When my Dad was hospitalized last year, we quickly realized that our presence – or that of someone we hired – was necessary 24/7. My dad had no short-term-memory and became confused without someone to orient him. We hired a personal-support worker to sit with him at night.
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.
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.
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5 comments:
Louise, it's shocking to know the amount of money for Ben's care in such a short time! I feel for you and your family. And you're right -- no one likes to talk about money but it's definitely a topic that we need to talk about, IMO.
Even for Gabe to attend summer camp, we pay out of pocket for his camp companion. We had no choice as well -- we were told that it was a must. I still have to look at different sources for funding. I don't even know if we qualify for funding either.
And a big part of me feels guilty asking for help, too. I think that's probably a whole other topic.
So interesting -- and sobering.
I feel like people in the states don't understand. They think that since we have "Healthcare" EVERYTHING is funded. Unfortunately, that's not the case. While trying to find new therapy for my daughter (with CP) I came across one. But she recommends $80 a session for 10 sessions. That's $800 in a WEEK. I don't know many people that have that kind of money just laying around. especially not parents of special needs children. It's a tough road we have to travel on.
So much for pubic funding!!!
I'm glad you have written about this, I think many people, myself included, would consider Canada as a country with an efficient and accessible health service.
I think, when it comes to the care of children and adults with complex needs in hospitals, this is often the case in many countries. Hospitals aren't equipped, staff wise, for people who require 24/7 care/assistance.
Hi everyone -- thanks so much for your messages.
I would never trade our publicly-funded health system. But there are many things that fall outside of it when raising children with disabilities.
Holland Bloorview (I have to remember our new name!) is exceptional in treating the whole child and family. What I found in the adult acute-care system was that all the dollars went to technology and there was no hands-on nursing -- the nurses tended to be at the nursing station behind computers monitoring the technology that the patients were wearing. The human touch which is critical in healing was gone.
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