Yes, you can imagine that as a loved one becomes gradually paralyzed, there are the very physical mobility aspects. That is where an organization like ours—and in your riding it would be our organization—would help to fill a gap left by the health care system.
These people are in their homes and as they're losing their independence, they require supports: hospital beds, wheelchairs, ceiling lifts, things to be able to get people in and out of their homes. If those aren't in place, then they're even further isolated, but again, as their care needs increase, our health care system isn't keeping up with that, so often a caregiver, someone within the family, will have to stay home.
Mr. Davies had asked about the costs associated with it. We had done a study and we know that the costs associated with ALS are between $150,000 and $200,000 in the course of the two to five years that someone will live with this disease. We're talking about loss of income as well. The social isolation as well as the financial constraints become even more significant, so our population is making very hard decisions: “Do I bother modifying my home for the six months I'm going to enjoy it? I'm going to have to take the equity out of my home, out of my child's education fund to be able to support this,” or unfortunately, “Will I have to make other choices about how I'm going to live out my final days as a result of those hard financial considerations?”
Social isolation is an important aspect that we also help to support. Again, we are a donor-funded organization that has people in our communities around the province. We work hand-in-hand with the ALS clinics, but once somebody is diagnosed, they're immediately signed up with our societies and our people will go to their homes and help them to start navigating their journey. We're providing psychological support groups so they're able to be with people who understand what they are going through. We have many supports in place like that to be able to, but we're a donor-funded organization. Should a charity have to fulfill this role in our society?