Canada’s quiet crisis
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.
Incredibly, 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 caregiver legislation that prioritizes spouses and parents. Canada benefits from this unpaid work while refusing to count it.
This invisibility has consequences. When people with disabilities talk about choosing medical assistance in dying as a solution to their loneliness, their lack of services or their fears of being a burden, the public response is disturbingly muted. We rarely see policymakers ask why a wealthy country allows these conditions to persist in the first place.
A system that leaves people feeling like a burden, and families feeling trapped, is not neutral. In many communities and cultures, sibling caregiving is treated as an unquestionable obligation. Systems exploit this reality, assuming infinite family capacity while offering minimal support.
Resilience becomes a cover for neglect. Duty becomes a substitute for policy.
The long-term impacts are increasing. 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.
First, federal programs must formally recognize siblings as caregivers. Recognition determines access to income supports, leave policies and planning resources, benefits from which we are currently excluded. Recognition would also allow financial renumeration 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.
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.
Photo courtesy of DepositPhotos
