Friday 17 May 2013

Future Planning When Capacity is An Issue: A New Deal

In my last blog post, I wrote about the messy business of overriding bad decisions that vulnerable loved ones sometimes make. The potential for anything from hurt feelings to fisticuffs is clear and present when families disagree with a vulnerable relative on treatment plans, housing solutions, care needs or any other matters of daily living.  When an adult loved one is deemed to be lacking ‘capacity’ or the ability to make important life decisions in his or her own best interests, there are usually only a few legal alternatives and none of them are ideal – at least as far as the vulnerable person is concerned. 

In most places there are two sets of tools: one set that is available to people who are deemed to have legal capacity and one set that is used when people are found not to have legal capacity. Furthermore, there are tools available for financial decisions and tools available for health and personal care decisions. Powers of Attorney enable people to designate another person to handle their financial affairs. A person must have capacity to sign over Power of Attorney.  We have Powers of Attorney for my mother – one for finances and one for personal care decisions.  We also have a separate ‘bank’ Power of Attorney that allows my sister and I to handle Mom’s banking at her branch when she is unable to go to the bank herself.  For Nicholas, we have a Power of Attorney that he signed over to us and we used it to open his bank account when we moved from the UK to Canada in 2011. 

Personal Directives, sometimes called Advance Care Directives are used to appoint another person to make health and personal care decisions. Personal Directives might have different names in different jurisdictions. Personal Directives can also only be written if a person is deemed to have capacity. They are usually designed to be used when the person can no longer give consent for treatment or care.

Adult Guardianship is used in the case of adult disability to appoint a substitute decision-maker when a person is found not to have capacity and needs someone to manage their financial or legal affairs or to make decisions about their health or personal care. Adult Guardians are also sometimes called Committee, Trustee, Curator. Generally, Guardians have full authority to make decisions on behalf of the person. In some places, such as Ontario (Canada), Guardians are granted powers only in areas in which there is a need for substitute decision-making and there is an expectation that they consult the person to determine their preferences and wishes.  Under adult guardianship procedures, if an individual is declared incompetent/incapable, they are legally a nonperson.

All the really revolutionary ideas in social care have come from families.  Strategies to create legal frameworks that support loving relationships and enshrine the moral personhood of vulnerable people are tricky to design, but a group of families and professionals did it in British Columbia, Canada.  Here’s how:

Supported decision making is different from substitute decision making. Substitute decision making is when someone takes the place of an individual who is determined incapable of managing their affairs or making decisions. The substitute decision maker acts on behalf of and in the best interests of the individual. This is the approach reflected in Power of Attorney and health care proxy decision making.  The trick for policy-makers was how to create a legal framework for supported decision making.  In BC, they did it with the The Representation Agreement Act.

No one writes with more authority about this issue than my colleague, Al Etmanski.  Al is a Canadian change-maker with international impact.  He was a prime mover in this and many other pieces of legislation in BC supporting vulnerable citizens and their families.  

Al describes the BC policy this way: 
The Representation Agreement Act of British Columbia was created from a philosophy that views people as capable even if they cannot manage their own affairs or give informed consent. A representative(s)is always listening to the individual’s communication (all forms of communication are recognized) to enable them to participate in decision making. A representative not only preserves an individual’s selfdetermination, they strive to enhance it. A representative does not take the place of the individual, they act as a bridge to help third parties know and interact with the individual.

Supported decision making is not just support with decision making. It is a process of supporting and celebrating the individual’s capability and identity – their personhood. The Representation Agreement Act was created to provide an alternative to adult guardianship.

The Act was created with the disability community in mind, but it serves older people who suffer from dementia as well.  It can also be useful in some cases of mental illness.  It's a great piece of legislation that assumes personhood can come in many forms, and that everyone has a right to be involved in decisions that effect their own life.

For more information on the Representation Agreement of British Columbia and its impact on both adults with disabilities and elderly citizens with Alzheimer's or dementia, see: (Nidus Personal Planning Resource Centre and Registry) and (Al Etmanski's blog - 

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