Parents who have supported a child with intellectual disabilities can find themselves shut out when the legal system no longer recognizes their authority.FG Trade/iStockPhoto / Getty Images
A child’s 18th or 19th birthday is generally a milestone. A step toward independence. A moment to celebrate.
But for families of young adults with intellectual disabilities, those who struggle to understand and navigate complex systems, the celebrations can be clouded by a knowledge that the legal systems that once allowed parents to help may no longer recognize their authority.
Parents who have spent years supporting a child with intellectual disabilities – helping manage appointments, co-ordinating care, handling finances – can suddenly find themselves shut out when the adult child still needs their help.
Nothing about their loved one has changed overnight. But the rules have.
Across most of Canada, reaching the age of majority creates an invisible barrier for parents. One day, they can help their child to navigate the rules and mechanics of government and financial systems, including tax authorities, disability benefit programs and banking. The next, they may be required to obtain an expensive and time-consuming legal authority to do the same things. Depending on the province and complexity, these court applications can cost tens of thousands of dollars.
The problem is rooted in how our laws understand capacity. In many provinces, a person is treated as either capable or incapable, particularly when financial decisions are involved. There is very little middle ground.
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If someone is considered capable, they are expected to act independently by the time they reach the age of majority. If they are considered incapable, the solution is often a court application to have a guardian or trustee appointed to make all decisions on their behalf.
That might be the appropriate solution in some cases. But this either/or formula does not reflect the reality of many people living with intellectual disabilities, where capacity can be partial, evolving or depend on the type of decision being made.
Someone living with intellectual disabilities may be fully capable of making personal choices – where to live, what to eat or who to spend time with – but still need help managing money, dealing with financial and government institutions or understanding complex documents.
What adults with intellectual disabilities often need is support, not substitution. Yet the law offers few practical options to provide that support without crossing a legal threshold that often removes autonomy altogether.
This gap is felt most acutely when it comes to finances. Many Canadians appoint a trusted person to manage financial affairs under an enduring power of attorney before they lose capacity. But this option is only available to those who meet the legal threshold for capacity when they sign. For some persons with intellectual disabilities, that moment of capacity may never occur.
Without a power of attorney, financial institutions often require formal legal authority. They are understandably cautious. The result is that families can often help with care, but not with the financial decisions – paying rent, managing benefits, handling expenses – that make care possible.
The alternative is to seek a court order. That process typically involves medical testing, legal fees and months of delay. It can cost thousands of dollars and requires families to formally prove that their loved one lacks capacity. It’s a blunt-force solution to solve a nuanced issue.
It also places families in an impossible position. To help, they must ask the legal system to take decision making autonomy away from their loved one.
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Fortunately, there are better models that already exist in some Canadian provinces.
British Columbia allows adults with reduced capacity to appoint trusted people to assist with decisions, including routine financial matters, without going to court. This approach reflects a more realistic understanding of capacity and recognizes that support can exist without stripping autonomy.
Some challenges remain. Front-line representatives of financial institutions and government agencies are not always trained to understand or recognize the legal authority given under these representation agreements. But the framework itself points in the right direction by allowing families to provide support before they reach a crisis point.
Other provinces should learn from this example. Capacity and adult guardianship laws are provincial responsibilities, and provincial governments can modernize them by creating accessible legal tools that don’t require the courts for supported and shared decision‑making – including in routine financial matters.
Banks and government agencies must also provide proper training to recognize these arrangements, so legally appointed representatives are not turned away at the counter.
This is not about lowering safeguards. The risks of abuse and exploitation are real. Adults with intellectual disabilities can be financially manipulated, pressured into decisions or be taken advantage of.
But protecting people does not require stripping them of autonomy. Support should not require court applications, medical assessments or costly legal proceedings.
Provinces can act now by modernizing their legislation so adults with intellectual disabilities can receive meaningful support – particularly for routine financial decisions – without sacrificing autonomy. We must do better.
Max Shilleto is an estate planning lawyer and disability advocate in Vancouver.