Recommendation 5–3 The National Disability Insurance Scheme Act 2013 (Cth) and NDIS Rules should be amended to include provisions dealing with representatives consistent with the Commonwealth decision-making model.
5.66 In certain circumstances, a participant may not be able to make decisions themselves or with support, and may need a representative to be appointed for them. This should only occur in line with the National Decision-Making Principles and as a last resort.
5.67 The ALRC recommends that the current ‘nominee’ provisions be amended to allow the appointment of a representative. The change in terminology from ‘nominee’ to ‘representative’ is consistent with the National Decision-Making Principles. However, the provisions dealing with representatives will operate much the same as the nominee provisions, with some exceptions as discussed below.
5.68 Many of the elements contained in the ALRC’s model for ‘representatives’ are already incorporated into the NDIS Act, Rules or Operational Guidelines. For instance, consistent with the ALRC’s approach, nominees are appointed as a last resort, and there are duties on nominees to ascertain the will and preferences of the participant and to act in a manner that promotes the personal and social wellbeing of the participant.
5.69 The role of a representative is to support a participant to express their will and preferences in making decisions and, where necessary, to determine the will and preferences of a participant and give effect to them. If the will and preferences of the participant cannot be ascertained, the representative should consider the human rights relevant to the situation in making a decision. Such decisions may relate to the planning process, the participant’s plan, supports funded by the NDIS, interaction with service providers, or similar matters.
Functions and duties
Functions of a representative
5.70 Under the current nominee provisions, the role of a plan nominee may encompass decisions relating to the preparation, review or replacement of the participant’s plan; or management of funding for supports under the plan. However, the Nominee Rules provide for limitations on the matters that a plan nominee is appointed to deal with:
For example, the appointment might be restricted so as to prevent the nominee from specifying the goals, objectives and aspirations of the participant. In such a case, the nominee might still have authority with respect to the management of funding under a plan. Alternatively, the CEO might appoint 2 or more plan nominees, and, in each instrument of appointment, limit the matters in relation to which each person is the plan nominee.
5.71 Despite this provision, some stakeholders expressed concern that the role played by plan nominees is ‘a global appointment’, and it relies ‘on the discretion of the nominee to limit the use of their power; in particular the power to make substitute decisions when a person cannot be supported to make their own decisions’.
5.72 The scope of the role of a correspondence nominee is narrower and more closely reflects the functions performed by a supporter. For example, a correspondence nominee may make requests to the NDIA or receive notices from the NDIA, on behalf of the participant.
5.73 The ALRC considers that a representative should perform some or all of the functions articulated in Recommendation 4–7. These parallel the functions of supporters and are discussed in more detail below.
5.74 In line with the National Decision-Making Principles, the ALRC suggests that, in introducing the concept of representative under the NDIS, consideration be given to potential categories of representatives and ensuring that any appointment is decision-specific and limited in scope and time. For example, it may be appropriate to separate representative roles between those who provide general support in relation to interaction with the NDIA and planning, and those who are involved in financial decisions.
5.75 Representatives under the NDIS will play a key role in providing support to participants requiring full decision-making support. As a result, representatives should be subject to the duties and responsibilities articulated in Recommendation 4–8. A representative should have the same duties as a supporter, and a number of additional duties. It is important that representatives owe specific duties under the NDIS Act and Rules, even where they are an existing state or territory appointed decision-maker and are subject to duties under state and territory legislation.
5.76 The key duties the ALRC recommends that a representative should owe under the NDIS Act and Rules are:
providing support to a participant to express their will and preferences in making decisions;
where it is not possible to determine the current will and preferences of the participant, determining what the person would likely want based on all the information available;
where the first two avenues are not possible, considering the human rights relevant to the situation;
acting in a manner promoting the personal, social, financial and cultural wellbeing of the participant;
providing support to the participant to consult with ‘existing appointees’, family members, carers and other significant people in their life when making a decision; and
developing the capacity of the participant to make their own decisions.
5.77 There are a number of additional duties appropriate for NDIS representatives who provide fully supported decision-making support. One such duty is to support the participant to express their will and preferences. This is not currently reflected in the duties of nominees to ‘ascertain the wishes of the participant’, which is similar to but does not require provision of support to express will and preferences. However, there is some suggestion that this type of duty was intended under the NDIS Rules because, in deciding who to appoint as a nominee, the CEO is to have regard to the degree to which the proposed nominee is willing and able to ‘involve the participant in decision-making processes’, ‘assist the participant to make decisions for himself or herself’ and ‘ascertain what judgements and decisions the participant would have made for him or herself’. Nonetheless, it is necessary for a representative to have an explicit duty to support a participant to express their will and preferences.
