than hearing a parent say that they would have liked to know about the organization when it would have been useful.

Your limited resources do not allow you to promote your services. A number of people we have met with have told us they did not know where to turn.

Do you think it would be useful for your services to be known to Service Canada or hospitals, for example? What could be done to ensure that the existing resources are known, so that organizations can refer to them people who need those services?

[Alain Pelletier]

You had the answer earlier when you talked about a public awareness campaign. That campaign would introduce the organizations that provide those services.

This morning, I have heard a number of people who did a lot to help people in their area. It is important for those individuals to be known and recognized by people who will go through the same issues later without knowing where to turn. It is important to make it known that those organizations and that assistance exist, and people have to know where to find those resources.

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

Thank you very much.

[The Chair, Liberal, Bryan May]

Thank you very much.

Next is MP Ruimy, please.

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

Thank you. I'll be sharing my time with Ms. Romanado.

Thank you, everybody, for being here today. It's not easy to have a bunch of politicians ask you probing questions. Please understand that to try to get to where we all want to go, we do have to ask some questions, because it's hard to understand.

We're a confederation that's made up of provinces and Jurisdictions pose a challenge as well. When we look at Service Canada, they're not connected, necessarily, with the different provinces.

What's the path forward? We've been hearing about the organizations that are sprouting up mostly from people who have experienced this. That's where I want to focus my couple of minutes, on the organizations.

Are you receiving any kind of funding whatsoever, be it through the province...not through the federal government.... Okay.

Do you have volunteers?

I want to be able to get it on record instead of shaking heads.

There are two questions I have. Are you getting any kind of funding? Are your volunteers getting any kind of training?

Why don't we start with Ms. Roberts.

[Cheryl Salter-Roberts]

Within our organization we can occasionally get a grant, but usually it's a local grant, from CIBC, TD and those kinds of institutions that can help out. For the most part, families raise funds to help us. At our walk, they ask their families to support us by making a donation in their babies' names. That's where our funds come from.

In terms of volunteers, in my program in particular, I'm very focused on making sure that my facilitators and volunteers are screened, well trained and well supported, because the work involved is very critical and we don't want to make mistakes. They are coming from a peer support background. They themselves have lost a baby, so they get it. They understand, and then they could provide that, with training and support.

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

Thank you.

Ms. Harmon.

[Paula Harmon]

We only started a little over a year ago, so funding is interesting. We actually have no money. A lot of grants aren't geared toward bereavement.

Having to basically play the system to try to make what you're doing fit the grants is tricky. We're actually doing a training session on Sunday at the IWK in Halifax, with training material provided by the Pregnancy and Infant Loss Network here in Ontario.

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

Thank you very much.

Ms. Romanado, you have my time.

[Sherry Romanado, Longueuil—Charles-LeMoyne, Lib.]

Thank you very much.

I am really honoured to be here today.

Wendy and Philippe are from my riding, and I was delighted to help them in their quest to raise awareness of sudden unexplained death of children.

Just in listening to the testimony this morning, I realized that 25 years ago, my husband and I lost our first child, so I know your pain and grief don't have a time limit.

I heard a lot about holistic approaches to loss—it's the province, it's local organizations, community, family, the federal government.

What can we be doing? We're talking about two different things in terms of what benefits or supports are available and the delivery of those. When you're suffering a loss, the last thing you want to do is jump through hoops. We heard that loud and clear. What could we be doing as members of Parliament?

We often get contacted by organizations or citizens, saying that they're having trouble navigating the system, that they need this or that, a passport, for example. What could we be doing to help in real time? These are small tweaks we can make so that we know that your organizations exist, and when other families come to us and say they're suffering, we can be that one-stop shop, that guichet unique, for families, and say, “Listen, we know you're suffering. Let us help you. We know there's an organization that can help there.”

We can help you make sure that the CRA is aware of the death of your child, and we can make sure those benefits...people are notified. We can make sure that our provincial counterparts are aware.

What could we be doing to help you and help families? There are things we can be doing in real time that can help. I think just having that holistic approach, that one-stop shop could help, so that you don't have to keep telling the story over and over.

What would you recommend to us? That is an open question.

[Paula Harmon]

I would like to answer that. To start with, I have a few points.

The first would be to have comprehensive information on a website about what steps are to be taken after a loss—a database of help information. Michelle LaFontaine mentioned release forms to trigger certain things. Sands in the U.K., the stillbirth and neonatal death charity, has a series of very useful booklets, not just a sheet of paper but comprehensive books with lots of good information. Two of them are dedicated to employers and employees and going back to work. One approach would be to have booklets like that to advise the workplace on how to treat the returning employee and to help employees who are dealing with the returning employee.

Second, allow flex time. If you hurt your back, you're allowed light duties. If you're in a job that requires more concentration, you're not going to be able to do that if you've lost a baby. It would be flexible to the individual.

Third, include ongoing, grief-specific resources through employee assistance programs.

Fourth, have specific education and training for Service Canada employees. This should actually apply to health care employees as well, because in many situations they're not equipped to deal with sudden death. There are no accreditation programs for doctors and health care workers to take. Our doctor, when we went back for the autopsy report, said she felt like she was throwing us to the wolves when we left the hospital that night. If that's how that doctor felt with us, how is she dealing with it?

It would be those and even a grace period for submitting medical forms. It might also include a turnover of maternity or paternity benefits to ease into the grief period.

[The Chair, Liberal, Bryan May]

Thank you.

Next is MP Hogg, please.

[Gordie Hogg, South Surrey—White Rock, Lib.]

Thank you again to Blake for bringing the motion forward.

As a society, we want to see ourselves as compassionate, caring and able to provide these supports.

Through all of the testimony we have heard, there have been a lot of common themes, common issues that have evolved through this. It's a bit reminiscent of our cultural shifts back in—I think it was 1969 that Elisabeth Kubler-Ross wrote On Death and Dying, a book that brought a better grasp and understanding to western societies with respect to how to manage that. I think this is a new and important iteration of the kind of involvement that the hospice society movement had. It's clearly been able to continue with the notion that understanding, commitment and caring are so important in this.

Mrs. Harmon, you made reference to Sands in the United Kingdom. I'm wondering if any of the witnesses are aware of any jurisdictions in the world that have shifted in this, that have a better method. I think the values are probably consistent, at least across western democracies, as far as what people want to achieve. Do you have any knowledge of any jurisdictions that actually have implemented a system that we might be able to learn from?

[Paula Harmon]

Sands is probably the biggest one. They've been around for 40 years and they also have branches in Australia. In fact, just this spring the U.K. implemented legislation to pay for funerals for all children under the age of—it's either 16 or 18. The U.K. government is paying for all those funerals.

[Gordie Hogg]

Is Sands a non-profit society that was generated out of this?

[Paula Harmon]

Yes, they actually do research and they train doctors and midwives, which is the nursing program over there, very comprehensively on bereavement. Two out of three hospitals that have maternity wards in the U.K. have bereavement suites, which allow for “memory making” and a lot of other important follow-up. There are 103 Sands support groups across the U.K.

[Gordie Hogg]

Do any other witnesses have any other experiences or knowledge with respect to other jurisdictions that we might learn from?

[Jens Locher]

Is it possible to go back to the previous question as well? There was a question of what the Canadian government could do to help people.