Legislative Council: Wednesday, September 27, 2023


Social Development Committee: Inquiry into the National Disability Insurance Scheme

The Hon. I.K. HUNTER (16:07): I move:

That the report of the committee, on the inquiry into the impact of the National Disability Insurance Scheme (NDIS) on South Australians living with disability who have complex needs and are, or are at risk of, residing for long periods in inappropriate accommodation, be noted.

I would like to take the opportunity in the council to acknowledge and thank all of those who have contributed to this inquiry. On behalf of the Social Development Committee, I thank the state and commonwealth government agencies that gave evidence to the inquiry: the Department of Human Services; the Department for Health and Wellbeing, including the local health networks; the Women's and Children's Health Network; the commonwealth Department of Social Services; and the National Disability Insurance Agency (NDIA).

I would also like to express my thanks, and thanks on behalf of the committee, to the state's Disability Advocate, Dr David Caudrey, for his work in this area; the Commissioner for Children and Young People, Ms Helen Connolly; and the Guardian for Children and Young People and Training Centre Visitor, Ms Shona Reid. Thank you also to Professor Richard Bruggemann, a passionate advocate for people with intellectual disability and a man whose advice we came to rely on.

The committee further wishes to thank the Summer Foundation and the Housing Hub for their submissions and ongoing work in this space; the Disability Advocacy and Complaints Service of South Australia; the First Peoples Disability Network; OARS Community Transitions; and Seeds of Affinity. There are many other non-government organisations who provided valuable evidence to the committee. We thank them too. They include the Mental Health Coalition of South Australia, the group of Uniting services, AnglicareSA, Brain Injury SA, Minda Inc., JFA Purple Orange and the Multicultural Communities Council of South Australia. We would also like to thank Dr Bronwyn Morkham and Mr Alan Blackwood of Young People in Nursing Homes National Alliance for their work and their contributions.

Lastly, and most importantly of all, I would like to thank, on behalf of the committee, those individuals who have shared their own personal stories of living with a disability, and the families and carers of those individuals who have shared that journey through the NDIA system. This includes the family of Mr H; 'Karen' and her brother Phil and her support coordinator, Elizabeth; Mr Allan Hunter; Ms Elizabeth Mann and her son, Luke; Ms Libby Crawford; and Ms Lisa Murray. Thank you for giving the committee insight into what you had to endure. Your evidence was compelling. As the Presiding Member, I also of course wish to thank the members of the committee and the secretariat for their work during this inquiry.

As a result of the inquiry, the committee has made 53 recommendations to the government of South Australia through the Minister for Human Services. It is a great privilege for me to speak to the 46th report of the Social Development Committee today. The committee notes there has been a lot of work done to improve the NDIS for some 600,000 people across Australia who receive supports through the scheme.

By way of brief summary of what is happening at the national level, in early October, it is expected that the panel on the Independent Review of the NDIS, led by Professor Bruce Bonyhady AM and Ms Lisa Paul AM, PSM will hand down its final report to the Australian government, and the committee is anticipating this very keenly.

The committee notes also the work of the Senate Joint Standing Committee on the NDIS and understands the JSC will produce the final report concerning the capability and culture of the NDIA in due course. This week, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, which was established in 2019, will be reporting. The committee looks forward to the recommendations of the royal commission and seeing those implemented by the national government.

By now, I think most honourable members would have heard of the inhumane practices that are present in a number of NDIS service providers, as reported by the ABC I think on the Monday night Four Corners program, and of the failures within the NDIA that have led to participants having less than ordinary outcomes and, in some cases, traumatic and very detrimental outcomes.

That is not to say that the NDIS has not been worthwhile. It has been a life-changing scheme for many Australians and the committee welcomes that outcome in the lives of so many Australians living with a disability. Yet still, for some of the most vulnerable in those communities, it has not delivered the promise of an ordinary life. There is still work to do.

Some participants have been forced to live in situations that have caused them harm. They have been left living in degrading circumstances, at times with too many co-residents in group homes, or with service providers unwilling or unable to provide adequate care and support. The committee acknowledges some of the work needed to address the issues that have arisen during our inquiry and that are referenced in the report have already commenced as a result of previous inquiries in other jurisdictions. The committee acknowledges the work of the South Australian government to address the ongoing housing crisis and the work it has done to improve the availability of short to medium-term accommodation for participants exiting hospital, such as the Regency Green facility.

