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
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: 
http://www.nidus.ca/ (Nidus Personal Planning Resource Centre and Registry) and
http://www.aletmanski.com/al-etmanski/2011/09/representation-agreements-angels-in-the-architecture.html (Al Etmanski’s blog –