Rebekha Sharkie (Mayo, Centre Alliance) Share this | Hansard source

More than 660,000 Australians benefit from the National Disability Insurance Scheme, and it's hard to believe it has been in place for a decade. One of those people is my grandson Liam, who is four. He has a version of mitochondrial disease, which means he lives with profound disabilities. He's unable to walk, move or talk and is fed with the assistance of a PEG. Life for this beautiful boy and his parents has been made immeasurably better because of NDIS support. While his plan is not elaborate by any means, it has made a difference in his life. For example, he now has a supported chair that enables him to be strapped in to sit upright so he can be more connected with everyone else in the room and strengthen his little muscles. He now has a bodysuit that assists with circulation.

I want to see Liam and every single person on the NDIS thrive, so I want to see the NDIS thrive. But I'm not sure that it's necessarily thriving at present. Each week, I hear from participants who are experiencing lengthy delays in dealing with the National Disability Insurance Agency, the NDIA. As the Minister for the National Disability Insurance Scheme is in the chamber, I must say that, as a member of parliament, I greatly appreciate the minister's staff and his department and their ability to problem-solve for the many constituents we receive requests for assistance from. But some do wait months on end for decisions, well in excess of the NDIA's own Participant Services Guarantee, with their circumstances becoming more dire over time.

I've also heard from people who are concerned about exploitation by some unscrupulous providers and the 'gold-plating' of equipment, so that a basic wheelchair now costs thousands of dollars. Just yesterday, after Senate estimates, we heard media reports about drugs, cars and holidays, and courts struggling to manage this. The minister himself has said he doesn't know how big this iceberg is, but it's potentially 10 per cent of NDIS funds. That is astonishing and must be addressed. So it's clear that reform is needed. We've heard this from participants and we've heard it from the independent review of the NDIS.

What will this bill change? The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 will clarify how participants access the scheme. It will clarify how plans are set and funds used, with a new reasonable and necessary budget framework comprising flexible funding and funding for stated supports at the whole-of-person level. It will try to address intra-plan inflation and set limits to prevent exploitation and coercion of some participants who may be vulnerable. Further, it will enable strong compliance and enforcement and prohibit involvement of banned persons in auditing quality under the scheme. These are valid aims, because we want the NDIS to continue into the future. We do not want a future federal government to end the NDIS and return clients to individual states where the support originally sat.

I think we do need to acknowledge that when this program started it had a price tag of around $4 billion. To quote the minister:

We want to make the Scheme fairer, more transparent, and more accountable. It is growing too fast. We believe that if we can moderate the growth of the Scheme, it will be there for future generations.

Future generations are what's important. The NDIS is currently the third-largest program as measured by total general government sector expenses, with estimated expenditure of $41.9 billion in the 2023-24 budget papers. Projections are that it will cost as much as $89 billion by 2031-32, not including operational costs. That is an estimated 2.55 per cent of Australia's gross domestic product.

I have to acknowledge that there are concerns with this framework bill, which sets primary heads of power in broad brushstrokes. In some areas it's a bit light on detail—and I do acknowledge the recent amendments that the government has tabled. A key concern—for many of us in this place, I think—is that too much has been put into delegated legislation and won't have the scrutiny which is the purpose of this place. I understand the desire for flexibility in responding to changing circumstances, which is limited when undertaking a full legislative process at every step. But, if these details are not in the primary legislation, the bill must be absolutely clear that development of and changes to delegated legislation, such as the NDIS Rules and ministerial directions, will require consultation and engagement with people living with disability and their families and advocates.

The community is seeking a guarantee of consultation and co-design, with express requirements in the bill to consult with people living with disability and their advocates, rather than simply 'having regard' to their input. Disability advocates are therefore seeking reassurance that participants will have input into the design of the needs assessment that will form the basis for preparation of a participant's plan. We don't yet know what highly technical assessment methods or tools will be developed or who will conduct these assessments. Disability advocates request a commitment that needs assessments will be conducted by health professionals with an understanding of the participant's or applicant's history and needs. I think that's critical.

Beyond this, I'm pleased that eight elements of support set out in the bill are taken from the United Nations Convention on the Rights of Persons with Disabilities, but I would like to see the bill also incorporate references to other convention rights, such as the rights to employment and economic participation, with all the benefits—not just financial—to individuals and society which this participation can bring.

I also accept representations that there will remain a need for some flexibility as to the nature of supports set out in the bill, in order to allow for individuals' circumstances. For example, while the explanatory memorandum indicates that air conditioning would not be funded as a support, we know that some disabilities, including spinal cord injury, brain injury, neurodegenerative disorders and muscular dystrophy, can render a person unable to regulate their body temperature, meaning they require such an aid to manage the impact of their disability on their lives. We need to have balance with this.

Disability advocates have also raised concerns that the ability to suspend an existing or new NDIS plan in the case of failure to comply with new, broader information-gathering powers should only be exercised as a last resort. I'm also advised that new constraints on expenditure and the ability to supervise participant spending should be used only if the participant is at high risk of noncompliance, rather than when a participant has perhaps inadvertently failed to comply in a single instance.

Despite my concerns, I do support the need for reform of the NDIS Act. If costs continue to spiral unchecked I'm worried that a future government will abandon the NDIS altogether and it may not survive. States and territories have largely vacated this field, overburdening the NDIS. It was not envisaged under the original agreement; nor does it make for a sustainable scheme. Let's not sink the only lifeboat in the ocean.

Ideally, the bill should not be voted on until members have an opportunity to digest the submissions made to the Senate Community Affairs Legislation Committee, with its report not due to be handed down until 20 June. We have seen time and time again the undermining of democratic process when we have the gagging of debate, and I'm very pleased that that has not occurred in this instance—although I feel that the vote on this bill is somewhat rushed. I call on the government to not vote on this bill until we have had the opportunity to look at that Senate committee report. I understand, though, that the reality of this place is that we need to get things through this place and then greater detail happens in the other place. I look forward to seeing what happens with this bill in the other place and then continuing that conversation in here.

In closing, I support this legislation and I am looking forward to a NDIS that is not the only lifeboat in the ocean and a NDIS that is there for future generations.

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