Support to empower people with disability to make decisions about their lives

The majority of participants in the NDIS require support for decision-making
The NDIS has increased the complexity of decision-making
Participants do not have access to high quality information to make informed decisions
People with cognitive disabilities have limited opportunities to participate in decisions about their lives
Support for decision-supporters has not kept pace with the increased demands of the NDIS
There are insufficient checks on nominees’ suitability and the supports they receive to execute their duties
The Panel’s vision: We must do more to support participants to exercise genuine choice and control and to be able to make decisions about their lives
Recommendation 5: Provide better support for people with disability to make decisions about their lives

The majority of participants in the NDIS require support for decision-making

The right to individual autonomy and to make one’s own choices are enshrined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Choice and control is also at the heart of the NDIS. People with disability have the right to access the supports they need and to be involved in decision-making about their lives. But without appropriate support, some people with disability are currently not able to exercise this right.

Given the majority of adult participants in the NDIS have a cognitive disability, many would benefit from support for decision-making. In addition, around 50 per cent of participants are children or adolescents and may require additional support, especially as they move towards adulthood.¹⁰³

The NDIS has increased the complexity of decision-making

Prior to the NDIS, people with disability had no choice over the services and supports they received. The introduction of the NDIS brought greater choice of services but also increased the number and complexity of decisions required by people with disability and their families to access supports.

The speed and complexity of the roll-out of the NDIS meant insufficient consideration was given to supporting participants and their families to make decisions. This has led to many participants with cognitive disability and those with complex communication support needs having limited opportunities to be involved in planning or decisions about the services that they receive. It has also resulted in significant growth in both formal and informal substitute decision-making.

…the advent of the NDIS has resulted in significantly increased use of the adult guardianship system. This is curious because consumer (not substitute decision-maker) “choice and control” is a bedrock principle of the scheme. But … the scheme results in a greater number of decisions needing to be made by the many NDIS participants and prospective participants who have impaired decision-making ability… For participants whose disabilities impact on their decision-making, there exists significant potential for them to be assisted to make their own decisions, rather than have others - including adult guardians - appointed to make decisions for them.

- Australia’s Public Advocates and Public Guardians ¹⁰⁴

We have identified challenges around access to support for decision-making, including lack of accessible information to inform decision-making, limited opportunities for people to develop decision-making skills, lack of appropriate support for decision-making (including independent support and access to trained decision-supporters), and nominees who do not have clarity about their roles and responsibilities or sufficient knowledge to support participants to be involved in decision-making.

Participants do not have access to high quality information to make informed decisions

A lack of access to tailored information and advice that is proportional to the complexity of the NDIS means many participants struggle to get the information they need to make informed decisions. We have heard repeatedly from participants how difficult it is to navigate the NDIS and access the information they need.

The information available to participants has not been clear and has not been conducive to decision-making, including: Poor training of NDIA staff at all levels, resulting in inconsistent and unreliable advice being provided by contact centre staff, LACs, planners and other. Absence of information about appropriate terms and conditions applicable to service agreements, resulting in confusing, lengthy and unenforceable contracts terms. Insufficient (and contradictory) publicly available information about how funding can be used, and public claims of participant rorting and “crackdowns resulting in participants being too afraid to make decisions and plan managers policing spending.

- Disability Legal Rights Service ¹⁰⁵

People with cognitive disabilities have limited opportunities to participate in decisions about their lives

Capacity building supports for decision-making are fragmented and availability varies across jurisdictions. Many of these supports are not appropriate for people with a higher level of support need or for those from diverse groups. This means they are not effective in breaking the cycle of exclusion.

Decisions about children and adolescents are often framed as being made in their best interests, rather than involving the person in decision-making. This can limit opportunities for them to develop and practice decision-making skills and navigate risk. Families are often unsure how to involve them more in decision-making. They are not provided with the information or advice they need on how to support the child or adolescents with decision-making and independence.

Adults with cognitive disabilities experience a similar lack of opportunities to be involved in making decisions about their lives. Decisions are often made for people with cognitive disability with little consideration of their preferences. This can happen for big decisions, such as where to live, or smaller decisions, such as how to spend time during the day (Figure 5). Less than half of adult participants aged 25 and over with intellectual disability (including Down syndrome) report that they choose what they do each day. This is significantly lower than the proportion of participants aged 25 and over in the whole scheme who report that they choose what they do each day.