5.78 While the focus of decision-making under the NDIS should be on supporting a participant to express their will and preferences, there is a need to make provision for circumstances in which a representative is providing full support in decision-making. In such circumstances, the representative must determine what the person would likely want based on all the information available. This may require engagement with the NDIA, service providers, family members and others to establish an understanding of factors such as the nature of decisions the participant has made in the past, and their values and beliefs. Where this is not possible, the representative must consider the human rights relevant to the situation, and make the decision that is least restrictive of these rights.
Appointment by the CEO
Recommendation 5–4 The National Disability Insurance Scheme Act 2013 (Cth) should be amended to incorporate provisions dealing with the process and factors to be taken into account by the CEO of the National Disability Insurance Agency in appointing representatives. These provisions should make it clear that the CEO’s powers are to be exercised as a measure of last resort, with the presumption that an existing state or territory appointee will be appointed, and with particular regard to the participant’s will, preferences and support networks.
5.79 In the ALRC’s view, the power of the CEO to appoint a representative needs to be retained. Problems may arise where an NDIS participant has no informal networks to support them, and no state-based appointed decision maker is available to be appointed as a representative. In the absence of the creation of some new Commonwealth body, similar to a guardianship tribunal, the exercise of the power to appoint a representative by the CEO may be necessary and desirable, provided that the power is subject to appropriate safeguards.
5.80 Despite the concerns of some stakeholders, the NDIS Act and Rules make it clear that the CEO’s powers are to be exercised as a measure of last resort, with particular regard to the participant’s wishes and support networks and the existence of state or territory appointees. However, given the importance of this issue, some of these provisions should be elevated into the primary legislation.
5.81 The NDIS Act currently provides that the CEO of the NDIA may appoint a plan nominee or a correspondence nominee at the request of the participant, or on the initiative of the CEO. The CEO of the NDIA must take into account several factors in determining whether to appoint a particular nominee. In addition, the CEO has the power to make an appointment for a particular period and power to limit the scope of the appointment. The Rules provide that:
It is only in rare and exceptional cases that the CEO will find it necessary to appoint a nominee for a participant who has not requested that an appointment be made. In appointing a nominee in such circumstances, the CEO will have regard to the participant’s wishes and the participant’s circumstances (including their formal and informal support networks).
5.82 This general principle is expanded upon in r 3.14, which provides that the CEO, when deciding to appoint a nominee must:
(a) consult with the participant; and
(b) have regard to the following:
(i) whether the participant would be able to participate effectively in the NDIS without having a nominee appointed;
(ii) the principle that a nominee should be appointed only when necessary, as a last resort, and subject to appropriate safeguards;
(iii) whether the participant has a court-appointed decision-maker or a participant-appointed decision-maker;
(iv) whether the participant has supportive relationships, friendships or connections with others that could be:
(A) relied on or strengthened to assist the participant to make their own decisions; or
(B) improved by appointment of an appropriate person as a nominee;
(v) any relevant views of:
(A) the participant; and
(B) any person (including a carer) who assists the participant to manage their day-to-day activities and make decisions; and
(C) any court-appointed decision-maker or participant-appointed decision-maker.
5.83 Rule 3.14 requires that the decision is taken with regard to the wishes of the applicant and in the context of available supports. The Rules also provide that
An example of a circumstance in which a nominee might be appointed without a request from the participant is where the CEO considers that the participant needs a nominee, but is unable to request appointment himself or herself, even with support. In such circumstances, the initiative might come from a carer or other person who offers to be the nominee.
5.84 Stakeholders expressed concern about provisions that enable the CEO or delegate to appoint a nominee on the initiative of the agency, rather than at the request of the participant. DANA, for example, submitted that the power is ‘largely unfettered’ and gives the CEO or delegate
considerable freedom to appoint or cancel appointment of a nominee with or without the agreement of the participant or respect for the participant’s wishes, with or without regard for any existing guardianship, power of attorney or other substitute decision-making arrangement for the participant, and most importantly with or without first seeking to support and enable the participant to make the required decisions for him/her-self. This appointment power appears to give little regard to enabling the decision-making capacity of participants.
5.85 Similarly, the National Association of Community Legal Centres submitted the current provisions give the agency ‘considerable power’ to appoint a nominee and do not require ‘consideration or facilitation of the decision-making capability of the person with disability’—and that such provisions should not be replicated under the Commonwealth decision-making model.