linking advocacy, support, capability and choice across the decision-making spectrum: supported...

'Linking advocacy, support, capability and choice across the decision-making spectrum:

Supported decision-making: from theory to practice. Victorian Office of the Public Advocate.Friday 18th October 2013

Assoc Prof. Paul Ramcharan

Centre for Applied Social Research.

Some questions…• If we are looking solely at individual capacity we

require a mechanism of looking at cognitive deficit. This immediately leads to a pathological approach. It also treats the right to personal choice as contingent upon capacity and not as ‘absolute’.

• The boundaries between levels of choice-making based upon capacity create administrative and legal categories. These categories and rules around autonomy may be at odds with the ‘ideal’ of individual choice-making

• An alternative is to see the decision-making as what is distributed within naturally existing networks. The trouble here is that a lot of people live isolated lives and may be vulnerable to the imposition of others’ choices as a surrogate for their own.

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Inherent in ‘capacity’ is ‘deficit’

Personal choice contingent not necessary

‘notes from the

margin.'

∴ Administering legal boundaries can seem at odds with personal choice- making

One solution: use network not person as administrative category(‘ultra vires’ the law)

Human Rights

1st Principle of CRPD:

•Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons

So , how can our understanding of ‘choice-making’ inform the discussions around the decision-making spectrum and ensure that personal choice-making in optimised?RMIT University©

Choice and autonomy

‘notes from the

margin.'

Can knowing more about ‘choice’ help?

‘The Choice-making Toolkit’

Funding:

FaCHSIA, Practical Design Fund

• Partners RMIT and Inclusion Melbourne

Ramcharan, P., Leighton, D., Moors, R., Laragy, C., Despott, N. and Guven, N. (2013) It’s My Choice Toolkit. Melbourne; Inclusion Melbourne and RMIT University

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5

Resource 1 The Principles of

Choice

Resource 2A guide for people with a disability,

family carers and friends

Resource 3A guide for people

who deliver services and supports to people with a

disability© RMIT University 2013 Centre for Applied Social Research

It’s My Choice! Toolkit

6

Resource 6Knowledge review

Resource 5Film Discussion

Guide

Resource 4Three films on DVD

In Sarah’s own time

David’s artful choices

It’s not that simple.

© RMIT University 2013 Centre for Applied Social Research

It’s My Choice! Toolkit

Levels of choice-making:

• Principle 1 - I have the right to make choices throughout my day. These are called ‘mundane’ or ‘everyday' choices.

• Principle 2 - I have the right to be who I choose to be. These are called ‘lifestyle’ choices.

• Principle 3 - I can choose what I want, my big hopes, dreams, and goals . These are called ‘pervasive’ choices.

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‘notes from the

margin.'‘Alignment’ is one way of ensuring decisions‘make sense’

Potentially fends off the need for ‘legal solutions’ in some cases and so helps optimise individual choice-making.

Informs administrative decision-making.

• Principal 4 - All actions to pursue choices start with me. I am the source and originator of my own choices. Choice is diverse.

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‘notes from the

margin.'Know the person!!

A personalised resource of preferences based on reactions over the years.

Aids ‘origination’ and predicting the person’s ‘likely’ choices.

Reduces concerns likely to lead to administrative solutions, or, guides these solutions.

• Principle 5 - My choices are likely to be greater and more 'expansive' where I have more knowledge and experience to inform my choices. Building knowledge and experience is important to making choices informed by past experience.

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‘notes from the

margin.'Know the person through their experiences.

Record!!

Informed choice is constitutionally comparative...chosen out of comparison between available options!!

(Note: Expansive choices do NOT fit everyone’s preference. Some like routines, fewer people but stronger relationships).

• Principle 6 - Nobody is completely free to choose and pursue any choice they wish. What is important is whether the limitations experienced by a person are reasonable or not.

– Based on arguments of discrimination and social justice, limitation should be no greater for me as a person with disability than it is for others

– Limitations on my experiences should be no different in form or measure to community ‘norms’

– I have equal human rights to everyone else. In making my choices disability discrimination says it is an offense if these human rights are not respected, protected and fulfilled.

– If there are reasonable limitations on my choice I have a right to try and overcome these. I cannot achieve everything I want. All people are limited by their capabilities but striving to achieve the highest level of capability is what makes life meaningful. This may only be achieved where I have dignity of risk.

•

•

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‘notes from the

margin.'Human rights and social justice ensure limitations are no greater than for others.

Tools need to be designed for this purpose.

Achieving my capabilities is the struggle of life. It makes my life meaningful. I need to be allowed to take risks!

Non-reasonable limitations should be addressed by the person, through support and through advocacy.

Principle 6 (cont’d)

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‘notes from the

margin.'

There is a need for advocacy!!!!!!!!!

To ensure rights met, capabilities pursued and for rights bearers to dialogue with those who hold duties to act.

• Principle 7 - Each person, including each person with disability, has the right to exercise their choice to the greatest degree possible without interference or competence-inhibiting support. All support must be competency-enhancing.

• I am not excluded from choice if I am unable to speak for myself. I may need support (technical or personal) and/or advocacy at different times. But that support must not stop me from making the choice myself if I can do so.

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‘notes from the

margin.'• Use the principles of choice• Really know the person• Origination - Start with hopes, dreams and aspirations• Provide experiences• Develop a personalised human rights resource around choices, non-negotiables• Work to a person’s capabilities• Increase dignity of risk• Work to address limitations and involve advocates• Support in the decision-making process• Couch all support and advocacy in a human rights-based model

Principle 7 (Cont’d)

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‘notes from the

margin.'Undertaken to the extent required without taking away autonomy:

Support and advocacy :

•To report on how knowing the person informs choices of those with no capacity

•Supporting the person to explore their choices through experience

•Support the person to speak out and be heard

•Provide practical support to accomplish the choice (linked to plan).

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Make service accountable for their failure to support choice and achieve hopes, dreams and wishes..

Conclusions

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Understanding more about choice has the potential to:

• extend the machinery and practical tools to deflect the need for administrative categories that are by their nature contradictory to choice and to contribute to their use

• place human rights, capabilities and social justice at the heart of decisions and planning

• fit with the processes of the NDIS, especially with individualised planning and funding frameworks

• inform debates around Guardianship, substitute-decision-making, and NDIS Nominees

• improve lives and well being.

The Choice-making Toolkit puts in place practical tools and is a starting point upon which wre can build. The model will need testing and refining.

Practical tools for human rights: There are also a number of important CRPD principles

• I ndividual autonomy (perhaps the most important)

• R espect for difference

•A ccessibility

•N on-discrimination

•F ull and effective participation and inclusion in society

•R espect for evolving capacities

•E quality of opportunity

•E quality between men and women.

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