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UNCRPD Article 12: Can it be upheld for people who
communicate informally?
The role of supported decision making in the lives of
people with severe to profound intellectual disability
Paper presented at:
The 16th Biennial Conference of
ISAAC, Lisbon, Portugal
Discover Communication!
Presented by Jo Watson
Scope, Victoria, Australia
Deakin University, Victoria,
Australia
Jwatson@scopevic.org.au
Twitter: @Jowat
Watson, Hagiliassis, Wilson (2014)Photo: Scope

United Nations convention on the Rights of Persons
with Disabilities (UNCRPD)
Watson,
Hagiliassis,
Wilson
(2014)

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)

Article 12 (UNCRPD, 2006)
‘Persons with disabilities enjoy legal capacity
on an equal basis with others in all aspects of
life’
Signatory nations:
‘shall take appropriate measures to provide
access by persons with disabilities to the
support they may require in exercising their
legal capacity’
Watson, Hagiliassis, Wilson (2014)

We live in a time and
place where:
“freedom and
autonomy are valued
above all else”
Schwartz 2000

So why isn’t everyone invited to the party?

1. Definitions of personhood
“Current conceptualisations of personhood in
relation to human rights exclude people with
intellectual disability”
(Fyson and Comby, 2013)

2. Communication
Watson
2013

Unintentional
Communication
Intentional
informal/non-
symbolic
communication
Symbolic
communication

3. Understandings of decision making capacity
Self-determination and communication literature
highlights that:
“Despite changing perceptions, a lack of
acceptance that people with severe to profound
intellectual disabilities can communicate and
therefore participate in decisions still exists”
(Watson, N.D.)

7

“When self-determination is
interpreted strictly to mean
“doing it yourself”, there is
an obvious problem for
people with significant
disabilities, many of whom
may have limits to the
number and types of
activities they can perform
independently”
(Wehmeyer, 1998 p.65)

Re-conceptualizing decision making 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)

Research aim
To examine the
processes,
characterizations,
enablers and barriers
relating to decision-
making participation and
support for people with
severe to profound
intellectual disabilities in
order to understand how
this participation can be
fostered
(Watson, n.d.)

Perception of decision making capacity matters
(Carney, 1997; Quinn, 2010)

On 1-5 scale, how much do you agree with statement:
’X is able to participate in decisions about his/her life’?
0

1

2

3

4

5

A1
A2
N1
N2
Na1
Na2
Y1
Y2
K1
K2

Ra#ng
on
scale
1-‐5

Focus
people

Pre-‐interven>on

Post-‐interven>on

‘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’

Paid supporter

Factors impacting on supporters’ perception of
focus people’s capacity to participate in decisions
1.  Understanding the human communication
continuum;
2.  Individual versus collaborative interpretation;
3.  The nature of the relationship (closeness)
4.  Viewing focus person ‘beyond their disability’;
5.  The kind of decision being made;
6.  Acknowledging interdependence;

Relationship between understanding the communication
continuum and perceptions of decision making capacity
Watson
2013

0

0.5

1

1.5

2

2.5

3

3.5

4

4.5

5

Pre
interven>on
Post
interven>on

Understanding
of
communica>on
con>nuum

Percep>on
of
decision
making
capacity

Individual verses collaborative interpretation

Another ride?
Video: Melba Support Services

Pre
supported
decision

making
process

Post
supported
decision

making
process

‘These questions really are not
relevant. I really struggle with the
premise of these questions. You talk
about where he lives, who he lives
with, can he have a pet. When you
talk about the 'real world' (uses
fingers to demonstrate quotation
marks), Kevin can't decide where
he lives. He can't decide whether
he has a pet. He has to slot into the
house as it is’
Kevin’s support worker

‘I've worked out that what we think
about capacity is really important.
If we deny his capacity then what's
the point of us paying attention to
his preference, because when you
think about it by saying he has no
capacity we are saying he doesn't
have preferences’
Kevin’s support worker

Watson 2013
6
months

Relationship closeness

Despite the value 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

Mean scores on 'questionnaire about choice'
based on categories of closeness
0

1

2

3

Paid
supporters
percep#on
of

decision
making
capacity

Rela#onship
(level
of
closeness)

In>mate
(n=6)

Very
Close
(n=9)

Close
(n=5)

Not
close
(n=4)

Distant
(n=1)

But there are challenges
‘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

Are we ready to uphold Article 12 for all?
Yes:
If decision making is characterized as
interdependent rather than independent
particularly for people with severe to
profound ID.
If the following factors are taken seriously
within the context of decision making
support for this population:
-  Understanding the communication
continuum
-  Individual versus collaborative interpretation
of preference;
-  Relationship closeness (paid and unpaid)

Acknowledgments

We acknowledge the many
people and their supporters who
have contributed to this research
and have given permission for their
stories and images to be shared
within this presentation.
This work is especially dedicated to
Dean (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.
Photo: Scope

References
Bach, M., & Kerzner, L. (2010). A New Paradigm for Protecting Autonomy and the Right to Legal Capacity. Ontario, Canada: Law Commission of Ontario.
Beamer, S., & Brookes, M. (2001). Making decisions. Best practice and new ideas for supporting people with high support needs to make decisions. London: Values
into Action.
Bloomberg, K., West, D., & Iacono, T. (2003). PICTURE IT: an evaluation of a training program for carers of adults with severe and multiple disabilities. Journal of
Intellectual and Developmental Disability, 28(3), 260-282.
Brown, F., & Gothelf, C. (1996). Self-determination for all individuals. In D. Lehr & F. Brown (Eds.), People with disabilities who challenge the system (pp. 335-353).
Baltimore: Paul H. Brookes.
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disabilities. Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities (Vol. 14). Geneva: United Nations.
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University of British Colombia, Vancouver, Canada. http://cic.arts.ubc.ca/fileadmin/
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those rarely heard. A guide for supporters. A training package developed by Scope. Melbourne: Scope.
Wehmeyer, M. (1998). Self-determination and individuals with significant disabilities: Examining meanings and misinterpretations. Journal of the Association for
Persons With Severe Handicaps, 23(1), 5-16.

Contact
details

Jwatson@scopevic.org.au
Twitter: @Jowat
www.scopevic.org.au

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