opinion: canada’s quiet crisis in sibling caregiving
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sibling caregivers remain invisible in policy discussions. canada benefits from this unpaid work while refusing to count it.
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canada is propping up its disability system on the unpaid labour of siblings, and pretending this is not a crisis. we say this both as researchers focusing on sibling experiences and as siblings ourselves.
as people with intellectual disabilities and autism live longer, families are expected to absorb the gap between need and support. when parents age or die, the responsibility does not disappear. it shifts — almost automatically — to brothers and sisters. this transfer of care is rarely planned, rarely supported and almost never acknowledged by public policy.
sibling caregiving is not incidental. it is structural. canada’s disability supports are designed around the assumption that someone in the family will step in. and when that someone is a sibling, their labour is treated as natural, not as something that deserves recognition, compensation or relief.
unlike parents, we siblings did not choose this role. yet we face the same social pressures to comply. refusal is framed as abandonment. when the system falls short, family is expected to step up.
and we do step up.
but that commitment comes with a high price. we may limit our careers, forgo income or delay or abandon plans to have children. many of us live with anxiety about housing stability, medical emergencies and so on. we wonder about what will happen when our parents, or we, are no longer able to provide care.
and yet, sibling caregivers remain invisible in policy discussions. our lost productivity is excluded from economic analysis. our health impacts are dismissed as personal issues. our labour is absent from federal caregiver legislation that prioritizes spouses and parents. canada benefits from this unpaid work while refusing to count it.
resilience becomes a cover for neglect. duty becomes a substitute for policy.
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in our research and from our own personal experience as sibling caregivers, we have seen how siblings providing care for decades experience higher rates of depression, chronic illness and social isolation. many of the people we interviewed described interactions with social services as dehumanizing, marked by gatekeeping, endless reassessments and suspicion rather than support.
this is not a safety net. we cannot continue to talk about dignity, inclusion and autonomy while outsourcing care to invisible caregivers. we need a different approach.
several provinces have taken steps to create provincial legislation recognizing the role of familial caregivers. quebec is slightly ahead of the others, having explicitly recognized sibling caregivers in legislation. however, the policy language guiding implementation is somewhat ambiguous and the processes for accessing support are complicated, indicating a need for further action.
what else can be done?
first, federal programs must formally recognize siblings as caregivers. recognition determines access to income supports, leave policies and planning resources. recognition would also allow financial remuneration to sibling caregivers for providing housing and case management.
second, disability supports must be strong enough to stand without family collapse. housing, income security and community-based care cannot depend on unpaid sacrifice to function.
public responsibility must mean public investment. at the federal level, this means improving available tax credits and expanding income replacement options for caregivers. it also means working with provinces and territories to ensure alignment between federal policies and supports and provincial legislation and programs.
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third, service navigation must remove barriers and focus on supporting those who ask for help. complexity and gatekeeping are effective barriers to accessing needed supports.
finally, the time for help is not when families are in crisis. we need compassionate and realistic approaches for early interventions and guidance regarding future needs and decisions.
our research confirms what caregivers have known for some time: we are missing the political will to act. sibling caregivers are not a backup plan. we are not an unlimited resource. and we are not invisible by choice.
canada’s disability system is being held together by quiet sacrifice. it is time to stop relying on it and start taking responsibility.
pamela block is a professor of socio-cultural anthropology at western university. helen ries is co-founder of siblings canada.
this article was originally published in the montreal gazette on april 2, 2026.
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