The second evening, after receiving a diagnosis of advanced lung cancer, a nurse told me: “He may not make it through the night.” We were moved to a private room.
No one explained what to expect in terms of his death or how to comfort him. We were pretty much dumped; the only time we saw a nurse during that long night was when I went searching to beg for morphine.
If my mother and I hadn’t had our personal-support worker with us, I don’t know what we’d have done.
Those two nights cost $500. Afterwards, I wondered how on earth people managed the financial expense of having a vulnerable loved one in hospital for an extended period.
I now have some experience with that.
As you know, Ben had major hip and knee surgery on April 13. My husband and I took the week off. We took Ben home four days later. The next week we returned to work and had workers care for him at home from 9-4. It was then discovered that the hip hardware had dislodged and he had to have a second surgery to redo the hip on April 27. After that, he came to Bloorview where he was in a body cast for six weeks. He’s still at Bloorview doing the hard therapy it will take to get him walking again.
Ben is non-verbal and primarily uses sign language. I can’t imagine any parent leaving a non-verbal child alone in hospital – and certainly not one trapped in a body cast. We have three other children.
My husband sleeps at the hospital and during the week we have workers from 9 to 4. We have spent more than $6,000 in workers over the last 10 weeks.
We are not eligible for Assistance for Children with Severe Disabilities – an Ontario program to help parents cover extraordinary costs. It has an income cap of $63,421 for a family of four. However, even if we were eligible for this benefit, we would have spent more than the maximum $430 per month in the first week.
We do receive Ontario’s Special Services at Home funding – designed to get Ben into the community and provide parental respite. We are grateful for this funding, which gives us about five hours a week of worker support.
But our worker expenses over the last 10 weeks are significantly more than the annual amount we receive through this program.
When I asked the folks in Bloorview’s family resource centre about any other funding sources, they suggested I appeal to a service organization. No parent wants to ask a service group for charity.
They also suggested I call respiteservices.com, which is a group of agencies working together to provide comprehensive respite services in Toronto. I spoke to the facilitator who said she’d look into our situation, but that there weren’t any obvious sources to tap.
We are lucky. Our family has helped us. I've heard about families whose kids have been in rehab for months and gone bankrupt, lost houses, or had to sell businesses. The only way you can qualify for employment insurance – to take time off with your child – is if your child has a life-threatening condition. And that compassionate-care benefit covers only six weeks.
Nobody likes talking about money. But we need to recognize the true costs of hospitalization for kids with complex needs, even in our publicly-funded system.