Getting It Right: A New Definition for NDIS Providers

February 2026

Introduction

Dementia Australia welcomes the opportunity to provide input to the Department of Health, Disability and Ageing’s consultation on the definition of an NDIS provider.

Dementia Australia is the peak body representing people of all ages living with dementia including people living with young onset dementia and the estimated 1,500 children living with childhood dementia in Australia, as well as their carers and families.[1]

Dementia is a progressive and life limiting illness that is now the leading cause of death in Australia.[2] In 2026, it is estimated there are 446,500 people living with all forms of dementia in Australia. Without a significant intervention, this figure is projected to increase to over 1 million by 2065.[3] There are an estimated 1.7 million Australians involved in the care of people with dementia.1

Young onset dementia refers to any dementia diagnosed in adults aged 18-65. In 2026, an estimated 29,000 Australians live with young onset dementia, projected to increase to an estimated 41,000 by 2054.[3]

People with young onset dementia often receive a diagnosis during prime working, parenting and financially demanding years. The condition’s progressive trajectory which is characterised by gradual loss of cognitive and physical function, means that support needs will increase over time. All people living with young onset dementia are potentially eligible for NDIS supports yet based on the latest data provided by the NDIS only a small proportion are accessing the scheme.

Evidence from Dementia Australia consultations with people with living experience shows that meeting the needs of people living with young dementia depends on a range of factors including dementia capability within NDIS provider workforce and continuity of trusted supports.

Dementia Australia recommends that the definition of an NDIS provider is not based solely on the type of service delivered but also takes into account the potential vulnerability of participants and the level of risk associated with their support needs. Regardless of how

1 Based on Dementia Australia’s analysis of the following publications - National Dementia Action Plan; Australian Institute of Health and Welfare (2024) 2023 Aged Care Provider Workforce Survey: Summary report, AIHW, Australian Government

supports are classified within a risk-based model, providers supporting people living with dementia should be required to undertake appropriate dementia-specific training.

Scope and clarity of supports included in the provider definition

The consultation proposes defining NDIS providers based on categories of support types. While this approach may support clearer regulation, it has potential implications for people living with young onset dementia, as risk should not be determined solely by the type of support delivered.

Supports that may appear low intensity and risk, such as domestic assistance, transport or community access supports, can involve significant risks for people living with young onset dementia. Supporting someone with young onset dementia depending on the stage of their disease, requires an understanding of cognitive functioning, behavioural and psychological symptoms, mobility limitations, continence support, and non-verbal communication including the recognition of pain or unmet needs. It also requires an understanding of the importance of consistency and familiarity but also the need to respond appropriately to changed behaviours and capabilities as needs change over time.

For example, assistance with shopping or transport may involve ensuring safety in the community, or responding to behavioural changes, which requires skill and judgement beyond the immediate task.

If these supports are consistently classified as lower-risk based on support type alone, this may result in reduced regulatory requirements, including lower expectations around training, capability, and oversight. This creates a risk that providers supporting people with dementia are not equipped to respond appropriately, potentially impacting safety, quality of care and participant outcomes.

Dementia Australia supports a provider definition that goes beyond support type and considers the needs and vulnerability of participants and the level of risk associated with their support needs.

Strengthening provider capability

The consultation proposes defining NDIS providers in a way that will enable a future system of mandatory, risk-proportionate registration. Dementia Australia supports the intent of mandatory registration to strengthen safeguards and provider oversight. The reform also presents an opportunity to strengthen provider capability.

While registration strengthens oversight, it does not necessarily ensure providers have the capability to support people with dementia. Providers that do not understand cognitive impairment and progressive conditions may underestimate risk or respond inappropriately, leading to poor practice and incidents.

Dementia Australia therefore recommends that registration requirements should incorporate training for providers supporting people with progressive cognitive impairment, including young onset dementia.

Potential disruption or secondary impacts

Consultation has indicated that people living with young onset dementia have diverse and complex needs, and that flexibility including the ability to use a mix of registered and unregistered providers has often been critical to achieving effective support, particularly in thin markets where unregistered providers may be the only available or affordable option.

Dementia Australia supports the intent of mandatory registration to strengthen quality and safeguards. However, there is a risk that increased registration requirements may reduce the available provider pool if smaller or sole operators are unable to meet associated costs or administrative burden. This may result in participants being unable to fully utilise their plans, or needing to reduce the frequency of supports due to higher costs.

Lived experience feedback consistently highlights that “losing current services” is a key concern in the context of NDIS reform. For people with young onset dementia, who often rely on a small number of trusted providers, disruption to existing support arrangements can impact safety and independence. At the same time however, continuity must be balanced with the need to ensure providers have the appropriate skills and capability to respond to increasing and changing support needs over time.

The consultation does not outline how participants currently using unregistered providers will be supported to transition under a revised provider definition. There is a risk that participants may be required to change providers if those providers do not register, potentially leading to service disruption and reduced continuity of care.

As the NDIS moves toward mandatory provider registration, it is important that the design of the provider definition and registration model considers the potential impacts on provider availability and participant access to supports, particularly in regional and thin markets. The model should incorporate appropriate transition timeframes, ensuring that regulatory settings do not unintentionally reduce access to essential supports, but still ensure regulatory safeguards proportionate to participant needs.

Additionally, there is currently no publicly available data on the quality and safety of supports delivered to people living with young onset dementia within the NDIS, including the incidence and nature of serious incidents. This lack of visibility makes it difficult to accurately assess potential impacts and determine whether proposed risk classifications are appropriate for this cohort. It will be important for the NDIA to draw on available administrative data, including incident reporting and quality outcomes, to inform the development of the risk model prior to finalising the provider definition and associated registration settings.

Conclusion

The proposed changes to the definition of an NDIS provider will shape how providers are regulated, how services are funded and how people with disability access supports into the future.

Dementia Australia welcomes the opportunity for further consultation and encourages meaningful engagement with people with lived experience of dementia, their families and carers in the design of future registration and regulatory models.

References

1. Childhood Dementia Initiative. Childhood dementia facts and statistics. 2025; Available from: https://www.childhooddementia.org/health-professionals/understanding-childhood-dementia.
2. Australian Institute of Health and Welfare, Dementia in Australia. 2025, Australian Government.
3. Dementia Australia, Commissioned AIHW Dementia Prevalence Data 2024-2054. 2023, Dementia Australia.