Let’s Get the Boring Stuff Out of the Way (a.k.a. the in’s, out’s and reality of making a Power of Attorney)

Where do I begin? Firstly, I did not anticipate the extraordinary response to my post on my WIWTY Facebook page when I sought the input/ advice from other Ontario parents facing similar barriers in accessing benefits for their adult children with disabilities. This was bittersweet discovering how widespread this problem was and realizing that wer were not alone in this unfolding nightmare. I have a whole lot to say and share and so, be prepared for loads of journal entries in the coming days and weeks as we navigate this together. Let’s start with some clarity as to why the repeated POA request when it comes to accessing services and benefits for Meredith is the latest pain in my arse.

For context and to understand the place from which I write:

Our daughter, Meredith, experienced hypoxic ischemic encephalopathy (HIE), essentially a lack of oxygen, at the time of birth and consequently suffered a massive brain injury. The first ten weeks of her life were spent at the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa and eventually she was also followed by the team at Roger Neilson Children’s Hospice, also in Ottawa, until she aged out in December of 2021. She was diagnosed with life-limiting cerebral palsy and is technology dependent (g-tube fed since birth), has epilepsy, is developmentally disabled (assessed to be at a newborn to 6-month-old level physically/ cognitively), medically fragile and followed by a neuro/ palliative team. Her life expectancy was age 7-8 however she celebrated her 22^nd birthday this past December. She is our only child and is cared for at home by my husband and I with additional 24/ 7 care by DSW’s and nurses. She was unable to attend school due to her fragility. I wrote about my reflections and hard-earned wisdom in my book, “What I Would Tell You~ One Mother’s Adventure in Medical Fragility.” (available to order HERE)

In case you missed the original post on Facebook, here it is in a nutshell:

It all started because I had unintentionally let Meredith’s health card expire and only realized it four months after her birthday had passed. And so, I walked into a local Service Ontario office to renew and lo and behold, they needed proof that Meredith had made a Power of Attorney for Personal Care (POA) and that I had the right to be renewing her card. This wasn’t the first time I ran into this. Last summer, I attempted to apply for the Canadian Dental Benefit on her behalf and was also told I could not do so as I could not produce proof of a POA. Most recently, I became aware of the Canada Disability Benefit (a monthly federal benefit ($200/ month) for low-income, working-age Canadians (18-64) with disabilities). We went to the Canada Revenue Agency (CRA) website to set up an account for her to apply but alas, we were blocked on doing so on her behalf as again, she does not have a POA.

I was certain I was missing something. As a death educator and creator/ facilitator of a death preparation course, I am quite informed about all aspects of Wills, Powers of Attorney (personal care, financial and property) and the importance of every human being making a Power of Attorney document if able to especially for personal care should they be unable to speak for themselves. Just to clarify, the Power of Attorney is a legal DOCUMENT however within the document is the name of the person (s) you would trust to speak on your behalf should you be unable to (i.e. you have a stroke and are rushed to the hospital or you are palliative and are unconscious or you have advanced dementia). But here’s the glitch, to make a Power of Attorney (POA), one must have CAPACITY.

Believing I was missing something as how could this obvious oversight exist, I reached out to our lawyer with two questions:

1. Can a person with profound cognitive/ intellectual disabilities and who is non-verbal make a Power of Attorney for Personal Care? (**please note that a person can be non-verbal and still have capacity to make a POA)
2. Can someone other than the Grantor or Principal appoint themself to be the Attorney for the Grantor or Principal (**basically: can I appoint myself to make decisions for Meredith? The answer is “no”)

To be clear, I knew the answer to these questions before contacting our lawyer and yet, I needed validation that I was not oblivious to something as how could a barrier like this exist? My lawyer confirmed what I knew:

To make a Power of Attorney whether for personal care, financial or for property, the CAPACITY to do so needs to exist. And so what does that mean?

Legally speaking, Section 45 of the Substitute Decisions Act, 1992, states that a person can give or revoke a Power of Attorney for Personal Care if the person:

1. Has the ability to UNDERSTAND whether the proposed Attorney has a genuine concern for the persons welfare and,
2. APPRECIATES that the person may need to have the proposed Attorney make decisions for the person

**** “Attorney” in this case does not refer to a lawyer but instead to the person named within the Power of Attorney document

Bear with me…..I know this is dry information BUT many of the comments in my original post reflected a gross misunderstanding of what the Power of Attorney document entails and more importantly what CAPACITY means under the law.

CAPACITY relies on a person’s ability to “understand” and “appreciate.” According to Section 45 of the Substitute Decisions Act, 1992: A person is incapable of Personal Care if the person is not able to understand information that is relevant to making a decision concerning his or her own health care, nutrition, shelter, clothing, hygiene or safety or is not able to appreciate the reasonably foreseeable consequences of a decision or lack of decision.

Therefore, if Meredith had capacity she could make a Power of Attorney for Personal Care. No one else can make one for her or on her behalf. She must be able to convey her instructions and ideally, her wishes for future healthcare. She CANNOT. She does not have the CAPACITY to understand what it is to make a legal Power of Attorney for Personal Care document or to appoint her father and I as her “attorneys.”

And for anyone who thinks you can print off the POA forms from the government website and use those, it is important to note that these are still considered legal and if you are knowingly completing them on behalf of someone who does not have capacity, they are essentially null and void. When it comes to our adult children, you can have capacity assessed and then proceed with having them make a Power of Attorney document if they can understand and appreciate what that entails. Due to the limitations of the online forms, it is highly recommended that you seek legal advice when considering a POA. If the person in your care does not have capacity, like in our case, then this is not an option.

So what is a parent to do?

Thankfully, in Ontario, if a person (any person) does not have a legal POA, a Substitute Decision-Maker (SDM) is authorized by the Health Care Consent Act to make treatment decisions if a person is mentally incapable. The hierarchy prioritizes legal appointees (Guardian/POA) first, followed by specific relatives, and finally the Public Guardian and Trustee (PGT) as a last resort. This takes care of any medical decisions should Meredith be in the hospital however, it still does not count according to the provincial and Federal government when it comes to renewing her healthcard or accessing benefits she is entitled to. My suspicion is the people employed in these agencies, are given a list of things to say and insisting on a POA is one of them when I am highly doubtful there is an understanding of what that actually means. The Service Ontario Employee felt terrible and was equally perplexed when I explained out situation. She admitted that I was not the first person to run into this “hiccup.”

When I challenge them, I am met with, “Ya, that makes no sense” but unfortunately, their hands are tied.

So, let’s untie them.

 

Stayed tuned for my next journal entries where I will discuss Guardianship (To Do or Not to Do), tips and tasks to get done before your child turns 18 and my reflections on the real root of the problem when it comes to the barriers and obstacles preventing us from accessing the benefits our adult children are entitled to. I am just getting started!

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