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Five hours of help a day for 'high' quad

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    Five hours of help a day for 'high' quad

    Five hours of help a day for 'high' quad
    Being organized gives Terry Leblanc some independence

    Kim Pemberton
    Vancouver Sun

    Tuesday, March 11, 2003

    .Photo by Bill Keay, Vancouver Sun /...Terry won't eat until dinnertime.

    Photo by Bill Keay, Vancouver Sun / ...positioned just so or ..........

    Photo by Bill Keay, Vancouver Sun / His lunch must be ...

    Photo by Bill Keay, Vancouver Sun / Quadriplegic Terry Leblanc needs the help of an assistant each evening to get into bed and every morning to get out and dressed.


    Nodding towards a chocolate on his kitchen table that he can't eat at the moment, Terry Leblanc jokes that he's on the best weight-loss program there is.

    The 50-year-old Vancouver man can't reach the chocolate because he has no use of his hands and arms. As a quadriplegic, Leblanc must wait until the next visit from his support care worker to be fed.

    On a sunny afternoon, when most Vancouverites would be outdoors enjoying the weather, Leblanc remains inside because some days it's just easier than going out. On this day, Leblanc, interviewed in his modern west-side Vancouver apartment, talks about what it is like to be dependent on others to meet his basic needs.

    "A nice habit for me is going to Fourth [Avenue] and buying produce for supper. I usually ask one of the [store] workers on the floor to help me," said Leblanc, who describes himself as a "high quad," which means that he has absolutely no use of his hands because of the nature of his spinal cord injury.

    Being a "high quad" means simple tasks are impossible to do alone. He can't open the fridge and get a drink of water for himself. He can't get out of his bed in the morning, go to the washroom, dress, bathe or prepare a meal for himself.

    Those tasks must be done by a home support worker seven days a week. He is one of the first "high quads" in B.C. to live independently. After a diving accident in 1978 at the age of 25, Leblanc lived for one year in a group home, but he has been living independently in the community ever since.

    Having to go into an institutional setting is his "worst nightmare."

    "It's everybody's fear they'll get old and end up in a home. But in a disabled person's mind, you know it could happen sooner, especially when they are making cutbacks."

    Living independently, though, means living on a tight schedule that involves ensuring a support worker or a replacement is always available each day and planning his life according to the workers' availability.

    Leblanc gets five hours a day -- two in the morning, two at supper time and one in the evening, when he requires the worker to put him to bed.

    The first shift begins at 7:30 a.m., when the worker lets himself in and gets Leblanc out of his bed and dressed. After making breakfast and feeding Leblanc, the worker ensures that his large water bottles, with the sipping straws, are filled and lays out the medication he will need for the day. Lunch is also carefully laid out so that Leblanc can feed himself this meal.

    "The sandwich has to be tipped on its side and I hook my thumb on the edge of the sandwich and pull it over on my fingers. If I miss it and it falls flat that's it," he said.

    The worker leaves at 9:30 a.m. and doesn't return until 4:30 p.m.

    The next two-hour stint involves an evening meal preparation and once again ensuring anything Leblanc needs will be accessible once he's gone. A primary concern is making sure Leblanc is safe in his electric wheelchair, because if he were to fall out it could be life threatening.

    Leblanc does not use a restraint to keep himself secured in the chair. Instead, his arm is hooked around the back at all times.

    Should he fall forward -- he has poor trunk balance -- Leblanc couldn't return to a sitting position and his breathing would be severely restricted.

    "You have to be really organized," he said. "I know a few quads who have died at home. That's the risk you have to take when you want to live on your own. But to me it's a risk worth taking. It's better to have independence."

    - - -


    Asked why he doesn't install an alarm button that would be connected to a 24-hour emergency telephone line, Leblanc said he wouldn't have the arm strength to hit the button. And he noted many people on a $750-a-month disability pension couldn't afford to pay the additional $40 a month for the service, which the government refuses to fund. (Life Line is based in Toronto and serves 40,000 Canadians and 500,000 people in the United States.)

    The final shift for the home care worker is from 9 to 10 p.m., when Leblanc is readied for bed.

    Asked what happens on those nights when he may want to stay up late, Leblanc just shrugs.

    He said it wouldn't be fair on the worker to always request he come by later to accommodate Leblanc's desire to stay up late some evenings, but there has been the odd time he has requested it in order to go out for an evening with friends.

    "Your life is more or less scheduled. You get used to it after a while, but it limits your desire to go out knowing the logistics involved and you have to get back by 11-ish ... Life gets to be your 800-square-foot apartment. I see and feel isolation happening, but there's not much you can do about it."

