Some Thoughts on the Proposed Adult Capacity and Decision-Making Act

As I have yet to make good on my promise to share my thoughts on Nova Scotia's proposed new adult guardianship legislation, the Adult Capacity and Decision-Making Act, while you wait, I humbly offer you my interview on CBC's Main Street Program.

Let's Talk Landon WebbGuardianship ~ Part IV

Long, long ago in a galaxy far, far away (in other words, before I had a child with a disability), I was involved with grassroots political lobbying for children in third world countries. Doing that work, I became very attached to a quote from Stephen Lewis, then Canada's Ambassador to the United Nations, to the effect that eventually the day would come would societies would be judged not by their industrial or economic output, but by how they treated their most vulnerable citizens.

I approach the issue of supported decision making as both a parent and a disability lawyer. I've read a fair bit of what Michael Bach, (Vice President of the CACL) and others have written on exactly how supported decision making would work. I found it fascinating. But, quite frankly, I also found some of it quite scary.

I was particularly struck by a response given to a statement made by the Ontario Select Committee on Mental Health and Addictions that the "right to autonomy must be balanced with the right to be well". Part of CACL's response to that statement was that there is no recognized right to be well in domestic or international law.

Is this the path we want to go down? Really?

At any rate, I beg to differ - Section 7 of the Canadian Charter of Rights and Freedoms guarantees all of us the right to "life, liberty and security of the person". I would have no trouble arguing that that includes a right to be well. I recall listening to an amazing presentation by Dr. Condoluci at a CACL Conference a few years back, where he spoke of research showing that cross-culturally parents want their children to be healthy, happy and have longevity. I rest my case. For now anyway.

Please understand. I love the concept of supported decision making. In the abstract. But my concern is exactly how we are to balance the right to autonomy (that you, I and everyone else demands and deserves) with the duty to protect where decision-making abilities are limited, needed supports are lacking or people are vulnerable to abuse or neglect.

I am the first to admit that there are huge problems with the other substitute decision making options available, particularly guardianship. You might just have been living under a rock if you haven't come to realize over the course of the last several months that Nova Scotia has what is likely the most archaic, restrictive guardianship system in the country.

Sadly, we currently have a system that labels individuals as competent or incompetent without recognizing that people can be competent in some matters and less so in others. It's a very blunt instrument that doesn't allow for supported decision making and reinforces the perception that people with intellectual disabilities don't have capacity. It's a winner take all, one size most definitely doesn't fit all, take it or leave it kind of system. Frankly, it leaves a LOT to be desired. I am happy to say that, fortunately, that should soon change ("soon" being a relative term, of course).

As I said, I approach the issue of supported decision making from the perspective of both a parent and a lawyer. And the real question for me is whether and how much it is acceptable for society to act to protect individuals with intellectual disabilities.

Let's Talk Landon Webb Guardianship ~ Part III

Does Nova Scotia's guardianship legislation needs a MAJOR overhaul? Absolutely.

Is it appropriate to throw out the baby with the bathwater and remove the option of guardianship completely from provincial law? While some in the disability community might respond in the affirmative to that question, you will find me on the side of those strongly shaking their heads, NO.

I'm not naive. I realize that many take the view that guardianship should never be a legal option because it “discriminates”against challenged individuals and takes away their right to make choices
for themselves.

In fact, the Canadian Association of Community Living (CACL) has characterized guardianship as "an ancient mechanism that was constructed without consulting people with disabilities" and takes the position that "supported decision-making" is not only preferable to guardianship, but given that "guardianship laws assume that some people do not have the capacity to make legally binding decisions" has invited us to "adopt a paradigm shift in which everyone has an equal legal capacity, without distinction based on disability."


What is Supported Decision Making (SDM)?
SDM means that a person can accept help in making decisions without relinquishing the right to make those decisions. With SDM, freedom of choice is never violated. The wisdom of a person’s choices is not challenged, allowing everyone the dignity of risk.

In theory, SDM helps a person to understand information and make decisions based on his or her own preferences. The feeling is that while guardianship laws theoretically protect people with disabilities from abuse, in practice they open the door to abuse. Some believe that guardianship facilitates institutionalization; the guardian can easily give consent even when the person opposes being institutionalized. One decision by the authorities and a person loses the right to decide where to live, loses the right to vote, the right to choose who to marry, the right to start a business. This results in living in a humiliating and degrading way.

We are told that the fact that others might view a decision as foolish or ill-advised doesn't mean a person in incompetent. The courts speak of the right to be KNOWINGLY foolish and the right to VOLUNTARILY assume risks; some case law speaks of the right to live life on the edge. Which is all well and good.

Let me say that I agree with a lot of the concerns set out above. In fact, speaking only as a parent, I love the concept of SDM in the abstract. My adult child being given that the information she needs to make responsible adult decisions.

What's not to love?

* In Part IV, I will explain my concerns with SDM in the real world.

Decisions About Health and Personal Care: What does it take to be legally capable?

For those interested concerned with issues around "consent" (and that should be all of us), might I suggest the recent presentation given by Professor Sheila Wildeman, a law professor at the Schullich School of Law (aka Dalhousie Law School).

Prof. Wildeman has a deep understanding of the issues involved under the Incompetent Persons Act and other relevant legislation in Nova Scotia. Beginning with the now well-known story of Jenny Hatch (the young American woman with Down Syndrome who successfully fought her parents' guardianship application), Professor Wildeman goes on to examine the current state of the law surrounding "legal capacity" in Nova Scotia in regards to guardianship and health and personal care decisions.

