Participant Supports – Decision Making with Ethical Support
Authorised by Chief Executive Officer
Date: 31 January 2023
The following framework and procedures are based on Support for Decision Making – A practice framework by Prof Christine Bigsby & Prof Jacinta Douglas, Living with Disability Research Centre Latrobe University, January 2016.
Introduction
Supported decision making starts from the premise that everyone has the right to participate in decision making. People with cognitive disabilities are enabled to participate in all decisions, through changed expectations of others, development of their skills and experience, provision of support to express their will and preferences and, at times, through the interpretation of their will and preferences.
In supported decision-making the person with cognitive disability is at the centre of their own decision making:
• support is made available to enable the person to participate in decision making.
• support is tailored to the person and their situation.
• support varies in type and intensity depending on the type of decision.
• supporters enable the person to exercise choice and control based on the person’s will and preference (not perceived best interests).
Little decisions and big decisions
The types of choices people make may vary from day-to-day choices (eg what to wear) to decisions that may have a big impact on health and happiness.
Learning how to make decisions on the day to day choices is good practice for making bigger decisions.
Three ways of making decisions
Different decisions may require different levels of support. (Bigsby & Douglas 2016)
Self-generated Decisions Supporters provide information and experience that enables the person to act on their own behalf based on their will, preferences and rights and taking account of resource constraints and consequences.
Shared Decisions Supporters provide information and experience that enables the person to express their will and preferences and if necessary interpret these, and assist in taking account of resource constraints and consequences.
Substitute Decisions Supporters provide information and experience and enable the person to express their will and preferences and if necessary interpret these, and assist in taking account of resource constraints and consequences. Supporters moderate a person’s will, preferences and rights if there are likely to be harmful consequences and the person does not have the ability to appreciate these.
Safeguards and accountability of Supported Decision-makers.
Support for decision making rests on the commitment of supporters to furthering the rights of the person to participate in decision making and to being directed by their will and preference in a person-centred way.
Supported decision-makers should always be able to explain and document the ways in which they came to know the will and preferences of the person.
The process for supported decision-making
A high level of trust and responsibility resides with the supported decision-makers.
1. Knowing the person. This means knowing all aspects of the person and having a sense of the person’s self-identity or self- concept. This usually encompasses knowing about their personal characteristics – likes, dislikes, preferences - skills, the effect on their understanding of their specific cognitive impairments – social connections - history and personal story.
2. Identifying and describing the decision. How it will impact, who it will impact, possible consequences.
3. Understanding a person’s will and preferences. Think about the decision. For some people preferences have to be interpreted by supporters based on their knowledge of the person, or garnered from the perspectives of others who know the person well or in a different context. At times there may be apparent conflict between immediate and longer term preferences that have to be weighed up.
4. Refining the decision and taking account of constraints. Preferences are prioritised and refined by constraints such as time, money, impact on other people, and safety. Ways are found to ensure the decision will be implemented.
5. Deciding whether a self-generated, Shared or Substitute decision needs to be made. The combination of this specific decision and the person’s own skills means they can be supported to make a self-generated decision or a shared decision, or an informal substitute decision. If some harm to themselves or others is anticipated this is the stage to decide whether they need support for a more formal process of making a substitute decision, such as use of a guardian or formal advocacy.
6. Reaching the decision. At this step, the decision is made to reflect preferences as closely as possible. The many consequential decisions that will flow from a major decision will become clearer. Communication with others about the decision.
7. Implementing a decision and seeking out advocates if necessary. Implementation of a big decision may not rest with decision making supporters. It might be with the NDIS, service provider or others. At this stage, decision making supporters may seek out advocates to support implementation of the decision or others in a person’s circle may shift into an advocacy role to make sure the decision is followed through.