A fair, consistent and empowering NDIS experience

We have heard overwhelming evidence from participants and families that the participant pathway needs a wholesale overhaul. We agree.

This is required across the three key areas of the participant pathway:

1. Accessing the NDIS
2. Budget setting
3. Implementing a budget

A different approach is also needed for those who require early intervention support.

The current approach to accessing the scheme is inequitable and isn’t always targeted to those people with disability who require the most support

There are two pathways to access set out in the National Disability Insurance Scheme Act 2013 (NDIS Act): section 24 (disability requirements) and section 25 (early intervention). However, the introduction of diagnostic lists, known as access lists, by the National Disability Insurance Agency (NDIA) has meant there is an additional pathway. Through this pathway, some applicants experience very different evidence requirements to prove eligibility compared to those not covered by an access list. The key distinction between the different access lists is that List A and List D effectively provide automatic access based on diagnosis, while List B provides streamlined access based on diagnosis.

The lists have played an important role during the initial roll-out of the NDIS. They helped the NDIA manage its resourcing limitations and shortened wait times by helping decisions move more quickly. They have also continued to provide benefits after transition, such as ensuring more timely decisions and support for applicants with conditions that are clearly permanent and lead to substantially reduced functional capacity.

At the same time, the access lists have led to unintended consequences. Now that we are at full scheme, access lists are creating inequity between people with a condition on a list, and people with a similar level of need but with a different condition not on a list. This is driving access to be based on diagnosis, rather than functional impairment and need.

We have heard some applicants with conditions not included on an access list are not getting the supports they need because the access process is too complex or it is too difficult to gather the required evidence.

We have heard that the current Access Request Form is complex, particularly for those who are unfamiliar with the NDIS, its processes and jargon. Many questions are structured in such a way that interpretation is difficult for participants and treating professionals alike. There are additional barriers for participants from culturally and linguistically diverse backgrounds, those with lower levels of literacy, intellectual disability or limited informal supports due to its lack of accessibility.

Many people with disability who haven’t applied or had an unsuccessful application have indicated this is because “getting supporting documentation for the access request was too challenging”.⁷⁸ Decisions on access are too often being influenced by the amount or type of supporting evidence provided to the NDIA, rather than need. This favours better resourced applicants, those better equipped to navigate a complex process and those with strong advocates to navigate on their behalf.

The way participants receive NDIS funding is adversarial and leads to inequitable funding outcomes

The concept of ‘reasonable and necessary supports’ is a key driver of the current challenges with planning. Under the NDIS Act, supports must meet the criteria of being reasonable and necessary in order to be funded. However, this is a legally technical, complex, broad, discretionary concept that has irresolvable tensions.⁸¹

Reasonable and necessary was deliberately kept broadly defined in the legislation to enable the scheme to flexibly respond to individual need and circumstance. This flexibility of response has come at a price. There is a lack of clarity and confusion and what the scheme should fund is contested. This means reasonable and necessary can play out in inconsistent ways and creates an expectation gap for participants between what supports are wanted and what the NDIS can sustainably deliver.⁸²

The current approach of requiring every individual support to be considered reasonable and necessary has further compounded the problem. The confusion and contested nature of what is reasonable and necessary can therefore play out for every single support item for a participant. Planners end up in the middle of the expectation gap between what supports participants request and what the NDIS can fund. Planners rely on external evidence from treating professionals and providers to try and bridge this gap. This means supports are approved (or not) on the basis of the sufficiency of evidence and/or the ability of the individual or their family and supporters to advocate. This means funding is not always directly linked to need.

Many participants have told us that their experience of the planning process is stressful and traumatising. Participants and families point to the adversarial nature of the process, which often pits them against a planner who they feel is trying to limit their budget, rather than working to find the best way to support them. Planning meetings are described as negotiations or worse. Planners take a deficit-based approach to assessing need, and participants must present themselves in the worst light to better justify each support they are seeking.

Participants receive inconsistent and insufficient support to implement their plan

We have heard that participants are not being sufficiently supported to understand or implement their plan. While a significant amount of scheme resourcing is consumed managing the planning process described above, limited support is available to participants once a plan has been approved.

The plans provided to participants are inflexible and difficult to understand. They feature complex language and confusing support categories. The rules guiding how funding can be spent are opaque and confusing. We have heard participants find it difficult to understand exactly how their funds can be spent. Some are afraid to breach complex guidelines. This creates inequities between those who have learnt to navigate the scheme and those who require more support to make the most of their funding.

Itemised plans allocated to a multiplicity of support categories can disempower and frustrate participants. The NDIS was designed on an assumption of participants acting like empowered consumers in a marketplace. Instead, they face arbitrary barriers that disempower them and limit decisions on how to spend funding.

These issues are compounded by the culture of fear and mistrust that exists around plan reviews. Itemised plans work best when there are regular reviews to check they are still appropriate and can change if needed. They are not suited to long periods without being revisited. The NDIA currently conducts frequent plan reviews for participants to ensure items remain appropriate and are meeting need. However, many participants are fearful of plan reviews and will allow plans to roll-over to avoid having to go through a traumatising review process.

There is no specific approach for those who would benefit from and require early intervention

The original vision for early intervention in the NDIS has not been realised. The intent was to fund cost-effective interventions aimed at reducing the impacts of long-term disability by improving outcomes for people with disability and reducing long term costs. The Productivity Commission linked eligibility for early intervention to consideration of whether the intervention would be safe, significantly improve outcomes and be cost effective.⁹⁰

We have heard that access to the scheme through section 25 (early intervention) has been operationalised without a rigorous link between eligibility and the three key criteria: existence of evidence that early intervention for the participant would be safe, significantly improve outcomes and be cost effective. Early intervention participants appear to be predominately receiving the same approach as those who enter through section 24 (disability requirements).

There are also few mechanisms available to support participants to understand the purpose of early intervention, especially for adults. Participants are given little help to understand what good outcomes from early intervention might look like, what sorts of supports would best help achieve this, or how to adapt when a chosen approach is not working.