Graph showing 48% participants with a primary intellectual disability (intellectual disability or Down syndrome) choose what they do each day, compared to 75% of participants with other primary disabilities.

There is currently no strategic approach to delivering and coordinating supports for people with cognitive disability to develop their decision-making skills. We have heard from advocates and families about the importance of having access to funded peer-support and self-advocacy initiatives to help people with cognitive disability to build their skills, experience and community connections.

Support for decision-supporters has not kept pace with the increased demands of the NDIS

People with cognitive disability often rely on family members and other supporters to assist them in making decisions about their lives. These informal decision-supporters are usually well placed to provide this support, given their knowledge about their person and their trusted relationship.

This does not mean it is easy for families. There is significant pressure on family members to take on the role of providing support for decision-making. A recent national survey of carers found that 83 per cent of family carers are providing support with decision-making.¹⁰⁷ Providing decision-support to a family member can be complex. It can be difficult for families to recognise differences between what the person with disability may want and what the carer or family thinks would be best for them.

We have heard that families and other decision-supporters do not have access to the training, information and resources they need. This can lead to substitute decision-making, where people are making decisions on behalf of the person with disability, occurring either informally or formally through a guardianship order.

Support workers or other paid staff also play a role as decision-supporters, even if they are not in a formal decision-support role. Workers will support people to make decisions about what they eat, how they spend their day or what activities to participate in. Many workers have difficulty balancing issues around the person’s autonomy and managing risk in their role. These workers are often not provided with the training they need to navigate these issues.¹⁰⁸

Access to support for decision-making is particularly challenging for people with cognitive disability who have little or no informal supports. They are reliant on providers or Support Coordinators who can have inherent conflicts of interest. The lack of independent support can have significant impacts on choices over services, with limited opportunities to explore options outside of their current providers or housing arrangements.

There are insufficient checks on nominees’ suitability and the supports they receive to execute their duties

Nearly half of participants with intellectual disability (including Down syndrome) have nominees in place who are able to act, or make decisions, on their behalf.¹⁰⁹ In some cases this works well and nominees act according to best practice approaches to supported decision-making. However, the design of the nominee provision leaves it open to misuse and the potential for abuse of participants.

Nominees have significant powers and therefore should be subject to appropriate checks as part of the appointment process. Currently, a participant can request a nominee be appointed and the National Disability Insurance Agency (NDIA) actions this without sufficient consideration of risk and suitability of the nominee. There is also no assessment of what support a nominee might require in their role.

Nominees are given minimal information and support after their appointment. Nominees are not provided with training, support or guidance, beyond the instrument of appointment, about how to execute their duties.

While many nominees are doing the right thing, there is little oversight to identify when nominees are not making decisions in the best interest of participants. In some cases, a nominee may be the only person in the person’s life outside of providers, which puts the nominee in a position where they could use their powers to perpetrate abuse or cease needed services.

I’ve come across quite a few times this year. I've been supporting someone with an intellectual disability who has a nominee, but their nominee is not listening to their will and preference, and the providers are listening to the nominee over the person who is receiving the supports. I've talked to the NDIS about this... and asked about getting people removed as a nominee, and they've just said it's not up to them; it's so difficult.

- Individual advocate ¹¹⁰

There are also complexities with how the nominee arrangements interact with other government-appointed substitute decision-makers. Under the National Disability Insurance Scheme Act 2013 there is limited recognition of the role of an appointed guardian or attorney with relevant powers. Unless appointed as nominees, guardians are not recognised under the legislation as being able to make decisions about a participant’s plan.

The Panel’s vision: We must do more to support participants to exercise genuine choice and control and to be able to make decisions about their lives

The NDIA should embed a best practice, rights-based approach to supported decision-making. This involves providing accessible information and tailored advice, building decision-making capacity of participants and providing the supports needed for participants to make decisions about their lives.

To achieve this, the NDIA should ensure participants have access to the supports they require. Need for decision-making supports should be assessed as part of the process of determining a budget and the risk assessment and safeguard building process. This should include considerations of the level of informal support available and whether it is reasonable and desirable for the family or others to continue to provide this level of support.

The Navigator should support participants to access the level of support they require, including as their needs fluctuate over time. These supports could include:

Peer-support networks (foundational support)
Self-advocacy groups (foundational support)
Tailored training (foundational support)
Assistance to explore, set up and maintain networks of supports (NDIS funded support)
Funded independent decision-support (NDIS funded support).

