Other observations about participant safeguarding

We have formed further early observations on participant safeguarding, informed by engagement to date, previous reviews and inquiries, arrangements in other social services systems, and analysis of relevant literature and existing NDIS processes.

Natural safeguards are a necessity. Supporting and empowering participants to build their capacity, and building family and social supports in line with their preferences, is critical.

The NDIS has significantly changed how people with disability access services and supports in Australia. A key feature of the NDIS is ‘personalisation’ – each participant has an individualised plan, and typically is allocated individualised funding to achieve their own goals, and then exercises choice and manages risk in the market to access supports. This involves seeking information, communicating preferences, making informed choices about supports and services, and raising concerns when things go wrong or do not look right.

Personalisation under the NDIS has had benefits for many participants, including by supporting them to exercise choice and control over who provides their services and how. However, to reap these benefits, each participant needs to be able to advocate for their rights and safeguard themselves in a complex system in which there are many organisations and people.^[25] A participant needs significant knowledge, skills and resources to do these things. Access to family, friends and other supporters may help to reduce the burden on participants, provided the participant has an appropriate range of supporters with the right ability to provide that assistance and the participant wants their help. The NDIS should support every participant to build and strengthen their natural safeguards, a point acknowledged in the NDIA’s Participant Safeguarding Policy.^[26]

Other inquiries have touched on these themes. For example, the Disability Royal Commission asked the public what could be done to strengthen an individual’s natural safeguards.^[27] Responses noted the importance of mechanisms that build the capacity for participants to help protect themselves, promote their participation and visibility in the community, and enable more accessible advocacy support.^[28]

The initial vision for quality and safeguards in the NDIS – set out in the 2016 NDIS Quality and Safeguarding Framework (Framework) – involved a balance of different types of safeguards working together, with a focus on building capacity and natural safeguards for participants. As described in our issues paper on the Framework, this has not happened in a comprehensive way, with implementation of the Framework focused on preventative and corrective measures for providers and workers.

We believe that increased effort must be directed towards building participants’ natural safeguards. This will not look the same for all people. For example:

• Participants have the right to make decisions about what kind of, and how much, risk they might accept in the context of feeling safe. This is commonly referred to as ‘dignity of risk’.
• Participants live in a range of different family and community environments, and need safeguards to reflect this. What works to safeguard a child living with their family in a metropolitan area may not be what works to safeguard an adult living independently in a rural community and vice versa.
• There are differences in the typical size and composition of the social networks for people with intellectual disability, autism, psychosocial disability, sensory disability and physical disability.^[29] Promoting greater participation and visibility in the community, as well as community support networks, requires tailored approaches.
• Not everyone will find the same type of support helpful or necessary. For example, while many people will be more likely to raise concerns if they have knowledge of their rights or access to independent advocacy, other people will remain reluctant.^[30] This could be due to a range of complex factors including access to information or fear of having services withdrawn. Having different supports available is vital for responding to varying needs and preferences.
• Participants’ feelings about safety and preferences for support to be safe may also change over time, as their circumstances change.

Participant capital

A way of conceptualising the personal resources available to a participant to support them to advocate for their rights is the participant capital model, as shown in Figure 3 below. Understanding a participant’s capital can help to identify where attention should be directed to help them build, or strengthen, natural safeguards.

We consider that a model of ‘participant capital’ would likely offer a helpful frame for considering the needs of individuals to build natural safeguards. A ‘capitals’ approach also fits with NDIS capacity building and investing in participants.

Participants may benefit from the NDIS taking an approach to building natural safeguards that:

• Actively engages with participants and their chosen supporters about safeguarding, participant capital and natural supports relevant to their individual circumstances.
• Provides them with different safeguarding options to build their participant capital and natural supports, taking into account their individual needs and preferences.
• Monitors for issues that may change or emerge across participants’ lives and proactively offers support where needed to maintain natural safeguards, build new circles of informal supports, or intervene with formal safeguards as appropriate.
• Monitors how successful different approaches are to building participant capacity and natural safeguards, and seeks out opportunities to embed innovative approaches that work for participants.