The committee has received evidence from people living with disability, NGOs and advocates that South Australians who live in rural and remote areas face additional challenges in accessing supported accommodation and the support services that they need to build around them. To that effect, regional and rural participants have less opportunity to exercise their choice and control. This is even more the case for Aboriginal and Torres Strait Islander people, whose needs are not being met because a market-based approach, which was originally envisioned, will fail in regional, remote and outback locations, at least in South Australia.

The committee heard there are other gaps in the system that need to be filled and there will continue to be an ongoing need for mainstream services that support people with a disability, even if they do have an NDIS package. This presents unique opportunities for the government of South Australia to step in when needed and fill these gaps, and to work with people with a disability and other stakeholders to develop and implement innovative and novel solutions that work for that individual.

A constant refrain heard from many of those giving evidence to the inquiry was the ongoing need for the state and federal governments to work together to specifically address accommodation needs of South Australians living with very complex disability needs. There also needs to be a renewed commitment to closing the gap in the accommodation opportunities for Indigenous South Australians here in the city but also in remote communities.

The committee has made a recommendation that the government of South Australia implement a co-design process to update the state's housing strategy, Our Housing Future 2020-2030, including a focus on housing that will be accessible to people who live with a disability.

The committee has also made several recommendations that the South Australian government works with the federal government to improve safeguarding mechanisms for children and young people—again, particularly in Aboriginal and Torres Strait Islander communities and for young people with disability and complex needs—and that the NDIS Quality and Safeguards Commission be given greater powers to investigate breaches.

Between 1 July 2022 and 30 June 2023, the NDIS provided funded supports to 610,502 participants across the nation, with a total cost of $34.7 billion. Of this amount, a total of $11.5 billion was in supported independent living (SIL) payments for 31,509 participants. Participants with SIL in their NDIS package make up just 5 per cent of the total number of participants Australia wide, but the total cost of SIL makes up 33 per cent of all NDIS costs.

In contrast, the total payments for SDA in 2022-23, which went to 23,092 Australians, was a fraction of the SIL cost, a total cost of $230 million or around 2 per cent of the total SIL cost. Approximately 8,400 participants receive SIL but do not have an SDA in their package, that is, supported accommodation.

South Australia's 2022-23 NDIS contribution under the agreement with the commonwealth was $874.4 million, and that was offset by in-kind contributions for supported accommodation services which was later revised to $711 million. The NDIS has the capacity to provide the funding for around-the-clock care and support to those participants with the greatest need, but there are participants whose need is very great but for whom, for many different reasons, the system that was set up to assist them has failed.

The committee received evidence during this inquiry to show that between 1 January 2021 and 30 June 2022 at least 71 NDIS participants presented to a public hospital for a non-health-related admission. There are also a significant number of other NDIS participants who will present to an ED or require an ambulance response for non-health-related needs but they do not progress to an admission in a hospital. This costs participants greatly in terms of their health and wellbeing, the time taken to service them, and it also costs the state's health system and diverts resources from where they need to be.

The committee understands that minimising non-medical hospital admissions requires a whole-of-person, a whole-of-system preventative healthcare approach, which pulls in many different service areas from government, non-government and private sectors, such as early disease management, mental health and other psychosocial supports, allied health, aged care and housing. Where other services cannot provide adequate or appropriate care, support or accommodation, the committee believes that the state must finally step in and assist.

It seems then that the state, along with the commonwealth, has a role to play in ensuring that South Australians can readily access mainstream services that will have a preventative action to avoid people ending up in worse situations, requiring more services later on and probably more costly services. This is especially important when we consider the cost of the combined discharge delay of 67,188 days, for the period of June 2019 to 31 December 2021, for 830 NDIS participants in South Australian hospitals.

While both state and commonwealth governments have taken steps to improve these figures, the numbers alone suggest there needs to be further work done—certainly in terms of processes for accessing NDIS, the SDA in particular, and SIL—and greater collaboration between the state and commonwealth government agencies.

