The Henson Trust: A Complete Guide for Ontario Autism Families

A Henson Trust is typically established within a parent's will and comes into effect upon their death. The key legal feature is absolute discretion: the trustee is not obligated to make any specific distributions to the beneficiary. This discretionary structure means ODSP cannot count the trust assets as belonging to the beneficiary, even if the beneficiary is the sole named beneficiary of the trust.

The trust can pay for a wide range of expenses that improve the beneficiary's quality of life — specialized therapies, recreational activities, technology, travel, home modifications, personal care items, and more. The trustee must exercise their discretion reasonably and in the beneficiary's best interest, but the broad flexibility is what makes Henson Trusts so valuable for autism families.

Inter vivos (living) Henson Trusts can also be established during the parents' lifetime, which allows other family members to contribute and can provide for situations where the child needs support before the parents' death.

A Henson Trust should be drafted by a lawyer experienced in Ontario disability law and estate planning. The trust document must clearly grant the trustee "absolute and unfettered discretion" over distributions — this specific language is critical for ODSP compliance. Generic trust templates from the internet typically do not contain the precise wording required.

Key decisions during setup include: selecting the trustee (and successor trustees), defining the scope of the trust's investment powers, establishing a mechanism for trustee replacement, and specifying what happens to remaining trust assets when the beneficiary dies (the "remainder" provision).

Ontario does not publish a standard cost for setting up a Henson Trust. Ask an Ontario disability-estate law firm for a written quote that lists the work and all fees before you hire the firm.

The most dangerous mistake is language that gives the beneficiary any right to demand distributions. Even a clause stating the trustee "shall provide for the beneficiary's basic needs" can convert the trust into one that ODSP counts as an asset. The discretion must be absolute and unfettered.

Other common errors include failing to name successor trustees, missing a trustee-replacement process, and not coordinating the trust with RDSP and insurance beneficiary designations. If no trustee can act, the trust document and Ontario law decide the next step.

Families should review their Henson Trust after major family, trustee, tax, benefit-rule, or needs changes. Ask an Ontario disability-estate lawyer what review schedule fits the trust.