Human Resources Committee on Oct. 25th, 2012

[Mike Sullivan, NDP, York South—Weston, ON]

Thank you, Mr. Chair.

I want to correct something that was said on the other side a few moments ago. You're not just here to listen to us preach to you about the meaning of the law; we want to listen to you. This is one of the places where these laws can actually get amended, can get changed, can get made better. We want to hear from you, and we have heard from you, in great detail, about some of the ways that the law may not solve certain problems. We want to hear about ways that it can be amended and about what issues are out there beyond the ones that are dealt with directly in this legislation, so thank you very much for being here and thank you for giving us that advice.

There was a statement made by Ms. Loblaw that 70% of people are actually turned down. One of the things we're concerned about is the method in which this legislation will be implemented by Service Canada and whether or not they have the expertise to actually administer this thing. They don't have first-hand knowledge of social work. They are not social workers. Service Canada agents are merely interpreting the legislation. The minister has apparently said that a specialist will be the one who decides.

Is that how Ronald McDonald House decides?

[Cathy Loblaw]

It is how Ronald McDonald House decides.

The hospital refers the families to the houses. We are doubling our capacity to be able to serve more families. Currently, in terms of the structure, we rely on the expertise of the hospital and the doctors to refer to us the families that are in the greatest need and have the greatest physical distance to travel.

For most of our houses, they have the criterion that a family has to live at least 80 kilometres away to be considered for staying at the house. Then we take the referrals through the social workers and the doctors at the hospital. That's how the families come to stay with us.

The good news is that we have doubled in size in the last five years, up today to 476 bedrooms from 217 bedrooms five years ago. We're able to accommodate far more families now than we had in the past.

We do rely very much on the specialty centres in the hospital to refer the families to us.

[Mike Sullivan, NDP, York South—Weston, ON]

Does your agency receive any government funding whatsoever?

[Cathy Loblaw]

No. The houses, on an annual operating basis, do not receive government funding. However, government has been a very active partner, both federally and provincially, in the building of our new houses and in investing in the infrastructure of the houses over these past five years.

[Mike Sullivan, NDP, York South—Weston, ON]

With regard to the age of a child, we heard on Tuesday that it seems somewhat arbitrary or prescriptive to suggest that when the child is 18, a parent's responsibilities somehow end, particularly in the case of persons with developmental disabilities.

I have a friend who is nearing 80 and is caring for her almost 50-year-old daughter every day. She certainly could use some of the supports that are being talked about here, but they're not available. We're also aware from Tuesday's witnesses that for a disappeared or a murdered child, it doesn't really matter whether the age is 18 or not.

The other thing we heard about was some of the inflexibility of the legislation, in that it has to be all in one time and can't be spread out over bits and pieces of time, which meant that its usefulness was somewhat limited. Is there some indication that, even as it's proposed, it should be more flexible, that we should be able to use it over a longer period of time, perhaps, longer than 37 weeks? You've suggested 55 days as the average, but I'm sure there are people who need a lot more time than that. Are there ways in which this legislation can be improved by making it more flexible?

[Cathy Loblaw]

To put the 55 days in context, that's a reference to the average number of days a family stays at the house—

[Mike Sullivan, NDP, York South—Weston, ON]

Right.

[Cathy Loblaw]

—which is different from the average number of days they spend caring for their child and healing their child, so just keep that in mind.

As I said, more than 50% of our families come to the houses two and three times. Again, because of the amazing medical advances, the healing time means taking more treatments over longer periods of time, so it is an extended period in which families are fighting for the lives of their children and healing their children.

I'll let you speak to the specifics of the flexibility, Tyler.

[Tyler Hnatuk]

As I mentioned, our perspective on Bill C-44 is that extension of compassionate care benefits would provide that small window in the context of such great need, but with respect to those modest amounts of support, parents of children with disabilities can do so much with that. As you spoke to in your experience with an 80-year-old parent of a child with a developmental disability, it's a lifetime commitment.

There is certainly a blend of supports that are needed. The scope of this current bill is not going to address all of the needs, nor would extension of the compassionate care benefits. Really, a blend of supports and a strategy are needed for caregiving.

The situation is really similar to those of the parents who began our movement more than 50 years ago. Out of the decision to pursue a good life for their sons and daughters, they decided to keep them at home rather than send them away to an institution. They did so without any support whatsoever. It still remains the case that parents who decide to provide so much care to their child have not been recognized sufficiently by our policy and financial incentives for our caregivers.

[The Vice-Chair, Liberal, Rodger Cuzner]

We're going to have to move along.

Thank you very much, Mr. Sullivan.

Thank you for the answers.

Go ahead, Mr. Daniel, please.

[Joe Daniel, Conservative, Don Valley East, ON]

Thank you, Chair. Thank you, witnesses, for being here this morning.

My question is for Ms. Loblaw. I know that you were going to talk about some seven points that you have. Maybe you could enlighten us on them.

[Cathy Loblaw]

As I said, when we saw the growth of the houses increasing, we wanted to understand more specifically the context that the families of sick children were living in and how that was driving the support for families that we wanted to contribute to. For us, it was an enlightening piece of work that really helped us understand the new normal for these families. I'll share with you the key points, some of which we've already touched on.

