Incurring Costs due to Constraints of Publicly Funded Services
physical disability, Referred
SAID, PHYSICAL DISABILITY
During the transition process, respondents highlighted various additional costs not covered by publicly funded services for transportation, medications or medical equipment, and home care supports. Patients spoke of inadequate, unreliable, or lack of clarity about public home care to meet their needs, which then led to additional costs for themselves and/or their family caregivers. Referred to as CCAC, the province’s public community care access centers at the time, one patient responded: “I’ve even got a church member who will go and buy my groceries. Because it didn’t seem that CCAC was available for that. It turns out, for the longest time they had that service and they’ve now cut it. And to go to appointments, the same thing. I did not know that I could ask for an escort. And now CCAC, I’ve discovered now, that they have cut it.” (02, low income patient). Individuals with physical disability voiced additional costs needed to meet home care, equipment, or transportation needs. Some individuals spoke of challenges in getting to appointments or picking up medications, which led to additional costs for transportation or additional help in the home not covered through public services. One respondent voiced, “I couldn’t sweep my floors. I couldn’t vacuum. How do you make a meal with one hand?” (07, low income patient). And another expressed, “I’ve got personal support workers put in place so that at the end of their time with me, I’m in the wheelchair with a coat and I’m going out the door with them. So that’s five days a week. If I want to do anything on a Saturday or a Sunday, they don’t have as many people…If they are going to come, they will come when you see them…I don’t do a lot of things on weekends.” (02, low income patient).Patients and caregivers also expressed financial costs for the caregiver. “You know, my wife’s home too as she’s trying to take care of me and I don’t know if that’s a good thing because we need money to survive, pay bills and mortgages” (01, patient, income unknown). Another caregiver respondent mentioned how their ability to assist their family member is limited by how much time they are able to take off from work. “Having said that, I was averaging a day a week because of all his medical appointments. And that was interfering with my ability to earn a living.” (17, caregiver of low income patient). Additionally, when caregivers supported their family members by conducting IADLs including “going to the grocery store … cleaning his house … doing his laundry,” they witnessed losing the opportunity to engage in the relationship presenting as a social cost to caregivers. A caregiver shared the social cost of conducting IADLs for their loved one as limiting the time to “go and visit my father and have quality time with him.” (17, caregiver of patient with low income).