The roll out of the NDIS has led to an increased focus on choice and control for people with disability.
Some will have opportunities to make decisions about their lives for the first time.
A significant challenge for the NDIS is ensuring people with cognitive disability have the right support to enable them to participate in decisions – both in their NDIS plan and their lives in general.
Traditionally, it has been assumed that substitute decision-making (for example guardianship) is often appropriate for people who need support to make decisions. The substitute decision maker asks what action would be in the ‘best interests’ of the person with disability. However, the focus has now shifted to supported decision-making, asking “what support to people need to make their own decisions?”
This shift to supported decision-making has been inspired by a number of factors.
Article 12 of the United Nations Convention on the Right of Persons with Disability (UNCRPD) states that measures relating to the exercise of legal capacity must (among other criteria) respect the rights, will and preferences of the person, be free of conflict of interest and undue influence, and be proportional and tailored to the person's circumstances.
Building on this, a recent Australian Law Reform Commission (ALRC) report proposed that:
“the will, preferences and rights of persons who may require decision making support must direct decisions that affect their lives”.
Under this model, supporters enable the person to exercise choice and control based on the person’s will and preference (not perceived best interests).
To explore these issues, the Social Policy Research Centre recently hosted a debate on supported decision-making and its limits. All speakers agreed that decision-makers need to take steps to ascertain the will and preference of the person with disability, and build the person’s capacity to make their own decisions.
For this model to be effective, attention needs to be paid to the important role of supporters in supported decision-making. Support to participate in decision making must be tailored to both the individual and the decision. Depending on the person and context, supporters may:
- provide opportunities for the person to access and understand information about the decision;
- help the person to identify and weigh up constraints and consequences that they may not fully understand;
- use their observations and knowledge of the person to interpret what their preferences might be, or;
- moderate a person’s preferences if acting on these is likely to result in seriously harmful consequences that the person does not fully appreciate.
The NDIS provides an exciting opportunity to build the decision-making capacity of people with disability, one decision at a time.