One of the most important ones is that more families have to travel to get the care they need for their child. That is having a huge impact on their lifestyle and their economic structure. The second is that children are healing, which is the wonderful good news, but, again, it's extending the period that their lives are disrupted.

When we looked at the financial burdens that families face, we were quite shocked by how significant they are and how deeply they affect families on every level of finances. Let me give you a couple of specific examples of what I mean.

There was a wonderful study of 99 families that found that in the first three months following their child's cancer diagnosis, the average impact of costs for them was $28,475—incredible. Some 94% of mothers and 70% of fathers reported a work loss amounting to a considerable cost for the family. The median income loss was $2,380 for mothers and $1,260 for fathers. On top of this, they're having to pay for their accommodation and for care for the siblings.

The economic impact was incredibly devastating for families. This is their last priority; their first and only priority is how to heal that child, so it's about really understanding the magnitude of that priority and then recognizing that there just aren't enough supports and subsidies for families today to help them manage the reality that they're now trying to deal with.

Another point was obviously the emotional need, which we've talked about, and how significant that need is for families. I think what is really important to understand as well—while we understand it intuitively, the research spoke very clearly about it—is the role that having your family nearby has in both the quality of care for the healing of the child and the outcome of care for the healing of the child. A family together healing a sick child makes an extraordinary difference; there's powerful research around reduced length of stay in a hospital, the healing experience, and the actual healing outcome.

I think the last point that perhaps surprised us was that the family being together and having the infrastructure to support them being with their sick child drives greater hospital efficiencies and saves dollars to the health care system. Having the family in attendance and having a Ronald McDonald House and resources such as that can decrease the length of stay and cost significantly less than being in hospital, if there's out-of-hospital treatment and that kind of thing.

I thank you for asking the question and for the opportunity to go back to it. Overall, our key take-away from the research was quite sobering: to appreciate the emotional, financial, and physical constraints and difficulties that families go through when they're trying to heal their sick child. An act such as this, which gives them that surround support and makes it that much easier for them, is really important to giving the families the time they need to be with their child.

[Joe Daniel, Conservative, Don Valley East, ON]

Do I have time for another question?

[The Vice-Chair, Liberal, Rodger Cuzner]

If you can ask and answer a question within seven seconds.

[Joe Daniel, Conservative, Don Valley East, ON]

My question is to Mr. Hnatuk.

How big an issue is the nature of critical illnesses for the mentally disabled?

[Tyler Hnatuk]

Sorry, I'm not sure I understand the question.

[Joe Daniel, Conservative, Don Valley East, ON]

I'm trying to get a grasp of how many critical cases there are of people who are mentally disabled.

[Tyler Hnatuk]

People with intellectual disabilities make up approximately 2% of the population. They are often combined with other forms of disability that may involve medical complications. Generally, 2% of the Canadian population have developmental disabilities.

[Joe Daniel, Conservative, Don Valley East, ON]

How many have critical illnesses?

[Tyler Hnatuk]

I don't have those figures immediately with me, but we could provide them to the committee.

[Joe Daniel, Conservative, Don Valley East, ON]

That would be wonderful. Thank you.

[The Vice-Chair, Liberal, Rodger Cuzner]

That's your seven seconds.

I'll exercise the chairman's prerogative here and I'll use the last 14 minutes to ask my round.

I have two quick questions, really, to any of the panellists.

We had the parents of children who had been lost through crime in the other day. They had very compelling stories. Obviously the legislation treats those who lose a child through an illness differently. Parents of a child criminally abducted can receive 52 weeks of leave without pay. Should the child be found, the parent can get two weeks before they must return to work. Should the child die, the parents can take up to 104 weeks of unpaid leave.

In the case of a critically ill child, they get 37 weeks of leave without pay, but should that child die, they have to be back the following week, so if their child dies on a Thursday, then they have to be back to work on the Monday. That's how we interpret the legislation.

Do you see that there should be some provision...? Could you give me your views with regard to the grieving process of losing a child through illness, or losing a child through a criminal act? Is there a great distinction between the grieving processes? Should there be consideration made for those parents who lose a child through illness?

[Fred Phelps]

Among the social workers who were solicited for response on this bill, that was an issue they brought up—the fact that if a child does die, they'd have to go back to work the next week, and the benefits are extended. There was consideration to ask the committee, in the implementation of this bill, to be open to the experience of families and to see if amendments needed to be made. I think the amendments in the front end would be appreciated, but if in the roll-out the experience of families could be reflected in the grieving period—probably a week or two would be compassionate—it would be very much appreciated by front-line social workers, families, and children.

[Tyler Hnatuk]

I would just add that our reading of the bill is that it is a positive first step toward in recognizing the terribly difficult circumstances that families find themselves in, however they find themselves in those circumstances. Anything that can provide that small window of flexibility and accommodation that compassionate care benefits can provide would be welcome steps towards recognizing these extraordinary circumstances that parents find themselves in.

[Cathy Loblaw]

I will echo what everyone said. This is an important first step in the grieving process of losing a child. It's something that is very different and very individual and very personal. Whatever we can do to surround and support those families with the support they need as they're going through that grieving process is really important and very much valued.