Bill Shorten (Maribyrnong, Australian Labor Party, Shadow Minister for the National Disability Insurance Scheme) Share this | Hansard source

by leave—I welcome this report on supported independent living and I commend the work of the committee members, including the members for Canberra and Corangamite, the Senator for Queensland Anthony Chisholm, the Senator for Tasmania Carol Brown and the government members, but in particular I acknowledge the good faith and diligent work of the committee chair, the member for Menzies.

The background to the report into supported independent living I think comes about because the implementation of the NDIS over the last six to seven years—I'm concerned that supported independent living has been drifting, this part of the NDIS. This is why the work of the joint standing committee is so important. I think there are challenges with the supported independent living program, and the 45 recommendations here provide a road map for significant improvement.

Supported independent living is one of the philosophical underpinnings of the whole National Disability Insurance Scheme. When I was involved in helping set up the NDIS, people with disabilities had been moved out of institutions, which was a good thing, but I don't know if there'd been sufficient thought given in the various jurisdictions about how to provide the best support for independent living. Too many accommodation options were the response to crisis. Too many accommodation options in supported independent living were the response to the midnight anxiety of what would happen to a beloved child when their ageing carer could no longer look after them. There were too many accommodations at the start of the NDIS which were not the right fit for people.

We still see thousands of people under the age of 65 with profound and severe disability stuck in nursing homes. We see accommodation options where people are put into group homes when they don't necessarily get on well with the other people who are in those houses. We see a lot of the carer systems quite overwhelmed at times, and a lot of families have reported to me feeling at loggerheads with the people providing the care because they feel that it's not sufficiently individualised to their own beloved person who the carers are looking after.

The aim of the NDIS was to provide packages of support and give people choice and control. I think with supported independent living what this committee has done is recognise that the goal of treating people as equal citizens and the goal of providing empowered care and control are not yet being sufficiently achieved. Funding for SIL, supported independent living, provides assistance with and supervision of daily tasks in the home. The program we're talking about, having said where the idea has come from, is designed to provide an NDIS participant with the capacity to live as independently as possible. As the report notes though, while only a relatively small number of the total 364,000 participants of the NDIS access SIL funding, the funding for these SIL packages does actually represent a substantial portion of the total committed funds of the NDIS. In other words, these are expensive but they're important.

What we have seen is the gradual journey from institutionalisation to group homes to more individualised living. But I think there are legitimate concerns. Since re-immersing myself in the world of disability following the election, many people have come to me—and I think the committee has articulated this very well through its research and report—and said that the current SIL regime suffers from various issues with the potential to undermine choice and control of participants and to affect the financial viability of providers. The financial status of a person should not be a barrier to accessing the NDIS or receiving support.

As this report notes, evidence submitted in support of an SIL application says that the application, the evidence, can be overlooked by the National Disability Insurance Agency in some cases. Participants complain to me, and this committee captures the same complaints, the planners may be failing to reflect the relevant evidence in a participant's plans. Or to put it in very plain English: families go and talk to the planners and then some of them receive plans which bear no relationship to the conversation people thought they were having with the planners. So the NDIA must implement the measures outlined here to address these issues as a matter of urgency. SIL is fundamental to the successful philosophy of the NDIS. It is an expensive part of the NDIS, but it is fundamental and necessary, so it behoves us to make sure that these resources are being allocated in a way that does provide choice and control.

The fact that there are 45 recommendations shows that, for all the sugar-coating, SIL is not working as it should be. There is too much red tape. Everything takes too long. I just want to explain, very briefly, the cycle of how someone with profound or severe disability can get supported independent living packages. First of all, they've got to get specialist disability accommodation. That's a separate pool of resources. Once they've lined up the property they're going to live in they then get the tick-off from the NDIA to access the supported independent living package, which is from another pool. But this process is taking too long, and there are consequences to this process taking too long. You've got people who invest in the new properties to build the appropriate accommodation. Now, some of them are big property developers with deep pockets, but others might be mum and dad investors and still others might be not-for-profits. The problem is if they then organise a team to provide this supported independent living—you've got to line up a group of workers; it's quite often seven by 24 coverage each week. So you invest in the property—you're not getting a return yet because you don't have a tenant or participant in it—you've then got to assemble an SIL team to look after you, and then the NDIA reviews all of this. The problem is that's triple handling, and this is leading to too long, too long, too long delays. I've spoken with families who've invested and who are frustrated. Bizarrely, in a very tight property market, the vacancy rate for special disability accommodation can go up from 15 to 20 per cent. Those vacancy rates don't exist in any other part of social housing, so there is clearly a problem.

SIL was meant to support the shift from one of the worst aspects of the old status quo, which was group homes. But it somehow appears the NDIA, in some cases—there are success stories too; it's not all doom and gloom—appears to encourage, if not require, participants with SIL to live in congregate settings. We know of several providers who have gone under because SIL participants have higher complex needs and, for operational costs, staff ratios are higher, and it just hasn't worked. People with disability don't all want to live in a cookie-cutter group home, and they bring with them a package of support, through the generously funded NDIS, which should allow that choice, but with the red tape and the triple handling it's simply taking too long.

These recommendations are therefore necessary and welcome. They should be put promptly into effect. It's part of the keyhole surgery which Labor is advocating, and this joint standing committee is also putting up. It is doing the work of proposing reforms to the NDIS. But my concern is that as we come out of the coronavirus situation the people with disability will get pushed down the queue again.

There are two big problems that we're encountering, and which this report will have to, as the NDIA, implement and address. One is that people with disability feel that the NDIS will be less generous, so if you don't spend all your money in the 12 months or the period of the plan then what you haven't spent you lose. They're worried there will be a contraction. They're worried the red tape and the delays that this report is trying to address will then become used as an excuse to decrease people's choice and control, to decrease the funding which is there. They're also worried, of course, about where the workforce for SIL is going to come from in the future.

But, having acknowledged all of that, this is a good report. The Joint Standing Committee on the National Disability Insurance Scheme proves that the parliament can work when people work together. We urge the government to expedite the recommendations in this report and to take that broader approach. They've said the right things about NDIS not being cut back, but we saw $4.6 billion taken from the NDIS in 2018-19 budget. There is an anxiety out there that, despite all this keyhole surgery we're doing through these reports, there will be elements in the government, in the executive as opposed to the parliamentarians, that will just simply wind it all back. That's why I think this report is another useful contribution. But we don't just need keyhole surgery; we also need to embrace the philosophy of the NDIS of choice and control.

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