Zali Steggall MP speaks to the importance of redesigning effective NDIS measures

6 Jun 2024

The NDIS came into being just over a decade ago. It represented a real change for many Australians living with disability. The core of the scheme's intent is that any Australian with a disability should be able to live a dignified life. The NDIS was envisaged as a safety net to ensure that individuals with adisability and their families would not be left behind. The scheme assists some 660,000 Australians annually, and a further 40,000 are working in NDIS related jobs. This is huge. The NDIS is now a part of the support system we offer to those who need support to make sure that they live in a more accessible and equal society.

But the scheme is not working as well or as sustainably as it could. We have before us a chance to start righting the ship. As acknowledged by the government and many in this place, the NDIS is at risk of losing sight of what it was originally intended to do. To many people, including those I represent in Warringah, the NDIS has become a source of frustration, pain and anger as they engage with the bureaucratic system. Redesigning the NDIS to be a cost-effective and efficient administrator that consistently delivers meaningful outcomes for those supported by it must remain our key focus in this process.

I've had many constituents in Warringah contact me around their engagement with the NDIS and their concerns but also their challenges and success stories. There are many disability services and NDIS providers in my electorate that deliver essential services and employment opportunities. My office is often in contact with those NDIS providers, working through issues and helping where we can. I am very grateful to the minister, his staff and his office for the time they have taken to engage with my office to help constituents but also in the process around this bill, the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024. The minister has partaken in a forum in Warringah; he came and answered many questions and spoke to many constituents. We hope to welcome him back soon for another forum to discuss the changes proposed in this legislation.

One of the real insights and highlights I've had in my job as the independent member for Warringah is witnessing firsthand the transformative power of programs that prioritise the voices of individuals with a disability. One of these local disability groups, Northside Enterprise, has a program called Bushlink. It employs people with intellectual disability to carry out environmental projects, focusing on bush regeneration. I recently joined their bush regeneration team out on the Long Reef Headland to learn more about the program. Northside has created a program that fosters meaningful employment and community engagement whilst also maintaining and protecting our natural environment; it is a win-win-win. That is exactly at the core of what the NDIS aspires to be for all those in the disability community.

There are many other wonderful organisations in Warringah, such as Pioneer Clubhouse, Cerebral Palsy Alliance and Manly House, to name just a few. They all do phenomenal work, and it's a real highlight to be able to visit them as a local MP. I've also heard, though, of the frustration from constituents who feel overwhelmed by the complexities of the NDIS and the lack of clarity around their plans and ongoing funding. Under the current system, participants need to supply constant medical reports to prove their conditions. Participants who clearly have lifelong conditions still need to regularly prove to the NDIS the ongoing nature of their condition. It's very costly, a time-consuming burden and very emotionally draining for so many participants—and, I would say, the staff of the NDIA.

There have been several cases where my constituents have been unable to supply, for example, medical reports on time due to long wait times to see medical specialists, alongside the often-great costs involved with these appointments and changes to places. Then, due to their inability to supply those medical reports within the deadline provided, participants have had their NDIS plan funding suddenly stopped or cut back. Some constituents have been lucky that they had a community of family and friends that could temporarily step in, but that's a postcode lottery, and it's not how people should receive the support that they need from the NDIS. At worst, unfortunately, some constituents have had to be hospitalised due to their funding being suddenly cut. That's incredibly unsafe for participants, but what's really disappointing is that, if the system were working as well as it could be, it would be completely avoidable.

I have another example from Warringah. One of the frustrations that constituents have with the current system is the lack of flexibility. I have raised this with the minister. Manly House are a wonderful service that provides specialist disability accommodation under the NDIS on the northern beaches. Their residents often need disability transport at short notice for different outings, including medical appointments. Due to the shortage in New South Wales of disability transport and accessible transport, especially public transport or taxis, residents would like to pool their funding to purchase a vehicle to make it much easier for them to plan their outings and live their lives as normally as possible. This is an initiative from Manly House to provide that service to their residents. Third-party transport can be unreliable, often not available at short notice and extremely expensive on the plans. One of my constituents in Mosman, Joey Sulfaro, is so frustrated by the situation in Sydney around this. He's found it so bad that he has started his own local transport service for people with disabilities. The current framework is too inflexible. It doesn't allow that pooling of transport allocations. We need more NDIA services that work for people and make their lives easier, not more difficult. I have advocated for Manly House to be able to pool their resources, but unfortunately to no avail. I note the minister is here, and I will renew my request for that flexibility to be allowed for transport allocations. It's the sort of issue that needs a common-sense approach to be applied, because ultimately there will be savings for government and for the program as a whole.