NDIS safeguarding processes must be fit-for-purpose for participants to empower them to safeguard themselves, with the support of their natural safeguards.

We consider that while participants should be supported to build good natural safeguards, the system must also be straightforward to navigate. Without this, participants will struggle to build sufficient natural safeguards and self-advocate.

Participants will have varying capacity to advocate for their rights and manage risk in the NDIS due to the interaction of personal factors in their lives with the broader NDIS system. Around 60% of adult participants have conditions that could affect their decision-making capacity, such as acquired brain injury, intellectual disability or cognitive impairment, psychosocial disability or other episodic or degenerative disabilities.^[32] 42% of participants are aged less than 15 years and will likely need support to be heard in decision-making or may not be old enough to make certain decisions on their own.^[33] The complex decisions to be made in access, planning and implementation of plans can present risks to participants being able to exercise their rights and safeguard themselves.

Most participants who have raised concerns about their safety with us so far have focused on how supports, services, aids and equipment helped keep them safe and how the absence of these things made them unsafe. They did not strictly raise violence, abuse, neglect and exploitation. This mirrors findings of research by Purple Orange into the language and vocabulary used by people living with disability, in which significant diversity was observed in the way that different people with disability conceive of safety.^[34]

Participants may benefit from the NDIS taking an approach to supporting them and their supporters to act as natural safeguards that:

• Discusses risk and safeguarding clearly, framed by participants’ experiences.
• Understands that participants experience risk and safety as a continuum across all areas of their life, and will benefit from a cohesive picture.

Some participants will face higher risks and significant difficulty building good natural safeguards. The NDIS must have more targeted, intensive safeguarding options available to support these participants.

Some participants will face circumstances that place them at heightened risk of harm, due to the way that personal factors in their life interact with the broader environment. This includes difficulty in building natural safeguards that adequately support them to be safe.

The Disability Royal Commission and initiatives under the Safety Targeted Action Plan are considering what factors put a person with disability at risk of violence, abuse and neglect. Work through the National Disability Research Partnership has examined gaps and issues in the systems that support people with disability that can lead to harm.

Vulnerability is not inherent, nor isolated, to the NDIS, and actions to support participants in vulnerable situations need to be alive to this context. For example:

• Lack of support, finances, awareness, trust and gendered barriers to diagnosis may result in some people being vulnerable to not being able to access the NDIS.^[35] It is important that the NDIS and other service systems support those in vulnerable circumstances to access the supports they need.
• Some people with disability may be in vulnerable situations but do not meet the NDIS access criteria (for example, over 65 years of age, disability does not meet the threshold for, ‘permanent and significant’, do not meet residency requirements).
• Participants interact with and receive services and supports from multiple systems including education, health (including mental health), housing and community services. These interactions are increased for certain people at heightened risk of harm, for example participants with active drug and alcohol addiction, mental illness, psychosocial disabilities or who are engaged with the justice system.^[36]
• The Royal Commission into Aged Care Quality and Safety identified that many similar factors to those known to contribute to risk of harm for people with disability – such as social isolation, communication challenges and complex needs – also contribute to risk of harm for older people.^[37]

Recent changes (described above) have been made by the NDIA and NDIS Commission in their formal safeguarding roles, targeted to supporting participants facing heightened risk of harm. There are also systems within the NDIS to help participants manage NDIS-specific risks around putting together and implementing a support plan, including the ability to access Specialist Support Coordinators and the NDIA’s Complex Support Needs Pathway.

A number of reviews have called for more intensive, direct support for participants in complex and more vulnerable circumstances who have very low personal and/or social capital to support them to ensure a proactive and holistic approach to safeguarding their interests and wellbeing. Many have raised that a case management function, grounded in a social work approach, may be needed. Careful consideration needs to be given to who is best-placed to deliver that support, what it should deliver for participants, and how participants retain control. We are interested in views on this issue.

Participants may benefit from the NDIS taking an approach to supporting participants who may face more significant risks of harm that is:

• Aware of the broader issues that create risks of harm to people in our communities.
• Able to look beyond the NDIS-specific parts of a participant’s life.
• Tailored to the individual, and able to deploy different safeguards as needed.