Part of what makes the NDIS so unique is the participant's right to exercise their choice in relation to how they live their life, and not least of all, of course, in terms of where they live. Specialist disability accommodation is a funding stream under the NDIS home and living supports program, which can provide opportunities for participants to exercise their right to choice and control.

Whilst that works very well for many people, as we heard in evidence there are a number of people who fall through the cracks. The committee was informed that decisions about a participant's home and living arrangements could be in the hands of a person on the end of a phone who has never visited the participant in their own home, nor even met the participant. For these participants, their choice and control has been impacted as their NDIS plan meetings were conducted over the phone.

We understand that this was a particular problem during the recent COVID years, but it highlights for the committee and also for those giving us evidence that it is a very unsatisfactory way of handling an individual's choices and trying to give them some power over decisions made affecting their lives. The committee understands in some cases there has never been any face-to-face contact at all between some participants and the NDIA staff making decisions about their plans.

The same was said about the NDIS Home and Living panel, which decides whether a participant will receive specialist disability accommodation funding and what level of funding is to be granted. Many advocates raised concerns that there is absolutely no transparency in this process, and no information about the panel is provided publicly.

The training of NDIA staff, along with the agency's interpretation of the legislation in its policymaking, has been another area of concern highlighted throughout the inquiry. These concerns relate to the widespread degree of prejudice against people with a disability and complex needs, especially for minority cohorts such as those from CALD backgrounds, Aboriginal and Torres Strait Islander backgrounds, and people with a psychosocial disability. The NDIA is charged with an incredible responsibility and it was quite troubling to learn that such important decisions were being made in such impersonal circumstances.

It is not surprising that a new and large bureaucracy occasionally gets things wrong. It is also no surprise that so many participants who have challenged these decisions made by the NDIA have had those decisions overturned—in other words, they have won. The trick is, then, for the bureaucracy to learn from its mistakes, prove systems and not have so many of its decisions overturned at the Administrative Appeals Tribunal.

Support coordination is known to be important for people with complex support needs, yet the committee was informed that many support coordinators lack the essential skills expected of them. The committee heard that there is a need for increased scrutiny over these roles, meaning an increase in the minimum standard of training for anyone providing support coordination services. The committee has recommended this be mandated at the national level.

Concerns were raised about the evidence that is needed to support a person's SDA application. The evidence of specialist clinicians, allied health and occupational therapists is often required, but when it is provided it is not acted on for several months and then the agency gets back to participants and says the data that has been provided is out of date. They have to go back once again and provide additional evidence, which ends up being exactly the same.

Access and equity issues were raised in relation to the adequacy of the resources available for our hard to reach cohorts, such as people facing homelessness, CALD communities, people with experience of the criminal justice system and, again, Aboriginal and Torres Strait Islanders.

The committee has also heard that local area coordinators, whose role it is to provide service and support to people trying to access the NDIS for mainstream services, need to have their role redefined. The committee heard that in some instances there were cases of local area coordinators (LACs) having absolutely no understanding or experience with disability, and for people with complex support needs the LACs were not able to provide the degree of assistance required, which in effect was exactly their job. They could not do it; they did not have the prerequisites.

The committee heard that case management is not funded, nor is it part of the NDIS model of support. However, some submissions gave evidence about a need to reintroduce what we used to have in this state, and that is a one-to-one case management service for some cohort of participants who have very high needs. It would be very beneficial for the cohort and I would suggest, and I think the committee believes, it would be very beneficial for state-run programs as well. The committee has therefore recommended the government of South Australia work with the Australian government for the NDIA to implement case management for the small percentage of participants with complex support needs.

One of the key concerns highlighted during the inquiry regarding participants' funding packages for SDA was that the NDIA has been taking a cost-saving approach to its assessments of participants' home and living applications. Some submissions made by advocates commented that their organisations had witnessed participants being rejected for funding for SDL and SIL because it would not be value for money for the organisation.

Another issue that emerged in the evidence was the NDIA has started to place a bigger burden on families and carers, who are already stretched, through assessing familial relationships as an automatic informal support, hence reducing the amount of funding approved to that individual as a consequence. So an individual who has family support is actually going to be treated worse in terms of their funding than an individual with no such family support. That, we believe, was iniquitous. This has been especially common for parents of children and young people who have disabilities with very high support needs. It is an issue felt in the whole community.

