By Michael Boriero - Local Journalism Initiative Reporter
The Quebec government recently adopted Bill 56, acknowledging for the first time the importance of family caregivers and promising to create a better support network in the future, but not everyone is completely on board.
Stanley Lake, president of Sunshine House in Mansonville, is a former caregiver. He took care of his daughter Mikala, who has cerebral palsy and the mental age of a small child, for 31 years. Lake believes there also needs to be an emphasis on life after family care.
“At some point the caregiver can no longer take care of the family member that needs the care and then that child, let’s say, or young adult, needs to go someplace and hopefully stay in the community and have access to community activities,” he said.
Lake, alongside several other families, built the Sunshine House in 2014 — a non-profit organization residence for four intellectually and physically disabled community members. A caregiver provided by the CIUSSS de l’Estrie - CHUS is there at all times throughout the week.
But it is difficult to find people interested in taking on such a challenging position, he explained, even for the Eastern Townships’ local health authority. Not only does the government need to provide more resources, Lake continued, it also needs to offer more incentive.
“The next logical step in what the bill proposes would be to augment the pay, so that you can attract and retain caregivers in facilities such as ours or in the elder facilities,” he said.
According to Almut Ellinghaus, Lake’s partner and Sunshine House secretary, they sometimes hired a caregiver to come to their home as an extra set of hands to help out with Mikala. However, they often needed to increase the caregiver’s salary in order to retain them.
There is no cash injection attached to the bill, leaving Ellinghaus to question the efficacy of the government’s caregiver initiative. And while the government plans to help family caregivers, they don’t address the families who can no longer provide necessary care, she said.
“The bill, on one hand, is a much-needed recognition, so thank you very much, but it’s a little bit of a slap in the face for those of us who moved on to the next step, the necessary next step not being able to be the natural caregiver anymore,” said Ellinghaus.
In a press release, Seniors and Caregivers Minister Marguerite Blais said that the bill is a historic one for Quebec. The plan is to develop measures to support caregivers in the various stages of their lives.
The adoption of the bill makes it so that the issue of caregivers is always brought to the forefront, regardless of the government in place. Among other things, the bill promises to create a national policy for caregivers. A government action plan is also on the way.
“This is a great day for all caregivers in Quebec,” Blais said on Wednesday. “This historic legislative change finally puts the spotlight on the issue of caregivers and reaffirms that this is a priority for our society for years to come.”
But what does that entail in terms of actual help, Ellinghaus asked during a phone interview. The bill needs to come with some real change, she continued, bringing caregivers into the home and also addressing when home care is not possible.
“We created a project to make sure our clients remain in the community and for parents to have access to them, but now they’re forcing us to take on the care again,” she said, referring to the bill’s focus on support for family caregivers.
However, while Ellinghaus and Lake search for more answers from the government, L’Appui pour les proches aidants d’aînés Estrie Executive Director Gwladys Sepogo applauded the government’s initiative.
Sepogo operates L’Appui’s Eastern Townships branch, an organization that supports caregivers for seniors. She preached patience when it comes to the government’s next steps. Solutions don’t happen over night, Sepogo said, the bill took a long time to get off the ground.
“The pandemic probably accelerated things, but this project was already in the works,” she said.
It was a battle to get the government to adopt this initiative, Sepogo continued. She commended Blais’ efforts to put caregivers in a better position to thrive. The government’s action plan remains a mystery, she added, but for now, people should focus on the positives.
“It will take about a year to drop the action plan, what will they do for caregivers, we don’t know, but just adopting this bill shows a lot,” said Sepogo.