Chapter 13 Section F: Decision-making and the NDIS
Every day we make a countless number of decisions. Some having been thought through with logic, others may be impulsive, made instinctively and guided by our emotions and preferences. Through the decisions we make, we are able to exert control over our own lives, and experience new things.
Often people will exercise their right to make independent decisions, especially when they feel they do not require help to make such a decision. Nonetheless even when well informed, a person may decide to make use of the support and advice from trusted people or people with specific expertise that they have confidence in, and feel are well placed to assist them in making a particular decision.
However, some people may need a higher level of support when it is necessary to make a decision, and the degree of support will often vary according to its complexity. People living with mental health and co-existing conditions may experience difficulties making decisions for a number of reasons, including: how well they are at a particular time, the impact of their condition on cognition, the side-effects of medications prescribed, the time of day, as well as the stress that can arise from the necessity to make a decision in itself, People may also experience difficulties in making decisions because in the past others have made decisions on their behalf; or past experience of failure or imposed negative beliefs of others has affected their sense of confidence and they may feel unwilling to take the risk.
Some people may also be the subject of an involuntary treatment order, a guardianship or financial management order, all of which have consequences on their right to independently make decisions in a number of areas. Whilst such orders are intended to operate maximising the participation of the person in decision-making about things that affect their lives, in reality those either appointed in a guardianship capacity or acting as their treating clinicians (in hospital or the community) will exercise authority over the person according to the circumstances.
There are a number of approaches to decision-making which are used according to the circumstances, and they often vary in different services and settings. Decision-making approaches range from independent decision-making through to formal arrangements such as guardianship or financial management orders, with a number of support options occurring in between. Different levels of support may be required at different points in people’s lives, depending on the person’s current life circumstance and the network of supports available to them.
Chapter 5 of this our manual provides an overview of some of the subjects raised in this section.
This chapter will provide information about:
- Decision-making approaches
- Guardianship orders and the NDIS
- Financial management orders and the NDIS
- NDIA appointed nominees
- Can I have an advocate?
- The role of carers as advocates
Supported decision-making can occur as a part of what support workers provide at their service and may include more formal processes such as using a written agreement involved to convey the decisions made and the parties involved. It can also take place informally where family members, friends, carers and paid workers may all play a role in supporting a person to make decisions about the things that are important to them. Supporters should remain unbiased in their assistance and not exhibit preferences for the decision outcome. Supported decision-making helps maximise independence, dignity and promotes a meaningful life and is described as the process of assisting a person to make their own decisions so they can identify and pursue goals, make choices about their life and exercise control over the things that are important to them.
Some core principles provide the basis for supported decision-making practice, these are:
- Everyone has the right to make decisions about the things that affect them
- Capacity to make decisions must be assumed
- Every effort should be made to support people to make their decisions
- Capacity is decision specific
- People have the right to learn from experience
- People have the right to change their minds
- People have the right to make decisions that others may not agree with
Supported decision-making (SDM) is an approach informed by the principles and values of recovery-oriented practice, aiming to maximise choice and control which are objectives that underpin the legislative mandate in the operations of the NDIS. SDM emphasises the centrality of a participant’s right to directing and making decisions about what is important to them in leading a good life, and the NDIS supports people to build the skills and capacity to better participate in the community and in employment. Decision-making exercised by an individual living with a disability is key to ensuring quality service delivery and a supported decision-making practice approach best allows participants to exercise choice and control over their NDIS funded package if they are unable to autonomously advocate for themselves in the development of their plan.
Shared decision-making is when an individual actively seeks and uses the opinions of a support person with whom they generally have a formal relationship. The support person and the individual together choose the best outcome for the individual and work in partnership to weigh up the benefits and risks involved. While this approach can be very helpful, shared decision-making can lead to ‘proxy decision-making’ when the support person makes the decision for the individual. To ensure that proxy decision-making does not occur, allowing the individual to retain choice and control in the decision-making process will safeguard this.
In NSW, substitute decision-making for individuals is the role of trusted people such as family members, an appointed guardian, or government officers such as the Public Guardian and/or the NSW Trustee and Guardian. The decisions these substitute decision-makers may make will depend on the order, but usually refer to medical, lifestyle and financial management matters. A guardian may have a decision-making role in respect of restrictive practices. Restrictive practices should only be used in the context of a holistic response to the person’s needs, and in particular, to the factors that may be causing the behaviour.
A person under guardianship order is generally considered to lack decision-making capacity which is why another person is appointed to undertake the decision-making role, however decisions must be informed (where possible) by the persons will and preferences. This level of decision-making is understood to be decision specific and a measure of last resort.
For more information about restrictive practices and guardianship click here.
The Guardianship Act 1987 allows the appointment of a guardian (substitute decision-maker) where a person living with a disability is considered to lack capacity to make certain decisions. A guardian can be legally appointed to make medical or lifestyle decisions on a person’s behalf, and may be a private guardian (family or friend) or a NSW Public Guardian which may be appointed where there is no other suitable person available. Guardianship is usually limited to a particular area, e.g. accommodation or medical decisions, and is time-limited. The guardian is legally responsible for the decisions and makes them in the best interests of the person.
