Evidence of meeting #121 for Human Resources, Skills and Social Development and the Status of Persons with Disabilities in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was support.
A recording is available from Parliament.
10 a.m.
South Surrey—White Rock, Lib.
It's entirely possible to do that if you can wait one second, and we'll have Ms. Salter-Roberts' response.
10 a.m.
As an Individual
I'm unaware of any jurisdiction or legislation in any of the G8 or G20 countries. There are a number of large organizations like Sands. For us, it was the SUDC Foundation in the U.S. They're across the U.S., in the U.K. and in Australia as well, but it's a private organization, so there's no legislation that I'm aware of apart from what was just mentioned by the previous witness.
10 a.m.
Executive Director, H.E.A.R.T.S. Baby Loss Support Program, BriarPatch Family Life Education Centre
I can speak on our regional bereavement services that are available in the Edmonton area and beyond. Alberta Health Services has helped work with different organizations to create a path for families to make it a little bit easier.
One of the things that happens is, when you lose the baby, there is a package given to you, whether your baby is born at home, in the hospital, in the emergency room or wherever. This package includes one or two pages that have the support groups listed and what is available in terms of benefits, etc., so that families don't have to search for this. They don't have to try to find it online, because it's not always easy to find it online.
Each family is given a memory box, footprints, handprints, clippings of baby's hair and a teddy bear that we donate through our various programs and our walks. There are offers of counselling and there are offers of support after families have gone home. There is some continued support. People still sometimes fall through the cracks, but it's at least a beginning, and they're trying to expand that throughout our province in different regions. I know that is happening.
I'd like to see something Canada-wide where our support groups are connected so that we're all providing the same type of support so that families, from whatever region they live in, can rely on knowing what is available and so that the service employees will also know what is available out there.
I want to touch on the point that giving birth, whether it is at six weeks, 12 weeks, 22 weeks or 42 weeks and beyond is a physical experience. Part of that benefit we're talking about, the time that we're talking about, should include some physical.... I don't know how to explain it, but mother's milk is still produced. Your body doesn't know that your baby has died. There are still all of those physical discomforts, and that should be included as part of that benefit.
10 a.m.
October15.ca - British Columbia Childloss Support Network
Thank you.
I just want to come back to one question earlier: How can the federal government do something for parents? I've actually brought a few examples that I would like to share with you.
I fully reiterate what Paula has said, that you're already hearing from researchers during these witness testimonies. It would be wonderful if there could be a working group or a commission put together to develop material at the federal level along the lines of what Cheryl just mentioned, in terms of saying that this what your grief experience might look like, to just say that what you're going through is normal. A lot of parents feel as though they are going crazy and wonder what is happening to them.
It's just this idea that you can say, “ Look, we know that this is happening. Here is the research on these things. Here's what we know that might help you. Here are some suggestions as to what you can do.” It would be material such as the booklets I'll hold up here.
In B.C., for example, everybody gets these booklets. All people who get a healthy, living child get these very comprehensive booklets that have everything outlined in terms of the next three or four years. It's all researched. It's wonderfully prepared. It's a very good resource.
When your child dies, what we got from the hospital looked like this: self-printed, six pages, double-sided. It actually says on the back “Developed in 1989. Revised in 1999.” It has very limited information, mostly around actually the physical aspects of what your body might go through as a mother after giving birth. There is a half page on the changes in your emotions, and it says in there that if you have further questions you should talk to your nurse, which we did, and they didn't know of any resources, not even the support group that was in their own hospital.
What I would propose is, what stops us from creating a national registry of bereaved parents? It would be an opt-in solution. Because we requested the documents of all our children from the hospital, I got to see all the paperwork that's already going out from the hospital to various organizations. I have one here, the “Notice of a Live Birth or Stillbirth”. It actually has all the information in there that you would need to set up something such as this. It goes to statistics agencies, in this case, a provincial one, the B.C. vital statistics agency, but from there, I think it goes to StatsCan.
That would be the perfect way to say that all this information is going to the federal government and we can basically follow up when this information is submitted to the parents, either with a letter or by email, and ask, “Would you want to be part of network where we can connect you to other families that have experienced something such as this?” You'd just coordinate the peer-to-peer outreach that way.
