Voluntary caregivers: the invisible backbone of medicare
Four years ago, Michael Ignatieff presented himself as a smart, sophisticated patriot, eminently qualified to lead the nation. Voters perceived him as an aloof, self-absorbed academic who didn’t understand the country or its people. His political career was mercifully brief.
But the former Liberal leader got one thing right: He recognized unpaid caregivers as the backbone of Canada’s health-care system and offered them support.
His “family care plan” would have given workers caring for a seriously ill family member six months of paid leave and offered those outside with no earnings a monthly allowance of $1,350. Ignatieff’s proposal sank with him in the last federal election. The Liberals have not resurrected it.
The only vestige that remains is a modest Conservative tax break. Seeking to undercut the Liberals on the eve of the 2011 campaign, Prime Minister Stephen Harper announced a family caregiver tax credit of less than $1 a day. It applies to just 18 per cent of the 2.7 million Canadians who sacrifice their income, career prospects and sometimes their health to care for loved ones.
With another federal election approaching — and the baby boom generation entering retirement — caregivers have been pushed to the periphery of the federal agenda.
The provinces still talk about them — praising their dedication and selflessness — but don’t provide enough home care or respite care to ease the physical burden or alleviate the loneliness of caring for a family member with dementia, severe disabilities or chronic illness.
Advocacy groups lobby for seniors but seldom focus on the family members who feed, clothe, bathe and clean up after those who need round-the-clock care.
Only when caregivers burn out requiring medical attention do policy-makers pay attention.
Ken Wong, a robotics engineer who quit his job to care for his wife, diagnosed seven years ago with early-onset dementia, wants to avoid that fate. Last week, he wrote a poignant letter to his MPP, Helena Jaczek (who represents Oak Ridges—Markham and serves as minister of community and social services), pleading for relief. With his permission, here are a few excerpts:
“Some days are very tough to get through. She (his 53-year-old wife Nada) frequently screams and becomes agitated — sometimes for hours on end, night and day. It is a very exhausting and challenging role.
“It is a lonely job. For whatever reasons, most friends and family seem to have distanced themselves. Sometimes there is more compassion from strangers.
“I am keeping my promise to my wife to cherish and protect her for better or worse, in sickness and in health till death do us part. But it is a long goodbye.”
Wong didn’t ask for much. He suggested that Ontario look at Nova Scotia’s five-year-old caregiver benefit. Early research shows the $400-a month payment has reduced the probability of institutionalization by 56 per cent. He appealed to Jaczek to take the idea to the cabinet table for consideration in this spring’s budget. He ended his letter with a heartfelt plea: “Caregivers need your support to be strong physically, emotionally and spiritually to endure the daily demands for many years.”
They don’t appear to be a high priority for Health Minister Eric Hoskins. His “action plan for health care,” released last week, did not mention caregivers. (Officials in his department pointed out that families can request temporary respite care at their local community care access centre.)
The federal outlook is cloudy-to-bleak. The Conservatives are content with the status quo. The Liberals have said nothing specific, although Justin Trudeau has talked about the overstretched sandwich generation (families with young children and elderly parents). Only the Democrats, who are running third in popular support, are offering tangible help. They would introduce a caregiver tax benefit modelled on the child disability benefit (which provides a monthly payment of up to $220 for parents caring for a severely impaired child).
For the most part, caregivers are out of sight and out of mind.
They are easy to take for granted. They’re quiet, steadfast and undemanding. They deplete their savings and sacrifice their freedom. Without them, the cost of health care would skyrocket.
A smart government would safeguard such a vital asset.