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

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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

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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.

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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
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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.

Figure 5: Proportion of participants aged 25 and over who choose what they do each day106

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.

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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.

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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.

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