Once you have that, the next logical step is to extend the registry for providers who are actually providing services to families, to say, “We know that you are in this area and we have these 15 registered providers here.” That could be all the witnesses you have heard today that have organisations, peer-to-peer networks or support groups. They could basically ask to be in that registry and you could just do this matchmaking, which is really the biggest problem for a lot of organizations that I've dealt with in terms of, as I said earlier, this privacy argument.
As an organization, you cannot just go to a hospital and ask for the contact details of everybody who is losing a child so that you can approach them with services that you provide. Usually you try to put an information leaflet together, or you work with some people in the hospital and build relationships, but it's not a foolproof system, because it's people-dependent. If someone is in the hospital at a certain time and a certain nurse is there and knows about that piece of information, it might get to the family, but then another time that person might not be there and it doesn't get there.
I would really advocate for a holistic, central system where these people don't fall through the cracks if someone at that point in time doesn't happen to be in the hospital. If you organize it this way in terms of tapping into the existing processes where notifications are going out to various governmental agencies to record that a child has died, that would be a very logical step to maybe extend that service to have such a registry, and in that way, connect parents to each other and to organizations.
November 1st, 2018 / 10:05 a.m.
Blake Richards Banff—Airdrie, CPC
I want to start by thanking each of the parents and parent advocates who are with us today for their courage and their selflessness.
You're taking a very tragic situation that you experienced yourselves and are trying to turn it into something where you advocate for others. Although it may be a way to keep your children's memory alive, of course it won't do anything to reverse what you've experienced. You're certainly working to try to make sure others don't experience and have to go through what you did without support and without compassion. Thank you for your efforts and your work on behalf of other parents of loss.
You've all talked a little bit about that point of contact, generally at the hospital level, where there needs to be some change in terms of the information. It's the sharing of information that you're given, in terms of what's available as supports for parents. That is at a provincial level, but as a committee, we do have the ability still to make a recommendation that this is something that we encourage to see happen. It can be done through a mechanism like the federal-provincial health ministers' meetings, for example, where that's something that's encouraged, that there be that information provided across the country. That's something we can certainly still recommend.
Also, if there are truly privacy issues in that sharing of information at the government level, there's an ability for a form to be signed or something that would allow that to happen. That can surely be figured out. We certainly appreciate those suggestions. I think they're very important and well-taken suggestions.
I want to touch on one particular aspect of that, and I have one other question. I want to have each of you try to address it if you can.
First, we've heard from you today and from other parents about some of the terrible experiences of having to tell the story of your loss, multiple times in some cases, to numerous bureaucrats and civil servants to try to access what might be available to you. Different results have come in different places. I think two things come from that.
First is the idea that there would need to be some kind of a dedicated line that might be available at Service Canada, for example, where bereaved parents or people who are experiencing bereavement can go to talk to someone who actually understands their needs and has the proper information available to them, so that we don't have different outcomes and different experiences amongst everybody. I wanted to get your comments on that. Is that something you think is important to see?
The second one would be on the idea of the benefits themselves. Many of the parents who have come before us have talked about the importance of this being a leave specific to bereavement. Paula's example is a great reason why that's important. Sick leave has been raised, but it isn't possible for everybody for various reasons. Maybe you experienced that you weren't able to get it. In some cases it has been used already—during the pregnancy, for example.
The idea is that benefit would need to be specific and it would need to be automatic, so that we don't have to fight the bureaucracy to access it. It's something that's available to all grieving parents.
I want to get comments from all of you on that particular aspect of it—the importance of it being automatic, specific and universal in terms of a benefit—and the idea of a line that would be available to all parents, where there is someone who actually understands bereavement.
We'll ask all four of you, but we can start with you, Cheryl.
10:10 a.m.
Executive Director, H.E.A.R.T.S. Baby Loss Support Program, BriarPatch Family Life Education Centre
I'd love a line. I think it would be very valuable to have the the ability to know that you can call and someone is there who can answer your questions, who has been specifically trained and who has the information at hand. It's one person versus contacting department after department.
For the other piece about the benefit, if we could make it as simple as possible.... Even the idea that a family would have to.... I've only done the one maternity leave, so please excuse me if I'm not up to date, but I know that I had to send in a report every week to say whether I was working or not even though I was on maternity leave.
