Containment, Manon Rivest knew this long before the pandemic.
For almost three years she has been in extreme confinement, a prisoner of her house. Three years that she has been fighting for one basic thing: being able to enter and leave her home with her wheelchair.
Manon became quadriplegic after being struck down by Guillain-Barré syndrome. It was six years ago, a day in May. She was then 54 years old. Overnight, her life as an active woman fell apart.
She was told that she was “a CHSLD case” and that she would never live in her house again. Despite everything, Manon got up. With great courage, she fought to challenge the worst predictions. She fought not to stay in CHSLD. In September 2017, she managed to return home, to her house in Sainte- Marthe-sur-le-Lac, with the hope that her little nest could be adapted to her needs.
Almost three years later, this is still not the case.
On 21 last May, because of a toothache that has persisted for too long, he had to call 911 for a simple visit to the dentist. An ambulance to go to the dentist? Yes, yes, you read that right.
Manon is entitled to the Home Adaptation Program (PAD) of the Quebec Housing Corporation (SHQ). The objective of the program is “to allow the disabled person to enter and leave their home, to access essential parts of it and to carry out their activities of daily life, in a safe manner” .
That's good. This is exactly what Manon wants. Have access to the outside world. Being able to have a bath to relieve her pain – something that has not been possible for her for almost three years.
Listening to her tell me about her fight, reading the mountain of letters she wrote in vain to the Prime Minister, the Minister of Health and Social Services and others, we have the impression that she is in the house which drives you mad Twelve works by Asterix . Last door on the right, ma'am … Except that there is no door on the right.
The CISSS des Laurentides recognizes that his situation is far from ideal, that it is not normal to have to go to the dentist in an ambulance and not to have been able to receive a single bath since September 2017. It is also recognized that, due to the lack of sufficient home care resources, it has so far been impossible to offer physiotherapy in Manon. Admittedly, she receives help morning and evening from the CLSC, which she appreciates. But that's not enough. There are only two physiotherapists for the entire Lac-des-Deux-Montagnes territory and only one physical rehabilitation therapist who provides long-term care.
We recognize all that. But at the same time, it is suggested that, in a way, it is his choice. “We are very, very concerned about the mental health, physical health and safety of this lady. But unfortunately, as she is perfectly capable of making informed choices, it is not possible for us to go against her decision to return to live at home, “said Myriam Sabourin, communications manager at CISSS des Laurentides.
“Our support teams really made him understand all the issues of his decision: the significant isolation that came with it and the steps that would be necessary to adapt his home.
“She understood very, very well the decisions she made and the effects it would have on her own life. And despite that, she maintained her decision. “
For the CISSS to provide adequate home care in Manon (a bath, for example), it is necessary that his house is adapted, it is said. And for his house to be adapted, Manon would have to agree with the SHQ on a solution.
This is where it gets even more complicated. The SHQ favors the solution considered to be the cheapest, which would consist of installing an access ramp at the back of the house. But for Manon, this solution is not suited to his needs or his budget. Since she lives alone, she cannot count on anyone to snow and deglaze the hundred feet behind her house so that she can get out of her house independently. “With this proposal, I will not come out of winter. “
Manon therefore chose another solution proposed by the SHQ, which consists rather in adapting the front entrance of his house, by installing platforms (lifting devices) allowing him to circulate in a motorized wheelchair.
But here it is: as it is not the low-cost solution preferred by the SHQ, the Company considers that it becomes a personal project and does not cover the costs of repair or repair in such a case. replacement of equipment. “It's his choice,” said André Ménard, director of communications for the SHQ.
Manon is therefore at an impasse. She knows that the subsidy to which she is entitled to cover part of the cost of the work is fixed (a maximum of 33 00 $ 0 from the SHQ for work that will cost double). If she also has the financial burden of maintaining equipment on her shoulders, she will not be able to cope.
Manon’s request is entirely legitimate, according to Sarah Limoges, from the organization Moelle épinière et motricité Québec, which helps her defend her rights. “We are at 100% agree with M me Rivest that our domicile, this should be our home and we should be able to decide what is right for us. It would be our ideal world and we will work in this direction. “
At the moment, we are far from the ideal world. Although particularly cumbersome and complex, Manon's case illustrates the need to review the Home Adaptation Program.
“I have several files of members who complain about the PAD. It’s very representative of the collective need to improve it. There is an administrative burden. Often the program is not generous enough in terms of funding or the measures proposed do not necessarily meet people's needs. But that's it or nothing … “
Can we say that all this is ultimately Manon's “choice”? Not really. She did not choose to be sick. She did not choose to end up with a disability. She did not choose to be without work and without pay. What she chose was to live at home with dignity, despite the many obstacles in her way. Before being a choice, it is a right.
At 60 years old, she doesn't want to life in a CHSLD or in a residence to which we believe it condemned. Rather die, she said, bursting into tears. “I was even more unhappy there. I thought I would die everyday. It was hell. You have no freedom. Just because I'm a disabled person doesn't mean I don't have the same rights as others. “
Sarah Limoges adds more. Manon’s place is not in a CHSLD. ” Mrs Rivest is still independent at home. She is very lucid. She has no cognitive loss. She has the full right to feel at home for as long as possible. “
With COVID – 19 which puts the importance of fostering home care at the forefront, isn't ensuring that this right is respected more urgent than ever?
Until better home support policies, what to do? Like other people struggling with similar difficulties with the PAD, Manon turned to crowdfunding. In March 2018, she launched a GoFundMe campaign. Unfortunately, she only raised 3115 $, far from her goal of 75 00 $ 0.
So what ? To move out ? Manon can't imagine it. Too insecure after all she’s been through. Start all over again. Leave a neighborhood she loves. Create a new support network. And after the floods in Sainte-Marthe-sur-le-Lac, what resale value would his house have?
His house remains his refuge. “This is where I feel safe. I know it may sound outrageous from an outside point of view. But when a place reminds you of happy days and you see your garden in front, your garden in back … ”
That's all he has left. A garden through his window. Hope for a day walking around.