If you have a private or enduring guardian, they should contact the NDIA to make them aware that they are your legally appointed guardian. Service providers and your Local Area Coordinator should also be informed of who your legally appointed guardian is and the extent of their decision making authority.
When decision-making is to occur, the NDIA works with the person or body who has guardianship responsibility in the same way that they would work with parents and carers of NDIS participants who are under 18, however it is understood that NDIA planners will support participants as much as possible to exercise choice and control over their supports and providers.
Guardians will be involved in assisting plan development, helping to identify participant’s goals, and providing consent to employ or terminate services. They will advocate for the participant to ensure that the NDIA is aware of the current needs of the person, their cultural and lifestyle preferences and any critical unmet needs or gaps in service delivery are addressed.
Formal guardians are allowed to contact the NDIA on your behalf if you are unable to make contact yourself and they also have the ability to make an NDIS access request on your behalf.
Follow this link for the overview of guardianship in this manual.
Follow this link for information about guardians and the NDIS.
The Trustee and Guardianship Act 2009 established the NSW Trustee and Guardian (NSWTG). The NSW Trustee and Guardian provides financial management services to people living with disability and considered to lack the capacity to make certain decisions on their own behalf. This act allows for substitute decision-making by a Trustee and Guardian and covers decisions about a person’s financial, property and legal matters.
If you are an NDIS participant and you are currently under a financial management order, your NDIS funding is not managed by your financial manager as it is not classed as being part of your estate. Your NDIS plan will either be managed by a plan manager or the NDIA. The only aspect of your plan which your financial manager can supervise is if a there is a transport funding component to your package.
When entering the NDIS, the NSWTG will provide the NDIA with information about your finances to give them an idea of what your financial budget looks like so that a meaningful and appropriate plan can be developed. Once your plan has been prepared the NDIA should provide the NSWTG with a copy of your plan.
It is recommended that if you possess a financial management order that a Support Coordinator should be included in your package.
For an overview and more information about financial management orders in this manual follow this link.
The NDIS aims to support participants to maximise choice and control in decision-making, and holds the presumption that persons over 18 years have the full capacity to determine their best interests and can make decisions regarding the supports they need and how they use them. However, where a person is considered to lack the capacity to make such decisions and the participant isn’t currently under a formal guardianship order, a nominee may be appointed by the NDIA. It is rare for the NDIA to find it necessary to appoint a nominee for a participant who has not requested one themselves.
The decision to appoint or not to appoint a nominee can be appealed to the Administrative Appeals Tribunal (AAT). The process of deciding to appoint a nominee is about what is considered to be in the best interest of the participant, and this is handled individually for each participant. The NDIA will take into account your existing informal supports and networks when deciding who should be appointed as your nominee.
If you are currently in a guardianship arrangement, the assumption with the NDIA is that your guardian will be your appointed nominee. Nominees have a duty to establish your hopes and dreams and help make decisions that will ensure these will be achieved, and maximise your overall wellbeing.
There are two types of nominees: a correspondence nominee or a plan nominee, with one individual able to perform both roles. More than one person can be appointed a plan nominee.
A correspondence nominee can undertake all activities that a participant would undertake, except for:
- The preparation, review or replacement of the participant’s plan; and/or
- Management of the funding for supports in the participant’s plan.
- The preparation, review or replacement of the participant’s plan; and/or
- Management of the funding for supports in the participant’s plan.
- A person aged under 18 years cannot be appointed as a nominee
- The NDIA cannot be an appointed nominee
- An employee of the NDIA or a registered NDIS provider cannot be appointed as a nominee.
- The NDIA must take into consideration the expressed wishes of the participant regarding the appointment of a nominee. These wishes could be expressed non-verbally or through a third party, such as a support worker or family member.
- The NDIA must obtain written consent from the person appointed nominee before they are assigned to the role
You may want someone to represent you or support you to speak up for yourself and make sure your wishes and needs are being prioritised. This person can be a family member, a friend, a carer, a support worker, or someone you’ve employed to help coordinate or engage with services on your behalf. These people can be referred to as your advocate. They can participate in phone calls and meetings with you and can speak, write or act on your behalf.
The NDIA do not provide advocacy support services as part of a package or generalist participant services, however there are mainstream government provided programs that do provide advocacy support. One of these programs is the National Disability Advocacy Program (NDAP). NDAP can tell you about any programs or peer support services in your local area that can assist with advocacy, or help you to develop self-advocacy skills to identify and best express your needs and wants.
For an overview and more information about advocacy in this manual, follow this link.
Carers and family members can play a significant role in your NDIS journey, if you request it. Carers and family members can assist with decision-making about ongoing support needs, help with goal setting, assessment and the planning process. You may ask a support person such as a family member, friend, or support worker to help you make an access request. You will need to provide permission for your support person to make an access request on your behalf.
If you are under 18 years, you are legally classed as a child under the NDIS Act 2013. This means that your parent or guardian will be required to make decisions on your behalf. However, it is understood that a child’s capacity for making decisions will evolve over time, and the NDIA will take into account whether a young person can represent themselves and exercise choice and control.
Follow this link for more information in this manual on the rights and responsibilities of carers, and information of how carers can advocate on your behalf in the mental health and legal service systems.