How can I involve the person I care for in NDIS decision making?
The NDIS aims to give people with disability more choice and control in their life, and to support and develop their capacity to make important decisions. For some people this may be more difficult than others, such as those with impaired capacity through developmental delay, intellectual disability, mental ill-health, dementia, or an acquired brain injury.
The NDIS is a game changer, and that includes new legislation and changes to who can make decisions on behalf of others
We’ve partnered with La Trobe University to define different types of decision-making, identify issues to think about with each type and to help you reflect on your role in the decision-making of a person with disability.
1. Independent decision-making
Independent decision-making is the most empowering option and allows the person to assess and manage the risk involved in designing and implementing their NDIS plan.
Some risks to independent decision-making could include an abuse of power toward the person with a disability, social isolation or marginalisation, and the challenges of managing any personalised budgets.
Issues to think about
- It is important that a person is able to conceptualise what a risk is in making independent decisions.
- Those unrealistic assumptions about freedom to contract and equality of bargaining power are not made in a person’s freedom of choice.
- Ensuring that safeguards are designed to maximise choice accounting for a person’s vulnerability while keeping the participant safe.
- In discussing the appropriate range of safeguards for the participant – so that they can continue to have choice and control but feel supported where they would like to be - the NDIS Representative will obtain consent to include a participant’s family and others where that is appropriate for the participant.
2. Supported decision-making
Seeking advice and support when we make decisions is called supported decision-making. Supported decision making is one form of decision-making for a person who needs help with managing the process and can include gathering the necessary information, thinking about the options and working out possible consequences of the decision.
Most adults make decisions in consultation with other people, particularly when those decisions affect others, or when those decisions are important. Social networks or ‘circles of support’ help to build supports for good decision-making.
Issues to think about
- Does the person with disability have social networks such as friends and family who can support the person in their decision making? If not, how can these be built?
- Are advocates available to ensure that the decision-making process is about what the person wants instead of what others want for them? Are the people who support the person with disability – be they parents, carers or guardians - accountable to others?
- Have all of the options been explored in making the decision?
- Will supporters become de-facto guardians without the accountability of checks and balances of guardianship?
3. Substitute decision-making
Substitute decision-making involves one person making a decision on behalf of another. The law presumes that all people over 18 years of age have the capacity to make decisions.
If a parent, carer or other interested person wants to make a decision on behalf of someone else they will need to seek legal power to do so.
The NDIS recognises that not everyone has the capacity to make important decisions. Existing powers of attorney and guardianship orders are not affected by the NDIS but the new legislation provides for appointment of ‘nominees’ who can also make decisions on behalf of others.
Informal versus formal decision-makers
The role of an informal decision-maker is different from that of a formal decision-maker or guardian appointed by a tribunal. The law in most states (with the exception of the Northern Territory) recognises that, depending on the issue, decisions can be made informally by a person’s family or support network without the need to appoint a guardian.
When a guardian is appointed by a tribunal, that person (or persons) become formal decision makers who are legally responsible and accountable for their actions and decisions.
Appointed guardians
Guardianship orders are made as a ‘last resort’ for people who do not have the capacity to make specific decisions. Guardians are appointed by a state tribunal.
Issues to think about
- Guardianship Boards and Tribunals in each of the States and Territories make guardianship orders. A guardianship order can be ‘plenary’, giving the guardian full decision-making power, or ‘partial’, allowing the guardian to make some decisions and not others.
- Guardians are appointed where it is established that a person with a cognitive impairment, needs to make decisions but the person is unable to make decisions because of their impairment.
- Guardians are required to make decisions that promote the best interests of the person, take into account their wishes and are the least restrictive in the circumstances.
- Guardians can be appointed for specific decisions – for example, those relating to accommodation, health or finance decisions.
We will have more on nominees and guardians in the coming weeks, or you can get your copy of the Discover Guide - see details below.
For more information
This article is one of a series extracted from the Discover Guide, a 122 page comprehensive guide to the NDIS prepared by La Trobe University in conjunction with Endeavour Foundation and funded by the National Disability Insurance Agency. The guide aims to help people understand the various parts of the NDIS and how to access them. It also includes additional legal information - such as wills, guardianship, trusts and estate planning - for people with a disability and their families. Casey, G., Keyzer, P., & O’Donovan, D. (2016) Discover (2nd ed.). Melbourne: La Trobe University.