‘Handing Over the Reins’
Enabling choice and control within
the disability services market-place
June 2014
Background
• The Office of the Public Advocate operates within a statutory
framework and provides an important layer of protection and
promotion for the rights and autonomy of Queenslanders
with impaired decision-making capacity (IDMC).
• Statutory systems advocacy is best described as advocacy
delivered from within government, with a legislative basis.
• It is a strategy to influence government and non-government
policy makers – when they make laws, policies and
regulations, deliver goods and services, and make other
decisions that affect individuals.
The potential population
• In 2014, we estimate that there are up to 113,000 adults
(approx 1 in 42 people) with IDMC in Queensland; by 2024,
this may grow to 144,000 (1 in 40 people)
• The potential population is not limited to people who receive
a specialist disability service or those subject to guardianship
and administration orders
• Not everyone with
disability has impaired
decision-making capacity
20
Estimated persons ('000)
• It includes people with a
range of conditions that
may impact decisionmaking capacity
25
15
10
5
0
Under 30
30-39
40-49
50-59
60-69
Age group (years)
70-79
80+
Impaired decision-making capacity
• Describes a state of being in which a person
finds it difficult to follow the process of
making a decision and putting it into effect
• Three elements:
– Understanding nature and effect of the decision
– Freely and voluntarily making the decision
– Communicating the decision
Impaired decision-making capacity (cont.)
• May arise as result of a number of conditions
• May differ according to:
–
–
–
–
nature and extent of impairment
type and complexity of decision to be made
context in which decision is to be made
level of assistance available to the person
• Need for support may be temporary or could
fluctuate over time
• May have impaired capacity for some matters but
not others
The freedom to make one’s
own decisions
A human rights obligation
Contemporary understandings of
disability
• In its Preamble, the Convention recognises that
disability:
– is an evolving concept
– results from the interaction between a person with
impairment and attitudinal and environmental barriers
that hinder participation
• In other words, the extent to which an impairment
becomes disabling usually reflects a lack of
reasonable accommodation by society
Laying the foundation
• United Nations Convention on the Rights of Persons
with Disabilities
– Article 3 General Principles
• Respect for inherent dignity, individual autonomy including the
freedom to make one’s own choices, and independence of
persons
• Full and effective participation and inclusion in society
• Australia, including all of its states and territories,
has an obligation to take appropriate measures to
ensure principles are supported and applied
Queensland legislation
• Guardianship and Administration Act 2000
– Presumption of capacity
– Right to make decisions is fundamental to dignity
– Right to adequate and appropriate support for decisionmaking
– Right to participate to greatest extent practicable in
decisions affecting the person
– Must be given any necessary support, and access to
information, to enable participation in decision-making
– Person’s views and wishes must be taken into account
– Principle of substituted judgment – previous actions as
indicator of what current views and wishes might be
Current ALRC Inquiry:
Equality, Capacity and Disability in Commonwealth Laws
• Assumes that all persons have legal standing and focuses
on the support that is required to exercise legal agency
• Proposals being considered:
– Set of four national decision-making principles (NDMP)
– Introduce the roles of ‘Supporter’ and ‘Representative’ to
Commonwealth Laws to enable recognition and give authority
– While change will be pursued at the Cth level, there will also be
a recommendation that states/territories adopt the NDMP (eg
in guardianship legislation)
Supported Decision-Making
What’s all the fuss about?
Let’s talk turkey…
• Everyone makes decisions in different ways
• At different times, we all seek guidance or support to
make decisions
• Sometimes we talk to others in working through the
pros and cons of a range of options to help us decide
the best course of action
• Sometimes we seek help because we haven’t
encountered the issue before or because we need
more information
• Some people may experience more difficulty making
a decision than others
What does supported decision-making
mean?
• Lots of things to different people
• Umbrella term that refers to a process by which a
range of supports may be used to enable a person to
make their own decisions
• Puts the person at the centre of the decision-making
process and ensures that they have a voice
• Captures a wide variety of mechanisms, strategies,
and practices ranging from formal systems enshrined
in legislation to everyday practices
Let’s unpack that…
• Supported decision-making is not a ‘thing’… it is not
an object that can be put on a pedestal for us all to
admire
• Unfortunately we don’t yet know what works, for
whom and how
• It is an evolving understanding that seeks to build on
what you and I do everyday in a way that enables
those whose voice is not currently heard to take over
the decision-making driver’s seat
• It is a process… and involves a culture of change
Let’s change the language
• For many people, supported decision-making
seems to be an aspiration and yet many of us
do it every day without even realising it
• However, as with many new terms, at the
heart of the concept is a fairly simple idea
• It may help to turn the term around and talk
about…
‘decision-making support’
Decision-making support in practice
• It doesn’t have to be hard though it may take some
time to ‘teach’ people how to make decisions if they
haven’t had the chance to do so before
• Start with helping the person to make simple
decisions and then progressively build on the
person’s developing ability
• There is no right way or wrong way… it is about
working out what works for the person
• Use pictures… or actions… or speech
• No gimmicks required… it can start now!
Who provides decision-making support?
• Ideally… everyone!
• Practically, it requires someone who is familiar with the
person and their communication preferences
• Most importantly, it requires someone who is able to provide
information in a way that helps the person understand the
nature of the decision while not ‘telling’ the person what they
should do
• Currently people who take on a ‘supporter’ role in respect of
decision-making are not accorded any ‘authority’ in legislation
(sometimes limits their ability to act – eg when interacting
with financial institutions)
• Provisions for a ‘nominee’ (eg under NDIS and Centrelink)
provide some level of authority in this respect
What does decision-making support involve?
• Helping a person to understand that a decision
needs to be made
• Explaining the options and choices that are
available in a way the person understands
• Communicating the person’s intentions to others
• Helping others understand the person’s rights,
interests, goals, etc
• ‘Listening’ to a person’s behaviour… encouraging
the person to ‘show’ you what they want
Handing over the reins
Finding the right balance to help
people stay safe
Ensuring appropriate safeguards
• What to look for when sourcing services and
supports:
– Extent to which person is involved in deciding their
program of supports
– Willingness of provider to have support network engaged
in discussions
– Documented policies and procedures that are made
readily available
– Robust complaints systems
– Self-audit processes – how does the provider ensure
independence between service delivery and monitoring
– Service accreditation and quality assurance
Don’t step out… just step back
• It may not be possible for everyone… though
it is likely to be possible for most
• Dignity of risk – it’s okay for a person to make
bad decisions… we all learn from our mistakes
• Be creative – help the person to think about
the safest way to achieve what they want
• Limitations don’t mean choices have to be
limited
The way forward…
• Many states and territories undertaking
research and trials
• New understanding is paving the way for a
cultural shift
• NDIS presents an opportunity to engage
differently and, in doing so, achieve
increasingly better outcomes
… this is just the beginning!
Thank you… questions?
Jodie Cook
Public Advocate (Qld)
Office of the Public Advocate
Email: public.advocate@justice.qld.gov.au
Website: www.publicadvocate.qld.gov.au
Phone: 3224 7424