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Disability Planning 101

I am Not Immortal: Decision Making & Legal Planning Part I

There’s an old adage: you don’t know what you don’t know. I find this to be the case when clients first come to see me. They believe all that is needed is a Henson Trust in their Will. While the creation of a trust in the Will is of primary importance to parents with children who have a disability, there are other issues to consider. One such matter might be appointing a substitute decision maker for a loved one with a disability.

Before I go any further I would like to briefly address the notion of supported decision making, which acknowledges the ability of the individual to make their own decisions when provided with appropriate support. Supported decision making focuses on what the individual wants. While this approach is certainly a good one, unfortunately, the Substitute Decisions Act currently does not recognize that type of decision making. However, in recent years, the growing acceptance of a social model of disability and focus on human rights, calls for new consideration as to what alternative methods of decision making might include. The final report of the Law Commission of Ontario on Legal Capacity, Decision-making and Guardianship advocates for reform in line with the Convention on the Rights of Persons with Disabilities where supported decision-making is preferred. Currently, I’m not aware of any legislation that is moving Ontario towards a more sensitive approach.

Often parents do not realize that they have no legal right to make most decisions for their son or daughter after a certain age. And there is good reason for this: parents are treated by physicians, social service agencies, CRA and financial institutions as de facto decision makers. During the initial interview with the client, my first objective is to learn as much as possible about their loved one such as the level of independence, how they spend their days, where are they living, how much support they need and most importantly who is making financial and personal care decisions with, or on behalf of, their loved one.

I recall a doctor’s visit with my daughter (who has a developmental disability) when she turned 16. The doctor told me that legally my daughter was entitled to meet with the her alone, leaving me in the waiting room! Thankfully that did not happen; the doctor permitted me to stay in the examination room so that I could be an active participant and decision maker in my daughter’s routine health care. While I appreciated the doctor’s benevolence, I left the appointment somewhat concerned that I may not be allowed in the examination room the next time.

The same is true when dealing with financial matters. I file my daughter’s tax return yearly. (I’m thankful for the anonymity of the internet.) Yet it may only be a matter of time when the CRA will need to speak with her regarding the tax return. I’ve met clients who were at their wits’ end as their child could not respond to CRA’s questions, facing years of aggravation to address as much as a minor error.

I give these examples when I speaking to groups regarding the importance of appointing a substitute decision maker for their son or daughter. But as one parent aptly put it, why bother having a substitute decision maker when there are no issues. She was right; banks, doctors, and support agencies permit the parent to make the decision rather than asking to see a Power of Attorney or Guardianship Order.

But we must remember that we are not immortal. We have no way of knowing if other family members or caregivers will be given the same unofficial decision-making authority.  So planning for the day when we will not be here brings certainty, lessening of load of things we do not know. 

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