Participants, families, nominees and other decision-supporters should be provided with access to high quality information and training to support them in their roles as decision-supporters. This would help participants access higher quality support for decision-making and reduce substitute decision-making. This approach would assist in maintaining informal supports. There should also be better support for participants to establish circles of support or Microboards. Nominees should also be provided with better information, support and training about their role, with appropriate oversight in place.

Recommendation 5: Provide better support for people with disability to make decisions about their lives

* Legislative change required

Action 5.1: The National Disability Insurance Agency should ensure participants receive accessible information and tailored advice to support informed decision-making. The Navigator should be responsible for ensuring participants receive accessible information and advice to inform decision-making, including connecting participants to other advice services. In addition, all communications from the National Disability Insurance Agency (NDIA) to participants and families must be provided in accessible formats aligned with participants’ communication preferences. This should be supported by ensuring NDIA staff and Navigators have completed appropriate training on accessible communications. These changes should occur in parallel to additional support for decision-making for participants with a cognitive disability or complex communication support needs (see Action 5.2).
Action 5.2: The Department of Social Services and National Disability Insurance Agency should both ensure those with cognitive disability or complex communication support needs are connected with capacity building support and other lifelong opportunities to build decision-making skills and experience. The foundational support system should include funding for programs and initiatives that help to build decision-making capacity and independence for participants with a cognitive disability or complex communication support needs. At a minimum, this should include self-advocacy, peer-support, and training. It should include a disability led mechanism to support a coordinated approach to self-advocacy networks and peer support, as well as training on supported decision-making delivered by disability organisations. Within the NDIS, there should be support for participants to build networks to assist in support for decision-making (such as circles of support and Microboards) as well as informal networks to aid decision-making and increase social connections.
Action 5.3: The National Disability Insurance Agency should include an assessment of participants’ need for independent decision-making support as part of budget setting and ensure participants can use their NDIS budgets to access independent decision-making supports. Need for decision-making supports should be assessed as part of the process of determining a budget (see Action 3.4) and the risk assessment and safeguard building process (see Action 16.2). This should include supports for participants to build and maintain decision-making support networks and access independent decision-supporters where required. Where participants with little or no informal supports receive funding for decision-making supports, this should be provided independently of other service provision to embed natural safeguards and ensure participants are able to consider different models of support and housing. Information must be available to participants, nominees, and Navigators about options to purchase supports for supported decision-making with NDIS budgets. Participants should be allowed to use their NDIS budgets to fund independent decision-making supports and establish decision-support networks (such as circles of support). Independent decision-supporters should be NDIS providers and required to be registered, consistent with the broader regulatory model (see Recommendation 17).
Action 5.4: The Department of Social Services, the new National Disability Supports Quality and Safeguards Commission and National Disability Insurance Agency should ensure decision-supporters have access to information, training and resources to assist them in providing best-practice support for decision-making. Navigators should link decision-supporters to information and training to assist them in their role. They should also guide participants to access decision supports to ensure the participant is involved in decision-making and are supported to access capacity building foundational supports (see Actions 5.1 and 5.2). To enable this, Navigators should have access to a central repository of curated evidenced-based resources and training coordinated by the Department of Social Services.
Action 5.5*: The National Disability Insurance Agency should reform the approach to appointing nominees, provide improved training and information to nominees, and increase oversight of nominee decisions. The NDIS Nominee Rules should be reformed to ensure there is a more rigorous assessment of the need for and suitability of a nominee prior to appointment. Once appointed, the nominee should be provided with information, evidence-based training, and guidance for complex matters or concerns. This should ensure they fully understand their role and responsibilities and are supported to perform their role consistent with the participant’s will and preferences.
To improve oversight of decisions, the Navigator should undertake an ongoing monitoring role of nominee appointments, as part of a more structured review process to be conducted by the National Disability Insurance Agency (NDIA), to ensure participants and family are getting the support they need to make decisions about the NDIS.
The Department of Social Services should work with state and territory governments, participants, advocates and nominees to address the conflict between other substitute decision-making schemes and nominee appointments. Consideration should be given to changes to the NDIS Act and NDIS Rules to recognise guardians and attorneys, to the extent and for the period articulated in their appointing instrument, as having the same ability to take actions on behalf of participants as plan nominees (without being appointed as plan nominee). In the event of a conflict between an appointed guardian or attorney and a plan nominee, the NDIA should consider removing the plan nominee, for the duration of the appointment of the guardian or attorney.