Pearls and Irritations

660 000 Australians are participants in the National Disability Insurance Scheme, and 400 000 work in NDIS-related jobs. Our country needs the NDIS, but it’s expanded too quickly in recent years, as state-based services have withered on the vine. 11% of five- to seven-year-old Australian boys, and 5% of five- to seven-year-old girls, are now NDIS participants. At the current rate of growth, its cost could increase to as much as $100 billion a year by 2032. This is simply unsustainable. The Disability Royal Commission, the recent NDIS Review, and the Parliamentary Joint Standing Committee into the NDIS (of which I’m a proud member), have been clear that the NDIS needs significant reform.

The legislation passed yesterday by the House of Representatives is a step towards that reform; it significantly revises the Scheme’s design and delivery. It moves us in the right direction, but much remains to be done to ensure that we ensure choice, control, and access to the reasonable and necessary supports that Australia’s NDIS recipients want and deserve.

In my previous professional life as a paediatric neurologist, I had a lot of experience with the NDIS. I saw its promise and its pitfalls. I saw the young quadriplegic adults able to move out and live independently with their peers for the first time – to spread their wings, find partners, have their own families – but I also saw some providers game the system, usually at the cost of participants. There are individuals – participants and providers- who have taken advantage of the system for personal gain, but there are far more people who are deserving of support but have found the scheme unnecessarily cumbersome, unresponsive, arbitrary, and capricious.

The Bill passed yesterday is the government’s first legislative response to the landmark NDIS Review of 2023, which recommended transformative changes to the planning process and the way that participants in the NDIS receive their funding. The Review also suggested that important policy positions in the scheme should be enacted in law, rather than the NDIS operational guidelines.

This Bill details how participants will access the scheme, and how their support needs will be assessed and funded. It introduces a new form of budget setting built at a whole-of-person level, rather than a determination line-by-line for each support item. It gives power to the Minister to develop a new set of legislative instruments – the ‘NDIS Rules’ – which will determine eligibility requirements, which care pathway (disability or early intervention) participants will enter, how needs will be assessed, budgets set, and decisions reviewed. The government has not yet released drafts of these Rules, so we do not know exactly what they will include. Much of the Bill’s practical impact on participants will turn on the content of those rules and determination.

In the previous iteration of the NDIS, too much was left to its operational guidelines. As presented, this Bill leaves too much to its as yet-unwritten Rules. This can be an issue with any piece of legislation, but it’s particularly problematic with this one given the particular vulnerability and anxieties of the disability community – anxieties which are entirely understandable given the community’s previous experiences with proposed independent assessments, the constant media attacks on the Scheme’s cost, and the recent pushback by states and territories regarding their involvement in provision of foundational supports.

Significant concerns with the draft legislation centred around the lack of stipulations regarding how codesign with the disability community will be conducted, absence of detail on how the States and Territories will enact early intervention services, and lack of clarity on how needs assessments and budget-setting will be conducted. The legislation doesn’t guarantee that assessments will be holistic rather than limited to support needs in respect of impairments meeting either the ‘disability’ or ‘early intervention’ requirements. It puts in place new frameworks for plans specifying staged release of participants’ funding, which could limit flexibility of access to plans – but could also protect participants from exploitation by dishonest providers. Its requirement that certain conditions be met before funds can be accessed could mandate use of specific providers; this could impact people in regional, rural and remote Australia, where there are thin to no markets and flexibility of funding is crucial to accessing support, and it could deprive self-managed participants of choice and control over their circumstances.

In the two months since this Bill was first presented to the House I’ve consulted widely with constituents, the health and disability community, peak bodies and legal experts. Many have expressed concerns about the speed of introduction of this legislation, but, equally, many acknowledged the need for change. Costs are blowing out, the government’s legislative agenda for the rest of the year is full, and there’ll be an election within 12 months. The Shadow Minister for the NSIS, Michael Sukkar, has offered constant criticism – but not constructive commentary – on how the Scheme could be improved. So, the peak bodies and legal experts have responded quickly in their submissions to the department and to the Senate Inquiry. The Minister has considered the NDIS Review and acted quickly to legislate its recommendations; we can’t complain about the speed of this legislative change unless we perceive a disinclination from the government to accept iterative feedback and to respond rapidly. I believe we’ve seen that in the last 8 weeks.

The Bill passed the House yesterday after a flurry of last-minute amendments to the legislation and the Explanatory Memorandum; activity which I think was a positive sign. In recent weeks the government has listened to feedback from the Senate Inquiry – it’s already removed a section limiting the supports fundable under the scheme, has clarified the wording around participants’ ability to review their plans prior to Agency approval, and has tightened the language around reviews and appeals. Minister Shorten yesterday presented two revisions to the Explanatory Memorandum and numerous government amendments in response to the feedback that I, peak bodies and other groups had presented to his department in the last fortnight. He accepted another amendment from me – for a legislated 5-year review – on the floor of the House. He’s indicated that he, his department and the Agency will continue to work with stakeholders after the Senate Inquiry reports on 20 June and beyond, as the legislation passes the Senate, and the Rules are developed and legislated.

In a reflection of the times in which we live, I couldn’t be in the House yesterday for the Consideration in Detail of the Bill – like many people in Canberra this week, I have COVID. My amendments were presented for me by Kate Chaney, the Member for Curtin. They were debated on their merits by the Minister after a number of speeches, many from the crossbench, reflecting the needs, concerns and suggestions of NDIS recipients and providers from our electorates. As it does at every opportunity, the crossbench consulted and collaborated to improve the legislation before us. Some of our suggestions were accepted, others not — but the Minister did listen. The law that passed is not perfect, and it’s not complete — but I believe it to be a step in the right direction.

All of us who care about the NDIS will need to keep actively reviewing this legislation as it proceeds. We’ll need to assess the delegated legislation in all its detail; such Rules can, in a limited timeframe, be disallowed if necessary. The House and Senate crossbench will continue to work with the experts, our communities and our constituents on this; we’ll need your expertise and support, and you’ll need our voices. We all still have power to effect change to this Bill, to protect and improve the NDIS. It feels a lot like democracy.

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