But she doesn't just offer a useful tour through the current state of the law - Professor Wildeman does an excellent job of setting out the fundamental values that are at stake here and explaining the differences between substitute decision-making regimes (such as guardianship) and supported decision-making (one of the newest buzz terms in the disability community).

Yes, the lecture is lengthy but I highly recommend it for anyone who wants to get a real grasp on these issues. Because, really, without a firm grasp on these issues, how we can expect to advocate effectively for ourselves and our loved ones?





On a related note, I present to you ARCH's analysis of the recent Supreme Court of Canada decision in Cuthbertson v. Rasouli, 2013 SCC 53.

In Cuthberton, the SCC was asked to examine the process that the law requires when an incapable person is unable to provide consent or refusal in situations involving life support.  Decided under Ontario's Health Care Consent Act, the Court concluded that “treatment” under this Act extended to withdrawal of life support, contrary to the arguments of the doctors.

A Voice in the Wilderness

Following is a copy of my presenataion at the recent CACL Conference, part of multi-person session on supported decision making. As the above title implies, I was the sole person questoning how well this concept might actually work.

A good discussion followed in which some of concerns were discussed and explained. Some to my satisfaction and others less so. Such is life.

Long, long ago in a galaxy far, far away (in other words, before I had a child with a disability), I was involved with grassroots political lobbying for children in third world countries. Doing that work, I became very attached to a quote from Stephen Lewis, Canada's Ambassador to the United Nations at the time, to the effect that the day would come would societies would be judged not by their industrial or economic output, but by how they treated their most vulnerable citizens.

I approach the issue of supported decision making primarily as a mother. A mother with a legal background, a mother who walks both in the field of disability and law, but a mother.

I've tried to read some of what Michael [Ed. Michael Bach - Vice President of CACL) and others have written on exactly how supported decision making would work. I say tried, not due to lack of interest, but simply due to lack of time. Because I found it fascinating. But, quite frankly, I also found some of it scary.

I was particularly struck by the response to a statement made by the Ontario Select Committee on Mental Health and Addictions' statement that the "right to autonomy must be balanced with the right to be well". Part of the response to that statement was that there is no recognized right to be well in domestic or international law.

I beg to differ - Section 7 of the Canadian Charter of Rights and Freedoms guarantees all of us the right to "life, liberty and security of the person". I would have no trouble arguing that that includes a right to be well. After all, I listened to Dr. Condoluci speak yesterday of research showing that cross-culturally parents want their children to be healthy, happy and have longevity. I rest my case. For now anyway.

I love the concept of supported decision making. In the abstract. But my concern is exactly how we are to balance the right to autonomy (that you, I and everyone else at this Conference demands and deserves) with the duty to protect where decision-making abilities are limited or where they are lacking needed supports or where people are vulnerable to abuse or neglect.

Where Will You Go ... What Will You Discover?

Wow ... I was updating the "Places To Be" section in the sidebar and was amazed pleasantly surprised at how much is happening in the next little while.  So much so, in fact, that I thought it might just be best to give it a little more visibility and post about it right here.

You might think this month is pretty well shot but don't be fooled, there's still four activities left for this last week of September. 

Besides the regularly occurring Social Night for Persons with Disabilities every Tuesday @ 4:00 and the Mental Health for All Coffee House running Saturday afternoons from 1:00 - 4:00 from now until December 3rd (both in Halifax), Ken Pope, LLB, TEP, Henson Trust Specialist is offering a live videoconference/webcast on Disabilities and Estate Planning this Wednesday, Sept. 28th from 10:00 am to 12:30 pm.

Topics to be discussed include ODSP eligibility and benefits, exempt asset arrangements, using and back filing the disability and caregiver tax credits, Registered Disability Savings Plans, legal guardianship and Powers of Attorney, Wills and Henson Trust arrangements, funding trusts with life insurance, RRSP rollovers to adult children with disabilities, Lifetime Benefits Trusts to receive RRSPs for children as parallel trusts, and planned giving, bequests, charitable remainder gifts and minimization of income tax on death from RRSPs.

Also on Wednesday (and yes, you can do both because this just happens to be in the evening), Nova Scotia Community College Disability Services is offering an Information Session for parents, teachers, guidance counsellors and students. The point of the session is to answer questions about the transition from high school to college for learners with disabilities including those who are on an Individualized Program Plans. Issues that will be explored include how to help someone with a disability apply to college, whether having an IPP makes a difference when it comes to applying to community college, what can be done now to get ready for college in the Fall, what resources are available at NSSC that students might find helpful and what funding is available for students with disabilities in post secondary education. And, of course, often the most pressing question for parents; "I know how to support my child in school - what's going to change now s/he is going to college?".

And that's just for September.

Live and in Person ... aka Shameless Self Promotion

And if that's not enough to scare you away, nothing will.

But just in case anyone is still interested, I will be giving a presentation on "Legal Capacity and Supported Decision Making" (aka "Guardianship - Do I Need It and How Can I Get it Without Losing an Arm and a Leg?") next Saturday, April 17th, 2010 @ 10:30 at the Alderney Gate Public Library, 60 Alderney Drive, Dartmouth.

The presentation is courtesy of the HACL so I thank them for that.

If you're even a semi-regular reader of this blawg, you will know the general direction in which I will be headed with this. In which case, what you just might find more interesting novel than anything I have to say is the first hand experience of a fellow parent who recently obtained guardianship of her son without a lawyer.

So I hope to see you there. Bring your thoughts and concerns. Ask your questions. We will do the best we can.

Update: And yeah, that Guardianship package, still a work in progress. But it is progressing. I still have another week, right?

Update II: Apparently registration is filling up fast. Which might have been one thing I forgot to mention - you can find registration details here.