The committee has recommended that the state government work with the federal government to urgently develop a policy and procedure to allow for flexibility to be built into the NDIS plan to respond to the fluctuating needs of children and young people over time. Evidence provided to the committee by the Housing Hub shows that time frames for SDA applications for NDIS participants in hospital can take from 60 days to 90 days, and in some cases even longer. The NDIA has been working on improving SDA decisions time frames and there has been a lot of work done with the agency following the 2019 David Tune review which saw implementation of the NDIS Participant Service Guarantee.

However, there still needs to be improvement in time frames, particularly when a person is in a state of crisis. The committee was advised that the Department of Human Services and the Department for Health and Wellbeing had implemented a coordination assessment team to facilitate hospital discharge for 169 patients in the local health networks across the metropolitan area from January 2022 to February 2023. The funding for this project was provided by the commonwealth and the DHS has been working with the NDIA to establish the model on an ongoing basis.

The welfare of younger South Australians in residential aged-care facilities has been raised over decades, but it is a significant and ongoing issue. The NDIS quarterly report to disability ministers on 31 December 2022 shows that there are 11 participants under the age of 45 and 13 participants aged between 45 and 54 in residential aged-care facilities in South Australia. Some advocates who provided submissions to the inquiry have argued that participants in these residential aged-care facilities are left to languish and the data changes are more likely to represent the younger people in RACFs who die before they are able to exit the system than those who have been able to find alternative accommodation.

According to research provided to the committee, reasons for younger people exiting from residential aged-care facilities who were under the age of 65 years Australia-wide in 2019-20 were approximately one in eight returned to the community, more than half died in the facility, 4½ per cent exited to hospital, 17.5 per cent moved to another residential care facility, and 8.2 per cent left for other reasons. For people under the age of 45 living in aged-care facilities, approximately one in seven returned to the community while 37.1 per cent exited due to death.

In South Australia, during the same period, approximately 65 per cent of people under the age of 65 years in residential aged-care facilities exited due to them dying. Evidence shows in South Australia young people under 65 in permanent aged-care facilities who identified as Indigenous as at 30 June 2020 accounted for 4.7 per cent of the total number—about 15 young people. South Australia also had 16 young people under the age of 65 who had English as their second language living in residential aged care.

The committee has made a recommendation that the government of South Australia work with the federal government to urgently integrate the housing outcomes and targets of the National Agreement on Closing the Gap and Australia's Disability Strategy to develop future housing policies and frameworks, including those under the NDIS and South Australia's Disability Inclusion Plan. It is not appropriate and it is not acceptable that people under the age of 50 should spend long periods of time in aged-care facilities. It is not appropriate that large proportions of them should die in those aged-care facilities without getting appropriate accommodation.

The committee has recommended that both governments urgently address achieving the younger people in residential aged care targets in response to the Royal Commission into Aged Care Quality and Safety and that the South Australian government work with the joint agency task force to ensure all South Australian people under the age of 65 with disability and complex needs who live in residential aged-care facilities have easy access to information they require to make informed choices.

For some participants who are successful in their SDA applications, the committee heard that this is not the end of the road in terms of gaining appropriate accommodation. Rather, it can be the beginning of an even longer and more painful journey. Participants and disability advocates describe the toll it takes to locate, apply for and 'win' SDA in a market that has not expanded as was envisioned originally. On the subject of an SDA market, witnesses provided evidence that the infrastructure for SDA is not adequate. There is not enough supported disability accommodation, or there is not enough of the right SDA for participants in South Australia.

To provide some insight into the numbers, in the quarter to 31 March 2023 there were 2,316 South Australian participants with an improved SDA funding in their plans, while there were only 1,287 enrolled SDA dwellings. There are also 621 South Australian NDIS participants seeking an SDA dwelling. The committee heard there may be many more South Australians who do not even know that the NDIA has a program to test for supported accommodation. We know this continues to be the case, particularly for people with a psychosocial disability.