The legislation before the House is very much welcome. The NDIS review put into perspective the current state of the scheme and made many recommendations for how to right the ship and ensure it's more sustainable and fit for purpose and true to its original intent. The review also shed light on an operational culture that prioritised the wants of providers over the needs of participants. In short, some people were making a lot of money from the NDIS, whilst people with disabilities were often missing out. It revealed an overly bureaucratic and convoluted structure that served to disenfranchise and alienate individuals and their families.

The review made multiple recommendations, the core of which would be, if implemented, wholesale changes to the way people are assessed for support and the way their funding is then provided. The bill before us lays the foundation for implementing the review's recommendations. It also lays out the operational changes needed to make the scheme sustainable and fit for purpose in the years ahead. This is the part of the change that will alarm people the most: the fear of cuts and rollbacks. So it's very important that good, clear communication and engagement are rolled out by the minister, the NDIA and the department to ensure that participants understand and are taken on the journey. I don't believe that it is the government's intent to make cuts and rollbacks. In fact, the minister has been very clear in saying that they're not looking to knock people off the scheme but that they're looking to build efficiencies and sustainability into the scheme. I very much welcome that.

The cost of the NDIS has been increasing rapidly. Without modification, it's estimated that the NDIS will cost up to $100 billion per year by 2032. That just isn't sustainable and it must be managed sensibly, so I will turn to the details of the bill and what it's going to do. Broadly, the key changes which the bill focuses on are about how people access the scheme, how plans are created and how participants can spend the funds allocated to them. Of course, it's also about how the agency can step in if there are concerns that funds aren't being spent effectively and about the powers of the NDIS Quality and Safeguards Commission.

The first change to spell out is about how people are assessed to enter the scheme. The assessment will now be needs based and will form the basis for the overall budget or plan that a participant receives, rather than the current system, where items are basically added line by line. That has meant a very inequitable system, where people with similar disabilities have vastly different plan allocations for no apparent reason—it becomes a bit of a postcode lottery.

The needs based assessment will form the basis for the overall budget or plan the participant receives, but we still need clarity about how needs based assessments will be done and who will undertake them. Many in the disability community are unsettled by the lack of clarity and detail around this assessment. The NDIS review recommended that such assessments must be done by an appropriate a health professional or social worker, and the minister has acknowledged that the assessment will look at support needs as a whole. The near-universal feedback from the disability community is that it's concerned that the assessment won't be genuinely codesigned with a variety of inputs from those with a range of disabilities. This really is a concern; the government doesn't yet have the trust of the community on this front, it needs to be earned. This feeds into the wider issue at hand.

The second major change in the bill—and some say it relies on this excessively—leaves rules and determinations for another day, often to the minister. Whilst, no doubt, this will allow for a more flexible and responsive system to evolve than is currently the case, it's impossible to quantify the changes without further information or clarity from the government. This leads to great concern among participants.

Finally, it remains unclear what will be funded federally and what will be provided by the states and territories. This is another key change and state and territory governments don't appear to be willing to take on the responsibilities they will need to under this refurbished scheme. This lack of clarity remains concerning, and the states need to make sure that they're full and active participants in the scheme to make it work properly—for in the provision of disability transport. We know that this is the responsibility of state governments and that they haven't fulfilled that responsibility adequately to date. Again, transparency is absolutely needed here for the community to have confidence in the government's intentions with respect to the NDIS. I note that there have been a number of discussions, and further negotiations with the minister, about possible amendments from the crossbench. These have very much been led by the member for Kooyong and I look forward to the consideration in detail process that will follow.

It's so important for the government to get this right. The NDIS is an incredible legacy and we need to make sure it works—that it delivers as intended. There is more to do to improve this bill, and I hope the minister listens to the constructive amendments that are going to be put forward. I thank the government and the minister for his engagement to date. There's more to do on this bill. It's only the start, and there is going to be a long process of communication and engagement with the community to ensure the changes that are brought about by this bill are brought in as smoothly and effectively as possible for the participants and the workforce impacted by it.