Hanes: Home-care recipients mourn death of autonomy
François Bourbonnière said he almost had to miss the demonstration against cuts to home-care services in Quebec outside the CLSC Rosemont.
After fighting for and finally securing a second shower each week, his additional bathing appointment was scheduled for afternoons. Forced to choose between personal hygiene and other engagements, he then had to launch a whole new battle for a more convenient time-slot.
'I want my shower in the morning so I can be involved and live my life,' Bourbonnière said Wednesday, as a crowd of about three dozen demonstrators held a funeral procession of wheelchairs, motorized scooters and walkers from a nearby park to protest the 'death of autonomy' — and in many cases their dignity.
This was just one of countless frustrations described by some of the most vulnerable Quebecers, who are bearing the brunt of budget cuts in the health and social services sector. Late last year, Santé Québec was given a mandate to find $1.5 billion in savings. Although this year's budget increased health funding, it doesn't keep up with rising costs in the system, which means programs and services are being squeezed further.
The impact is ricocheting throughout the system, but reductions to home care are taking an outsized toll on those who wouldn't be able to live independently without assistance with meals, dressing and cleaning.
Besides frail seniors, adults with disabilities and parents of children with special needs are also being left in the lurch.
'Not a week goes by that we don't hear from somebody whose hours have been cut,' said Rose-Marie Wakil, who is both a recipient of services and a caregiver for her elderly mother, as well as a service co-ordinator at Ex aequo, which organized the sombre event.
Home care is dispensed by local CLSCs or through a program called Chèque emploi-service, which allows those in need of care to be refunded for services they arrange themselves. Despite the program being more cost-effective — accounting for 37 per cent of home-care hours across Quebec but nine per cent of the budget — many local health authorities have suspended new enrolments.
Chèque emploi-service is especially popular with adults living with disabilities who have jobs or attend school because the hours are more flexible.
Wakil said if someone comes midday to bathe her mother, it means she has to get dressed and undressed twice, which is exhausting. Or if the caregiver shows up at 6 p.m. to do her bedtime routine, it means she gets put to sleep early 'like a baby.'
But it's not only home-care hours that are on the chopping block. A decades-old fund that subsidizes renovations to adapt dwellings for mobility challenges has been slashed. The 250 people on the waiting list now have to get in the back of the line seeking assistance from the City of Montreal's program.
More worrying is that Quebec is mulling charging people for home-care services based on their incomes.
Hugo Vaillancourt, who advocates for the rights of Quebecers with mobility challenges at Ex aequo, said such a move would roll back decades of progress on inclusion and integration.
'Like any kind of tiered, pay-based-on-your-income type thing, it's always problematic, because where is the cutoff going to be? Who's going to end up in the situation where they don't have that much money, but now they have to pay extra and the reason is that they have limitations?' he said. 'So people are being taxed because they have limitations or because they are getting older. That's a big concern.'
Vaillancourt attended a consultation in Quebec City this week where Minister Responsible for Seniors Sonia Bélanger spoke about a forthcoming 'national policy' to accelerate the offering of home-care services. Some participants from community groups staged a walkout, singing a funeral march as they left.
Bélanger has mused publicly about contributions from home-care users as well as turning to the private sector.
Bélanger is also considering relying more on non-profit groups and volunteer organizations to deliver meals or provide transport. And she wondered whether home-care providers need to have so many professional qualifications as Quebec seeks to recruit an additional 6,660 caregivers to meet growing demand.
The MNA said she wants the Chèque emploi-service program to be 'more accessible and easier to use,' according to Le Devoir.
But that's not what those dressed in black and carrying cardboard tombstones back in Montreal are experiencing.
After waiting years for an apartment in a specially adapted living facility, Frédéric McNamara, 30, finally moved in last summer. Now he is being told he would be better off in a nursing home.
'It makes no sense to send me to a CHSLD,' McNamara said. 'I work full time. I'm a video-game designer. ... I need assistance to get up, go to bed, prepare meals and feeding. But for the rest, I'm autonomous. I work. I can organize my transport and go by myself. In a CHSLD I'd have a room, but now I have a 3 1/2. I wouldn't have that in a CHSLD. I couldn't decorate it how I want. I wouldn't have a kitchen. When I moved, my goal was to take some of the weight off my parents' shoulders, who were my caregivers.'
Linda Gauthier, 67, has received home-care services since 2005, but increasingly relies on her husband as she ages and her condition worsens.
'He's got another job. I have to call him at work to come if I have a problem. But if they cut that, I would have to go to the long-term care,' she said, noting that it could cost many times more than home care.
Gauthier said she would take medically assisted death over moving into an institution.
'I'm telling you, I won't even go to the long-term care. I know I can have it — three weeks and everything will be done if I ask for medical assistance in dying,' she said. 'It's done with my notary, my husband knows about it. I'm so sure about it.'
Some could soon have more to grieve than autonomy.
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