‘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

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• It includes people with a range of conditions that may impact decision-making capacity

• Not everyone with disability has impaired decision-making capacity

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

A human rights obligation

The freedom to make one’s own decisions

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 decision-

making– 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!

Jodie CookPublic Advocate (Qld)

Thank you… questions?

Office of the Public AdvocateEmail: public.advocate@justice.qld.gov.au

Website: www.publicadvocate.qld.gov.au

Phone: 3224 7424