Transcript Title headline here xx Month 2009

Supported decision making:
Are everyone's voices being heard?
Paper presented at:
Supported decision making:
from theory to practice
A conference auspiced by the
Victorian Office of the Public
Advocate
Jo Watson
Scope, Victoria, Australia
Deakin University, Victoria,
Australia
Photo: Scope
Contributions:
Nick Hagiliassis
Erin Wilson
Michael Bink
Rhonda Joseph
United Nations convention on the Rights of Persons with
Disabilities (UNCRPD)
The first principle of the
UNCRPD is:
‘respect for inherent dignity,
individual autonomy including
the freedom to make one’s
own choices, and
independence of persons’
(United Nations., 2006)
Watson 2013
Supported Decision Making: Basic principles
• Everyone can participate in decisions with support;
• Everyone has responses to things they experience. These
responses are often interpreted as preferences by people who
know someone well. These preferences can be used as the
building blocks of decisions;
• There is significant value in human beings supporting, and
working collaboratively with one another to make decisions;
• Everyone uses their support networks in making decisions that
are difficult for them.
Watson 2013
Supported Decision Making:
It’s not about individual capacity
‘The starting point is not a test of capacity, but the
presumption that every human being is
communicating all the time and that this
communication will include preferences.
Preferences can be built up into expressions of
choice and these into formal decisions. From this
perspective, where someone lands on a continuum
of capacity is not half as important as the amount
and type of support they get to build preferences
into choices’
(Beamer & Brookes, 2001 p.4)
Watson 2011
4
So why isn’t everyone invited to the party?
Photo: Melba disability support services
Watson 2013
‘Ok, so you're saying he can make a
decision? I get it, I get what you’re
saying, but I'm, I'm not sure you know
him, do you? He can't tell us what he
wants. We just decide shit for him.
You know, no offence but we have
all these programs and stuff, but at
the end of the day, people don't
know who we're dealing with here.
They just can't communicate. It's
different for them, they can't tell us
what they want, so we just have to
get on with it and make decisions
that we think are best for the guys’.
Watson 2013
Photo: Taken by
researcher
Perception of capacity matters
Watson 2013
Our research
Preliminary finding:
Those who have a positive view of a person’s
capacity to participate in decisions are likely to
be more responsive to the focus person.
Watson 2013
Photo: Melba disability support
services
‘Well, he is telling us
things all the time you
know. You know,
what he wants to eat
or doesn’t want to
eat, he certainly
contributes to
decisions made
about him, just needs
a shit load of help
from us’.
Watson 2013
Researcher:
‘So what was Yuri’s
decision there do think?’
Supporter:
‘I guess he told me if he
had had enough
sandwich by jamming his
mouth shut like he does,
there it is just like that. But
that’s not really what you
mean. A decision? I don’t
think so. Really?’
Watson 2013
Factors that appear to impact on supporters’ perception of
focus people’s capacity to participate in decisions
1.
2.
3.
4.
5.
Understanding the human
communication continuum;
Interpreting collaboratively as
opposed to individually:
Viewing focus person ‘beyond
their disability’;
The kind of decision being
made;
The nature of the relationship
(paid/unpaid/both)
Watson 2013
Understanding communication continuum:
Its impact on perception of focus person’s capacity to participate in
decision making?
Where supporters’ have a demonstrated understanding of
the communication continuum, it is appears likely they will
perceive the person as having capacity to participate in
decisions
Unintentional
Communication
Intentional
informal/nonsymbolic
communication
Watson 2013
Symbolic
communication
Relationship between understanding of communication
continuum and perception of decision-making capacity
Watson 2013
Individual verses collaborative interpretation
Another ride?
Watson 2013
Video: Melba Support Services
Watched individually
Watched collaboratively
‘Look spitting again, does it stop? Yep, I
reckon he’s enjoying that. The spitting is
usually when he is distressed, but I don’t
think it is here. Man, he’s happy isn’t he?’
‘Awww, he’s so happy, look Mum. I told
you.. Look he’s loving it’
It’s so hard to know whether another ride
would be a good idea though. This isn’t
enough information for me. Yes he’s happy
but I would want to know what else is
going on, perhaps talk to the person he is
there with?’
‘Is he talking in that, it sounds like he’s
saying ‘up’
‘That’s what I thought, do you think he is.
Stop it, can we watch again, I want to know
what you all think?’
‘Well based on that I reckon he should
have another Dumbo ride'
'Dumbo ride, Dumbo ride, Dumbo ride'
Watson 2013
The nature of relationships
‘Caring for’ and
‘caring about’
(Dalley, 1996)
Watson 2013
Despite the importance of unpaid relationships,
some have very few
‘He is just not as lucky
as some others guys in
the house. The only
people who really give
a shit about him are us
support workers.
Imagine a life like that.’
Support worker
Photo: Melba Support Services
Why are building these networks so challenging?
People with severe/profound intellectual disability can
be viewed as unattractive and unresponsive:
'I know this sounds awful, but I kind of was shocked
when I met them. Is it awful that I dry retched? Gary
had a smell, oh I'm sorry I sound awful.
They weren't like Dave when I first met him. He made
me laugh. He looked me in the eye and made me
laugh. With Neil and Gary, I kind of get the feeling that
they don't want me in their life. They give me very little
back, you know what I mean’
Volunteer
Watson 2013
‘His challenging behaviours don’t help’
‘His challenging behaviour don't help,
behaviours of concern, whatever we are
calling it these days. The spitting, it’s so not
attractive. It’s ok for us because we’re used to
it, but all that spitting and then playing in it. We
were in Spotlight the other day, people were
staring and moving away, it’s just disgusting
and I tell him that! I make him clean it up. Who's
going to want to be his friend’
Support worker
Watson 2013
Paid and unpaid roles:
Is it ok to blur the boundaries?
Watson 2013
Supporters’ perception of focus person’s capacity to
participate in decisions
(questionnaire
about
choice)
Rating 1 - 3
Watson 2013
Professional boundaries: Realistic? Helpful?
‘I’ve told her that she shouldn’t be dropping in there for a
cuppa. She knows too much about Derek and his family. It’s
ok that she shares superficial things with them, you know tell
them about what movies she has seen and what she got up
to on the weekend, stuff like that. But that should be it. She’s
way to open with them. I think she wants to be their friend’
Day service manager
‘I don't know. We get all these mixed messages. You can't
step over the line in terms of professional and personal stuff. I
don't get it, its impossible. I'm meant to care, but I'm not
meant to care’
Supporter worker
Watson 2013
Acknowledgments
We acknowledge the many
people and their supporters
who have helped and are
helping with this research.
This work is especially
dedicated to Neil (1968-2011)
who, along with his family
taught us so much more than
any seminar, workshop or text
ever could about living with a
profound intellectual disability.
Watson 2013
Photo: Scope