national caregiving strategy: a call to action for support and recognition of canada's caregivers
7 minute read
just about everything brenda lenahan does is inspired by her son cole and her unwavering commitment to his needs, including reaching out to other families who face similar caregiving challenges of kids with complex needs.
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when her son cole was three months old, brenda lenahan was already aware that he was missing some developmental milestones. understanding the extent of his challenges would take time and patience. at about 18 months, he was diagnosed with a very rare genetic condition called mct8 deficiency, also known as allan-herndon-dudley (ahds) syndrome. the genetic x-linked disorder, that mostly affects boys, is a neurological condition that impacts mobility, cognition and general health—terrifying for any new mom who would do anything for her little boy to have a full and joyful life.
“it can be scary at first, but i feel like i was lucky because i quickly moved toward the learning part and the acceptance of it,” says lenahan, a parent whose world had to change to become a caregiver.
“he’s inspired everything that’s come since he was born. everything has changed and i have let him guide that, i suppose. it’s a different life completely than i had before.”
her relationship with cole’s father ended and she left her job to take care of cole, who is now 10 and uses a wheelchair and walking devices. he’s non-verbal and learning to communicate with a device that tracks his eye movement and generates speech. he also has virtual home-schooling and sessions with music, physio and occupational therapists. “he really does need a lot of support, but he’s also very good at communicating his emotions and his likes and his dislikes and that kind of thing,” she says.
when apartment rents kept climbing, lenahan and her son moved from cumberland, british columbia to the tiny village of tahsis on the west coast of vancouver island for a slower, kinder pace and a house she had bought 20 years earlier for a song because the town mill had shut down. she’s made the house more accessible for cole by widening doorways, reconfiguring and enlarging the bathroom, and putting in a track system for a ceiling lift so that she can get him out of bed into the bath more easily, for example.
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to help make ends meet, she started a home-based business selling adaptive strollers, all terrain wheelchairs and an adapted music device for kids and adults, “to participate in life more deeply and to get outside,” she explains, adding while she has a lot going on, there’s not much money coming in. “that’s the struggle.” she’s not alone in this. estimates suggest one in four canadians—more than eight million people—are caregivers, and a growing number are experiencing health, social and financial consequences related to their caregiving roles.
just about everything lenahan does is inspired by her son and her unwavering commitment to his needs, including reaching out to other families who face similar caregiving challenges of kids with complex needs. she started a facebook support group that grew to more than a thousand members and prompted her to found a non-profit organization in 2021, bc complex kids. the aim is to share ideas, resources, participate in research, and advocate for support from the communities where people live and the healthcare systems they rely on.
“our kids all have different needs, but we share the need for financial support so that we can focus on caring for our kids without extra stress,” she says. the mental health of families is also a struggle, aggravated by a healthcare system that is difficult to navigate.
the national caregiving strategy
now her voice, and the voices of thousands of caregivers, care providers and policy experts consulted across canada are calling for the federal government to address the growing caregiver crisis. the national caregiving strategy, released today by the canadian centre for caregiving excellence (ccce), outlines policy solutions to overhaul caregiving systems, reduce financial and workplace stress, and make caregiving an integral part of canada’s health and social policies. it’s designed as the roadmap for the federal government to fulfill its commitment to developing a national caregiving strategy, as outlined in the 2024 budget.
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why is this a pressing issue? most canadians will need care or give care at some point in our lives, families are stretched thin, and people with disabilities and seniors are struggling. as well, paid care providers are leaving the sector because of stress and low wages at a tipping point when demand for personal support workers and others is going to surge.
“we’re talking about an issue that impacts one in four canadians today and will eventually impact one in two canadians. and if you’re a woman in canada today, you’re just as likely as not to be a caregiver already in 2025,” says james janeiro, ccce director of policy and government relations. he led hundreds of research consultations across the country throughout 2024 to discuss the needs of caregivers.
