What we have heard so far about participant safeguarding

Many participants, families and carers, as well as other supporters have shared their experiences, thoughts and ideas with us. They have raised similar themes elsewhere, such as through the Disability Royal Commission and the NDIA co-design and consultation processes to develop Participant Safeguarding and Supported Decision-Making policies.

There are some key things that we have heard to date about what participants and their supporters would like safeguards in the NDIS to do for them. These are only the early things we have heard so far – and we encourages you to have your say about how the NDIS should support participants to be safe.

Safeguards should be focused on protecting and promoting participants’ rights, particularly their rights under the UN CRPD.

Participants have told us that the NDIS should help them realise their rights.

• Upholding the rights of people with disability is a key objective of the NDIS.^[16]
• Despite this, there continue to be incidences of rights abuses. For example, 2,289 reports of alleged abuse and neglect and 1,471 reports of serious injury were made to the NDIS Commission between 1 October and 31 December 2022.^[17]
• Participants want safeguards to help ensure they can exercise these rights, including safeguards to prevent abuse, and to support them to make their own decisions, even when the decisions come with risk.

Safeguards should ensure participants have access to safe, high quality and skilled supports and services, and that participants are heard in the design and delivery of supports.

Participants have told us that they want to access quality supports and safeguards that meet their individual needs.

• Participants, families and carers want safeguards to ensure they are both physically and psychologically safe, as well as culturally and socially safe, when they use supports and services. For example, some people from diverse backgrounds have shared with us experiences they have had engaging support workers that share their cultural background, and how this has positively supported their ongoing connection to family, language, spirituality and culture. Safeguards should support delivery of safe and quality supports and services, without reducing access to culturally safe services.
• Participants, families and carers want safeguards to be adaptable to their needs, but need more information to help them make decisions – for example, more information to support them when they are choosing providers.
• Participants would like clearer information about who they can contact and how when they have a complaint, or when an issue occurs that they need to raise with somebody. Nearly 25% of complaints received in 2021-22 by the NDIS Commission were about matters referred to other regulators or oversight bodies more appropriately placed to respond to the identified issues.^[18] While people can submit complaints about NDIS supports and services to the NDIS Commission, it is less obvious who they can complain to about other supports or services (for example, universal or mainstream services they might use), or about the NDIA.
• Participants and their supporters seek help from various people if they have an issue with a provider, like talking to family or friends. They value the relationships they develop over time, whether informal or with their support workers. They do not always think of agencies like the NDIS Commission as the first place to go for information and advice.^[19]

Supports in plans are an important part of safeguarding, and should be designed with participants taking account of their varying circumstances.

Participants have told us that they can feel like the NDIA and NDIS Commission do not understand them, and that this can create situations where they feel unsafe. Participants want plans to take account of what they need to be safe. For example:

• Participants do not only face risks in the NDIS. Participants want the NDIS to work with the rest of the systems in their lives – for example, education and health.
• Participants value how the supports in their plans help keep them safe in their homes and in their communities – for example, a wheelchair can be a safe place to eat, and a trusted support worker can be a good safeguard for a participant when they are socialising out in the community.
• Participants, families and carers would like to see the NDIS do more to ensure supports are available to build their capacity to self-advocate, make their own decisions and manage risk. Only around 37% of participants feel able to advocate for themselves in the current system.^[20]
• Intersectional factors like a participant being culturally and linguistically diverse (CALD), First Nations, gender, sexuality and intersex status can interact in a way that can create higher risks for participants. In a scheme where many participants identify with these factors, cultural awareness and specialised resources like translation services should be available.^[21]
• Participants with sensory or intellectual disabilities want important information to be consistently available in accessible formats such as Auslan and Easy Read resources.
• Participants have told us about the importance of online communities to their wellbeing, and would like more support to be able to access the digital environment. This aligns with research suggesting people with disability are some of the most digitally excluded groups in Australia.^[22]

Supports and safeguards should be psychologically safe, trauma-aware and healing-informed.

Participants have told us that where they experience safety issues, they would like to be supported to not just manage the issue but also to heal.

• Participants want NDIS processes that recognise their psychological and emotional needs when they raise an issue or make a complaint, such as being heard and feeling their complaint is being responded to. This mirrors feedback received by the Joint Standing Committee on the NDIS that the NDIS Commission needed to better demonstrate to participants what steps it had taken in response to complaints.^[23]
• Participants want NDIS processes to support them to talk about their experiences as people with disability in ways that feel empowering.
• Participants, families and carers want processes to be more straightforward, as complex processes and decisions that are difficult to understand have impacts on their safety, health and wellbeing. Family members and carers also observe that the complexity of processes can impact upon their capacity to support participants.

Safeguards should be responsive when participants’ circumstances change.

Participants have told us that when their circumstances change, they may need more help from the NDIS to ensure they are safe.

• Participants would like more support to stay safe when their circumstances suddenly change – for example, when an informal carer or support becomes unavailable, or their personal or domestic circumstances change due to separation or loss of a job. Participants, families and carers have also stressed the importance of timeliness in responding to a change in circumstances, so that they can access supports as soon as possible when their needs change.
• Participants have also asked for an approach that is tailored to their immediate needs, like referrals to appropriate housing in natural disasters. Existing research has suggested that inflexible approaches to planning in crises can mean that supports do not meet the participant’s needs.^[24] This can create risks to their safety when they have lost key supports or are facing an active risk like a natural disaster. This also highlights the need to ensure continued service delivery by providers during a crisis.