The notion that an SDA market would be created out of demand from participants with SDA funding has not materialised—there is no market, certainly not in regional and remote South Australia. Housing for people who have a disability that requires very high support levels demands urgent attention from the state government. The committee would like to see and has recommended the government of South Australia continue to develop and implement a plan to address the shortage of long-term disability housing supply in South Australia.

The committee has further recommended that the government of South Australia work with the Australian government for the NDIA to develop a comprehensive market and workforce strategy, with short and long-term measures specific to our South Australian context. The committee heard numerous stories from participants and advocates that the NDIS has the ability to significantly benefit the lives of South Australians living with disability, who have complex support needs, including having a positive impact on their wellbeing.

The NDIS has empowered people with a disability to make choices over how and where they live, and this is enshrined in the NDIS Act and has been brought into practice through the SDA and SIL funding streams. But, at the same time, whilst recognising the massive positive impact in the lives of many people with disability, as I said earlier, there have been system failures that have caused detrimental outcomes for some participants and they have fallen through the cracks and there is nothing in the system that works to pick them up.

Accordingly, the impacts on wellbeing for these participants who experience living in inappropriate accommodation include a deterioration in their mental health; an increase in behaviours of concern, mostly around violence to themselves, to workers and other people with disability they might be living with; an impoverished quality of life; and an unreasonable burden of care on family carers, who then face burnout and have nowhere else to go because their funding package has been reduced because the family is caring for that person.

The committee heard that it is vital that participants have access to an NDIA advice and support service, and the availability of service providers outside regular business hours. When a person with a disability, a severe disability with complex needs, has an episode, a psychosocial episode, an episode of violence or violence is perpetuated against them, it does not necessarily happen in office hours. There is need for a response mechanism to be available at all times.

The committee understands that the evidence shows that one of the things that can improve the application and planning processes and serve to benefit participants is personal advocacy. For some participants, being able to have a one-on-one interaction with the person who is making decisions about their life and their funding can have a very positive impact on their sense of wellbeing. To that end, the committee has made a recommendation that the government of South Australia work with the Australian government to reinstate in-person meetings where the NDIA is to make any decision regarding any new or existing NDIS participants' home and living situation changes; there must be a person-to-person interaction—not over the phone, but directly.

Further, the committee also recommended the state government invest in an independent, individual, systemic and representative advocacy service in order to support people living with disability to achieve appropriate accommodation outcomes. Based on the evidence we heard, the report has shown that many changes to the NDIS in the last two years, including the introduction of the SDA, must be led by the Australian government working with states and territories implementing it, and the needs of different states and territories have to be taken into account in doing so.

There are still many issues that need immediate and longer term action. As I mentioned before, there have been about 20 inquiries into different aspects of the NDIS in what is a relatively new system of provision of services. For those South Australians who do not meet NDIS criteria for the SDA, there must be a viable accommodation option so that they are not forced to sacrifice their quality of life. For the South Australians who have fought to be funded for the SDA, there must be options for their accommodation that they themselves have a say on and a choice over, and a say on and a choice over who provides the daily support services they require in that accommodation.

To conclude, and in terms of the recommendation that we note this report today, I want to reiterate that we have made 53 recommendations to the state government through the Minister for Human Services that, if adopted and acted on, can provide relief to our state's disability populations, who have the greatest unmet housing need. They will provide opportunities for the commonwealth and the state to collaborate in achieving better outcomes—outcomes that are real and viable, that must move past what some would say is the outdated, institutional group home model of a bygone era. These were, of course, new models that were introduced in the last two decades, but their usefulness has been outlived.

The new models need to be co-designed with the participants. They have to be innovative. They do not need to be cookie-cutter, because we heard from Mr Hunter, I think it was, who took us into his home and showed us the modifications he had made, as a qualified engineer, to his home so that he could utilise it. He told us that those modifications would not be acceptable to the NDIS because they did not meet their standards.

The recommendations we have made in this report request the federal and state governments to work together to transition the NDIS, in terms of housing, from the most expensive part of their funding system for a very, very small cohort of people to one where we can actually put a little bit more investment into accommodation with the point that we may well be able to see a massive reduction in expenditure in other areas of the NDIS. I commend the report to the chamber.

Debate adjourned on motion of Hon. L.A. Henderson.