“needing care is huge. the baby boom is retiring. those folks tend to need more care as they age, so we’re going to need to meet them where they are and give them the support that they need,” he adds. also, people with disabilities are living longer than they ever have, but with needs that become more complex as they age.
janeiro has deep experience in “the belly of the beast” working in ontario public service on disability legislation and then with the ontario government advising on social services. he later moved to non-profit in community engagement and policy at community living toronto, focusing on housing, service improvement and income security. throughout his career, he’s been thinking about how the family is affected by caregiving demands and the policies he’s helped to create. the ccce strategy allowed him to bring those issues front and centre in work that has professional and personal significance.
“i’ve been a caregiver on and off my whole life to great grandparents. i grew up in a portuguese-speaking household, so i did a lot of the translating and helped them manage when i was younger and then also when my grandfather started his very difficult journey with dementia,” he says. when his grandfather was bed-bound at home during covid, janeiro was a big part of the physical caregiving, lifting him for transitions and helping his grandmother with care responsibilities.
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“i would get the call when the psw [personal support worker] couldn’t come,” he says. after 10 years with dementia, his grandfather died and janeiro continues to help care for his elderly grandmother with her banking, groceries and appointments. “i live about a 10-minute drive away. “i’m very close to her and, knock on wood, cognitively, she’s great. but she’s lonely.”
while the life and the lived experience of the person receiving care is dramatically different, the supports that caregivers need are fairly consistent. the consultations, along with data from recent ccce surveys, revealed a priority list of financial support, respite and home care.
caregiver tax credit and cpp reform
“half of caregivers have experienced financial stress in the last year and one in five are out of pocket about $1,000 a month because of their care responsibilities,” janeiro says. “and that’s a lot, especially between cost of living pressures and wages not going up quickly, that’s a lot of the best of times. and we can probably agree that these are not the best of times.”
one of the key initiatives is reforming the caregiver credit that gives people a non-refundable tax credit to lower their income tax bill. the vast majority of canadians don’t end up owing taxes at the end of the year, so the non-refundable tax credits don’t have a huge impact, janeiro says. the reform would convert the canada caregiver credit from non-refundable to a refundable credit of about $1,250 a year.
“that’s not a lot of money, but it’s a start. for the 20 per cent of caregivers who earn less than $20,000 a year, even another $100 a month is one more trip to the grocery store that you don’t have to stress about and it’s consistent so you can plan for it.”
a more ambitious idea is a change to the canada pension plan (cpp), which is based on workplace contributions. the more you work, the more you earn and the more you contribute, the higher your pension payment is when you retire. but many caregivers end up working significantly less because of their care responsibilities, or in many cases not working for a period of about five years. “it’s a choiceless choice that i think most of us would do. if your family needs you, you will stop working so you can do what you need to do for them.”
a more ambitious idea is a change to the canada pension plan (cpp), which is based on workplace contributions. the more you work, the more you earn and the more you contribute, the higher your pension payment is when you retire. but many caregivers end up working significantly less because of their care responsibilities, or in many cases not working for a period of about five years. “it’s a choiceless choice that i think most of us would do. if your family needs you, you will stop working so you can do what you need to do for them.”
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but that has an immediate effect on your ability to pay the rent and put groceries on the table, not just for today, but also well into your retirement.
ccce’s policy solution is when you retire and fill out your paperwork for the cpp, you show proof of being a caregiver like the caregiver credit, medical or therapy expenses, for example, and your average earnings when you were working are applied to those five years you were not working.
“not only is this doable, we can’t afford not to do it because of the volume of people coming down the demographic pipeline,” he says.
taking action to support caregivers
ccce has also launched act on care, a national awareness campaign to mobilize support among canadians, urging them to add their voices to demand federal action for caregiving policy. keying in your name and postal code generates a letter to party leaders, the minister of seniors, your sitting mp and all of the nominated candidates for the political parties in your riding.
the national caregiving strategy and the campaign are empowering for lenahan and members of bc complex kids. “i feel i have a strong purpose in my life that i certainly didn’t have before my son came along,” she says. “we are constantly pushing for government policies, but when i look around and i see all these families who are struggling, it really felt like our families were completely ignored.”
now she’s hopeful about positive change and having concerns heard at the policy discussion table. “we have a voice.”
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