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John O’Brien talks with Jerome Nicol,
the Buddies/Supports Coordinator with the Saskatoon branch of the
SACL. The Association provides supports for children and teens who
are in Parkridge Centre and in foster care. O’Brien and Nicol
spoke following a morning session in which O’Brien met with
members of the Provincial Training Committee about person-centred
services. It was one stop of many in the province, including workshops
in Regina, Lumsden and Saskatoon. Many of O’Brien’s
publications are available on loan from the SACL Resource Centre.
Co-decision precedent allows step back from total guardianship
Saskatchewan’s past adult guardianship legislation was more
often than not a restrictive “all or nothing, black or white”
tool that stripped people with disabilities of their potential to
make any choices and decisions about their own lives. Since the
Adult Guardianship Act was changed in 2001 to include provision
for “co-decision-making,” there is more likelihood that
people with disabilities can retain some of their autonomy while
enjoying supports to help with issues perhaps too complex to handle
alone. Cathy Knox, a barrister with Halyk Knox, was recently involved
with SACL in a precedent-setting case that established co-decision
making as a desirable and legitimate alternative to complete guardianship.
“The old legislation was restrictive almost to a point of
being punitive,” says Knox. “It was based on the overriding
presumption that we need to protect this individual from himself
and those around him who are going to exploit him.”
The SACL has been involved as an intervenor in cases where it was
felt complete guardianship was not necessary or appropriate. In
some, Knox said it was important that the parent or other individual
applying for guardianship understand that when SACL, as an advocate,
learns of these applications, it has an obligation to see if such
complete removal of rights is in any way warranted. Usually, an
alternative can be found. In rare cases, guardianship is appropriate.
“Sometimes we deal with families who feel quite offended that
we would question what they’re doing and sometimes those fears
are stoked by others, sometimes lawyers and courts, who share the
belief that people with disabilities are incapable of making appropriate
decisions about their lives,” says Knox. “We have to
talk our way through those situations and quite often, it’s
a matter of lawyers and families getting a better understanding
of the alternatives. It’s still a novelty for a parent who
considers their adult son or daughter to be their child to realize
there’s an outside agency who has a legitimate right to ask
questions. They are not doing it as an enemy, but as someone with
an interest in what is happening to that adult.”
To avoid confrontations, a way to familiarize parents of people
with intellectual disabilities about the role SACL can play is important.
The fact that the Association is not automatically adverse to the
position of the parents can take some discussion to appreciate.
The SACL is there to support, educate and explain alternatives to
the traditional guardianship. There must be a recognition that no
matter how good the intentions of one parent, for example, who has
nothing but the best in mind for her child, there are also parents
out there who may have other motivations. The SACL needs to be in
a position to make sure the adult son or daughter is supported properly.
“A perfect example of this is the case where we had a precedent-setting
co-decision-making order put in place because a young woman with
a disability was caught between two warring parents who had never
gotten past the angst and anger of their divorce,” explains
Knox. “This woman was literally pulled back and forth between
these parents. The only piece they had left to fight over was the
daughter and neither of them would have been a suitable, reasonable
guardian because it would mean exclusion of the other parent. There
was no question that each parent loved the daughter, but she was
caught in the middle. And it was clear she had her own opinions
about the situation.”
Had there been more information available about alternatives to
guardianship, perhaps this case would have never gone to court,
says Knox. A family member ultimately came forward to accept responsibility
as a co-decision maker and the outcome has been positive. But a
better understanding of the alternatives to complete guardianship
can save a lot of unnecessary anxiety and court time and cost.
Since the amendments were made, there are now specific principles
in place that guide the interpretation and application of the Adult
Guardianship and Co-Decision-Making Act:
- Adults are entitled to have their best interests given paramount
consideration;
- Adults are entitled to be presumed to have capacity, unless
the contrary is demonstrated;
- Adults are entitled to choose the manner in which they live
and to accept or refuse support, assistance or protection, as
long as they do not harm themselves or others and have the capacity
to make decisions about those matters;
- Adults are entitled to receive the most effective, but the least
restrictive and intrusive, form of support, assistance or protection,
when they are unable to care for themselves or their estates;
- Adults are entitled to be informed about and, to the best of
their ability, participate in, decisions affecting them.
“The old Act really was an all or nothing proposition,”
says Knox. “You were either incompetent and needed guardianship
or you didn’t. Now there is a measure that allows respect
for the individual and allows for supported decision-making. That
interim step of co-decision-making is very important. There are
very few individuals who don’t have some positive perception
of what’s appropriate, necessary and right for them and there’s
a psychological advantage of being involved in and consulted about
your life.”
The conflict in co-decision-making comes into play when someone
wants to do “something that’s really wacky,” notes
Knox. “But this gives someone named as a co-decision-maker
the ability to talk it through, to discuss consequences and so on.
There’s a bit of an advisory role and that’s an important
piece in respecting a person’s dignity.”
An important aspect of the revamped legislation is that it is not
only in place for people with intellectual disabilities. It has
wider reaching application to others.
“This is Legislation for your mother when she’s in the
early stages of senility, when Alzheimer’s is setting in.
It’s for your father when he’s just getting to a stage
where it’s really hard for him to handle all of his affairs.
Co-decision-making allows this person to maintain a degree of dignity
and self-respect, but allows for some help in making decisions to
avoid the bad outcomes of poorly thought-out decisions,” says
Knox.
Parents of people with intellectual disabilities who may have opted
for total guardianship before can now make an application for the
co-decision-making order. This order contemplates an involvement
in making decisions as an advisor with the legal authority to give
support. Then, if good advice is being rejected and there’s
a good chance of adverse outcomes, there is some legal authority
to put the brakes on.
“I think the most important element of all this is that it
allows a step back from that presumption of incompetence. It allows
for the understanding that the person may need some support, but
is very capable of making many decisions about his own life. The
nice thing about the legislation is that it recognizes the role
of advocacy organizations such as SACL and says there is to be consultation.
Notice from the Public Guardian’s office used to be given
only when there was a Property Guardian application. Now, that that
has been extended so that notice is also given when there is an
application for a Personal Guardian as well. The SACL is one of
a very few organizations named in the Act to receive notices.
“The Public Guardian is a very fair-minded individual,”
says Knox, “and he suggested that amendment be made once he
realized there was a shortfall in the legislation. The government
very quickly agreed that there was a deficiency in the system. This
particular case gave us a real good look at how the new legislation
can work,” explained Knox. “In the face of some acrimonious
and bitter battles, there is an ability there to find a solution
that’s in the best interests of the individual that’s
still short of taking away their decision-making power. The young
woman at the centre of this case is a person who responds very positively
to being treated with respect. Her life is full of experiences now
that she wants. Now she’s totally uninvolved in the escapades
of the divorce with the help of her co-decision-maker and it’s
so much healthier for her.”
Knox believes these legal changes are reflective of the sociological
evolution with respect to people with disabilities. Society has
moved from the model of presumption of total incompetence and dependency
to the idea that support for an individual’s capabilities
and an appreciation for her presence in the community is desirable.
“My sister is 42 and when it was finally determined she had
Down syndrome, the doctor was telling my parents that she was blind,
she would never walk or talk; they should put her in an institution
and forget about her,” says Knox. “We’ve come
a long way from that attitude, I would hope, to realize that people
can be better supported in community-based services as fellow citizens
with their dignity and abilities respected.”
(Watch for the Fall issue of the SACL’s Dialect magazine for
an interview with Ron Kruzeniski, Saskatchewan Public Guardian,
who shares his views on co-decision making.)
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