When you are planning for the long-term care and financial security of a loved one with a disability, one decision often influences everything else: who will step into your shoes to make decisions when you no longer can?
When a trust is created for a loved one with a disability, whether during your lifetime or through your Will, the responsibility for decision-making falls to the appointed trustee. In many cases, families establish a discretionary Henson Trust to help preserve their loved one’s access to government benefits. The trustee is then responsible for managing the trust assets, making decisions about distributions and ensuring that funds are used in a way that supports the disabled person’s needs over time without compromising those benefits. This role extends well beyond financial administration. It involves judgment, timing and an understanding of how decisions interact with complex systems and programs.
While the trustee often shoulders a considerable amount of responsibility, families may also be required to make a similar decision with respect to the appointment of a representative under Representation Agreements, or court-appointed Committees or Adult Guardians and Trustees. While the titles and legal frameworks differ across Canada, the underlying responsibilities are similar. Each of these roles may involve managing finances, navigating legislative systems or making decisions that affect daily life, independence and dignity. Whether considering the appointment of a trustee or other decision-maker, the central question remains the same.
What makes a good trustee?
Most people who have gone through the estate or trust planning process before should be familiar with the usual guidance. Trust is important. Capacity matters. Communication is key. These points are true, but it doesn’t stop there. A good trustee must meet all four standards:
- They must be trustworthy.
- They must have the ability to manage money.
- They must be willing to accept the role when the time comes.
- They must act with appropriate timeliness rather than hesitation.
In practice, finding someone who checks all four boxes can be difficult.
To further complicate this decision, there is an added requirement when planning for someone with a disability. The trustee should know the person at the centre of the trust or at least understand their needs well enough to make decisions that reflect their personality, preferences and long-term goals. Money management alone is not enough. This role is not about maximizing returns at all costs. It is about sustaining dignity, stability and opportunity within systems that can be complex and slow.
In many cases, particularly where a discretionary Henson trust is used to protect access to government benefits, the trustee’s judgment directly shapes how effectively those protections are maintained.
Consider having multiple trustees
Some families benefit from a team approach. Appointing co-trustees can create natural oversight. One person may provide practical knowledge of the individual’s day-to-day life. Another may bring financial literacy or professional experience. The benefit is accountability and balance. The trade-off is efficiency. Co-trustees must communicate, agree, and coordinate. Decisions can take longer, especially when emotions or geography are factors. There is no one-size-fits-all solution.
Professional advisors can also play a meaningful role. Accountants, lawyers, financial planners and social workers can help trustees navigate reporting requirements, government benefits, among other supports. A trustee does not need to know everything. They need to know when to ask for help. In many cases, the most effective trustee is not the person with the greatest expertise, but the person most willing to assemble the right expertise around them.
Because these arrangements often last for decades, some parents worry about choosing someone older. Longevity matters, but so does judgment. Strong candidates should not be ruled out simply because they are older. What matters more is reliability, capacity and willingness to act. Backups are essential. Naming an alternate trustee or representative is not pessimistic, it is prudent. Additional layers of succession often reduce stress for everyone involved.
Some families consider professional trust companies. A corporate trustee can offer continuity and administrative expertise, particularly in managing compliance and reporting. That can be reassuring. At the same time, institutional decision-making can feel impersonal. If you appoint a trust company, consider providing clear guidance about how decisions should be made. You might name a trusted family member as co-trustee or prepare a side letter encouraging consultation with someone who knows your loved one well. Legal authority defines what a trustee can do, but judgment and personal understanding often determine how those decisions are made in practice.
Address risk with transparency
Trustees are generally entitled to compensation, whether set out in the governing document or determined by provincial rules. Many families assume a sibling or relative will not want payment. Sometimes that is true. Sometimes it is not. Clarity at the outset can prevent misunderstandings later. Compensation recognizes that this is real work, often carried out over many years and sometimes involving travel, administration and difficult decisions.
Any time someone has control over money, the risk for misuse exists. Most trustees act in good faith, but safeguards matter. Oversight mechanisms can include regular accounting, including written accounts to beneficiaries or other interested parties, co-trustee structures, independent advisers or the ability to request reviews. Transparency is not a sign of distrust. It is a structural protection that supports everyone involved.
In the end, appointing a trustee is not about finding a perfect person. It is about alignment. The right trustee understands your loved one, respects their individuality, manages resources competently and is willing to serve over time. They seek advice when needed, act with care and consistency and recognize that their role is both practical and deeply personal.
When parents think about the future, they often focus on their eventual absence. That can feel unsettling. Choosing a trustee is also an act of optimism. It reflects a belief that, with thoughtful planning and clear guidance, someone else can step forward to carry that responsibility with care. Trust, in this context, is a deliberate decision made in advance with clarity and intention to ensure continuity, dignity and support for years to come.
Contributor:
Max S.J. Shilleto, Lawyer, Lawson Lundell LLP
Please note that all views and opinions expressed by contributors should be recognized as theirs alone, and do not necessarily reflect the official policies or position of Plan Institute
