The Right to make Decisions
People with cognitive disabilities have the right to make decisions and exercise choice and control over their own lives. They have the right to receive the support they need to participate in decision making. These rights are embedded in the United Nations Convention on the Rights of Persons with Disabilities and the National Disability Insurance Scheme.
We no longer talk about whether a person has the capacity to make a decision, but what support do they need to make it?
Supported Decision Making
Supported decision making holds the promise of enabling good decision support for all people with cognitive disabilities by:
- Retaining their rights to make decisions while ensuring access to support and safeguarding mechanisms
- Recognising informal support arrangements
- Taking least restrictive options and enhancing autonomy by putting the person’s will and preferences at the centre of decision making
- Improving practices of support through better guidance, capacity building and accountability of supporters to principles of rights-based support
- Providing criteria for judging or challenging the quality of decision support
- Identifying where informal support is lacking and there is a need for additional formal resources.
The Australian Context
In Australia, the law is slowly changing to reflect the principles of supported decision making. But Australian law in all states still allows the removal of decision making rights from a person with cognitive disability.
Removal of decision making rights can happen if there is conflict about a decision the person wants to make, others consider it ‘too risky’ or a supporter thinks the person does not fully understand the implications of a decision.
Removal of decision making rights can happen if there is conflict about a decision the person wants to make, others consider it ‘too risky’ or a supporter thinks the person does not fully understand the implications of a decision.
This short video illustrates a situation where a Guardian might be sought to assist with the decision.
Administrators can be appointed to make financial decisions for people with cognitive disabilities, and Guardians can be appointed for other types of decisions.
The types of decisions they make are known as ‘substitute' decisions. The laws in each state are different. The law sets out the way substitute decision-makers are appointed and must make decisions. Increasingly, they are required to take into account the person’s will, preferences and rights.
There are many instances where ‘informal substitute’ decisions are made for people with cognitive disabilities. This occurs when a person may not be able to clearly articulate their preferences, understand all the implications of a decision or a supporter knows them well and has interpreted their preferences. Sometimes informal supporters make substitute decisions when they think they know best what decision should be made.
The types of decisions they make are known as ‘substitute' decisions. The laws in each state are different. The law sets out the way substitute decision-makers are appointed and must make decisions. Increasingly, they are required to take into account the person’s will, preferences and rights.
There are many instances where ‘informal substitute’ decisions are made for people with cognitive disabilities. This occurs when a person may not be able to clearly articulate their preferences, understand all the implications of a decision or a supporter knows them well and has interpreted their preferences. Sometimes informal supporters make substitute decisions when they think they know best what decision should be made.
Expectations of Supporters
There are changing expectations of the way supporters who provide decision support should act, and that if informal substitute decisions are made they will:
The idea of preferences is straightforward. A preference is what I want, now at this moment in time. For example, my preference might be to move out of home and into a flat in the inner city.
In contrast, will refers to a longer term and more enduring sense of what I am trying to achieve in my life. For example, my will might be to be more independent from my parents. Understanding a person’s will helps to understand why they have particular preferences.
The link between will and preferences can be clear as in this example. My preference to move to a flat in the city reflects my will to be more independent. Preferences might change with experience or situation but generally still reflect a person’s underlying will. For example, having experienced living in the city and in a regional town my preference might shift away from the city but still reflects my will to be independent of my parents.
As a general principle, decisions should minimise any restriction of a person’s rights.
In this resource, we use the term Support for Decision Making to acknowledge that there is no uniform Supported Decision Making legislation in Australia.
- Reflect the person’s preferences, will and rights
- Be accountable and demonstrate they have not influenced the decision
- Use the type of support processes we describe in this training resource.
The idea of preferences is straightforward. A preference is what I want, now at this moment in time. For example, my preference might be to move out of home and into a flat in the inner city.
In contrast, will refers to a longer term and more enduring sense of what I am trying to achieve in my life. For example, my will might be to be more independent from my parents. Understanding a person’s will helps to understand why they have particular preferences.
The link between will and preferences can be clear as in this example. My preference to move to a flat in the city reflects my will to be more independent. Preferences might change with experience or situation but generally still reflect a person’s underlying will. For example, having experienced living in the city and in a regional town my preference might shift away from the city but still reflects my will to be independent of my parents.
As a general principle, decisions should minimise any restriction of a person’s rights.
In this resource, we use the term Support for Decision Making to acknowledge that there is no uniform Supported Decision Making legislation in Australia.
Summary Module 1
Support for decision making is a process that is used to support people with cognitive disabilities to participate in making decisions that affect their own lives.
In this module you have learnt that:
In this module you have learnt that:
- Everybody has the capacity to make decisions
- In Australia, substitute decision making is permitted in cases involving conflict or potential harm
- When supporting a person with cognitive disability to make decisions, you must ensure that the decision reflects their will and preferences and is least restrictive of their rights.