I'd like to see a guaranteed amount of time, where you don't have to keep showing that you're on that leave and that you still qualify for it—it's just given at that time.
10:10 a.m.
Director, Gardens of Grace
I think a dedicated line would be a wonderful idea.
I also think it's really important to point out that sometimes when people are on sick leave they can't afford to keep their health benefits through their work. When I was off on sick leave, we financially couldn't afford to keep our dental and medical plan because they're not cost-shared by our employer. I was employed by the Nova Scotia Health Authority. We couldn't afford to keep the benefits and that's what all of the counselling is under. That's a really important point to make.
10:10 a.m.
Banff—Airdrie, CPC
Paula, Jens, or Mr. and Mrs. Fuentes, do any of you have comments on this?
10:10 a.m.
As an Individual
Absolutely. For our part, I think the central line would be a really important thing to have. We know from experience that navigating through various government organizations immediately after the loss of a child is horrendous. Even though the people on the other end of the line are well meaning, as other witnesses have said, they're not adequately trained. Having someone there on a dedicated line would be a huge help to all of us.
In terms of how compensation could be structured or how it should be doled out, we could have something like you or Jens and I and all of the other witnesses mentioned: an automatic trigger whereby we could sign a waiver to our privacy so that the hospitals at the provincial level could communicate with the federal level. A “no questions asked” bereavement leave would be absolutely amazing.
10:10 a.m.
October15.ca - British Columbia Childloss Support Network
I just keep thinking about one thing, although I don't know if it has been raised before. The person already raised the point about extended health benefits. I do want to mention that we've talked about whether 12 weeks is enough and whether it's automatic enough.
One thing we haven't really talked about is how people get access to bereavement support if there is no organization in their area. We have many rural areas where it would be difficult to get in-person support.
I was wondering if the committee would consider something. If we know that it's really dependent on the extended health plan that someone might have to get any type of funding for counselling—and it is actually quite expensive—maybe we could talk about a benefit. It could be part of such a benefit that if this automatic benefit kicks in, there is going to be a schedule, a bare minimum of support that a counsellor offers.
Again, I'm not saying everybody has to take up that help. Maybe some people don't want it. If people are looking for support and there's nothing in their area, how do we pick that up? If they don't have extended health, and they can't go to a registered counsellor anywhere in their area or they can't afford it, is there something the government would do? Would it be prepared to fund three sessions, as a bare minimum, so that someone can at least pick up the phone and check in with somebody who's specifically trained on bereavement? This is particularly for those who are not in metropolitan areas where there might be support organizations that are peer-to-peer or volunteer run. We should not have people fall through the cracks in those areas.
10:15 a.m.
Liberal
Bobby Morrissey Liberal Egmont, PE
Chair, I just have a couple of brief questions and then I'm going to share my time with MP Vaughan.
I believe it was Ms. Harmon who made the statement about some of the jurisdictions covering funeral benefits for children of a certain age. Where is that?
10:15 a.m.
Founding Director, Gardens of Grace
That is in Great Britain. It was in the spring.
10:15 a.m.
Founding Director, Gardens of Grace
Yes. It was an MP who actually started this, because her child died and she pretty much went bankrupt to bury him, given the associated costs. It took her eight years to get legislation in, but it did pass in the spring.
10:15 a.m.
Liberal
Bobby Morrissey Liberal Egmont, PE
Okay, thank you.
I just want to recount something. My colleague Mr. Hogg referenced that nobody, outside of that one, seemed to have information on what may be covered in other jurisdictions. Three themes have emerged since we began the study of this particular motion, and I just want to restate them to see if you agree.
The clear one that came up was having to pay back benefits after a death. There have been a number of examples in that area.
One was that there is no clear information on what benefits are available and no commonality among eligibility criteria.
The third one is that there is a real patchwork of support services across this country, and there's no unanimity.
Do you agree that those are the three areas this committee should focus on as part of its recommendations?
Ms. Salter-Roberts and Ms. Harmon.
10:15 a.m.
Founding Director, Gardens of Grace
Yes, those are certainly the big ones that the HUMA committee would concentrate on. It also has to be taken into account that without the support of the health care system itself, leave is only as good as the supports you get. I would think it would have to be done in concert with Health Canada.