    Leblanc is one of 450 British Columbians -- mostly disabled -- who are on the CSIL program (Choice in Supports for Independent Living), which allows individuals to hire their own home support workers with funds from the health ministry.

    He said the ideal situation for people like himself would be for the hours to be allocated federally so Canadians could choose the province in which they want to live.

    Leblanc's family is in Nova Scotia, but he can't live there because the level of government support in that province for persons with disabilities is lower than in B.C. There, Leblanc said, he would end up in an old-age home.

    - - -


    Leblanc was married in 1989 and divorced in 1994, at which time he was forced to return to B.C. to at least be able to receive the five hours of home support.

    "I have a great group of friends here and started a new life," he said.

    The CSIL program, he said, allows him greater control over his life. As the the employer, he has the ability to choose who will work with him and decides the best use of the workers' hours. Some days, particularly in the summer, he'll choose to use the hours by having the worker drive him to Jericho Beach, where he participates in a sailing program.

    Also, being able to live in his own apartment means he can choose what he wants to do at home. On this day he was trying to decide on different paint chips for the kitchen and was looking forward to a painter coming back to finish the apartment.

    The main drawback to the CSIL program, he said, is that it charges participants a "user fee that basically takes away any incentive to work."

    "For a person with a disability to work, they're basically giving up their disability pension and then to get hit with a user fee, you are basically working for free," he said.

    Leblanc is taking course in computer programming Monday to Thursday at Langara College but chooses not to work because of the financial drawbacks.

    "It's a huge leap of faith to go to work. If you do you're losing that huge safety net."

    Leblanc said he would prefer to work, but in the past three years he has accepted his situation.

    "I've finally realized work isn't who you are," he said. "I'd prefer to work every day but I'm more at ease over the whole thing now."

    Leblanc said he can't understand why the Liberals, who are supposedly more "business slanted," wouldn't want to remove the user fee in order to encourage people with disabilities to find work.

    He also can't understand why cuts continue to happen in home support.

    "I can't believe they're making more cuts. I thought they [the Liberal government] would understand cost benefit analysis. They'd see adequate home care equals less money spent sending people to the hospital ... it's all common sense. But they don't seem to fund it properly."


    - More than one million Canadians receive home care services (nursing, home support and therapy) compared with 840,500 in 1996/97.

    - Home care spending has more than doubled, to $2.1 billion in 1998 from $1.03 billion in 1991. In February, Canada's first ministers reached a multibillion-dollar health care deal that will include additional investment in home care. Premier Gordon Campbell estimated B.C.'s share will be about $1.3 billion of the $12 billion Ottawa is to deliver over three years. A senior federal official, however, said the actual amount of "new" money for health services is $27 billion over five years and $13.4 billion during the next three years.

    - Home care is a provincial responsibility, with financial support from the federal government, but the range and type of services vary between provinces and territories. For instance, six provinces (B.C., Alberta, New Brunswick, Nova Scotia, Prince Edward Island and Newfoundland) use an income test to determine how much a client should pay in fees for such things as personal care or meal preparation.)

    - Government funding for home support is limited by setting a maximum number of service hours. In Ontario, the limit is 80 hours in the first month and 60 hours a month thereafter. In P.E.I., the limit is 28 hours a week, and B.C. sets a guideline of 30 hours a week for clients requiring the highest level of care at home.


    Friday: An overview of Community and Continuing Care with profiles of those most needing help at home -- the elderly and the disabled.

    Saturday: Is there a false economy in cutting home support? Is government truly saving money by eliminating basic services, like housecleaning and meal preparation?

    Monday: Assisted living -- The provincial government sees this as the wave of the future. But can the promised 3,500 units even meet the current demand for senior care never mind B.C.'s rapidly aging population?

    Today: Government officials defend policies and funding decisions regarding home care for the most vulnerable, while critics charge the system is in turmoil and creating uncertainty.

    Ran with fact boxes "Staying at Home" and "Home Care Facts and Figures", which have been appended to the end of the story. Interview with Terry Leblanc.

    © Copyright 2003 Vancouver Sun

    Interesting. I think I'd kill myself if I only had 5 specific hours a day. You don't have any freedom. Also when do you have time for your bowel program and who turns you over at night? 11 pm-7:30 am: more than 8 hrs in one position?


      i guess you don't realize how good you have it , till it's put in front of your face. when is some kind of improment coming already
      oh well


        yup, i'm very lucky to have full-time help, i do appreciate it