The National Disability Insurance Scheme is failing many Australians with profound disability. More than 43,000 people with intensive support packages are seeing little benefit from a scheme that was supposed to give them greater choice and improved independence.
Last year’s reports from the Disability Royal Commission and the NDIS review called for significant reform and a wider range of housing and support services. But neither report provided a clear and detailed roadmap to improve people’s safety and give them alternate options.
And the federal government’s recent response to the Disability Royal Commission has kicked some of the more ambitious recommendations made by some commissioners to phase out group homes into the long grass for further consideration.
So how can the government improve housing and support for Australians with intensive needs? Grattan’s latest report argues for four major reforms to improve NDIS housing and living supports. In this podcast, host Kat Clay is joined by report authors, Sam Bennett and Hannah Orban.
Transcript
Kat Clay: The National Disability Insurance Scheme is failing many Australians with profound disability. More than 43, 000 people with intensive support packages are seeing little benefit from a scheme that was supposed to give them greater choice and improved independence. Last year’s reports from the Disability Royal Commission and the NDIS review called for significant reform and a wider range of housing and support services.
But neither report provided a clear and detailed roadmap to improve people’s safety and give them alternate options. And the federal government’s recent response to the Disability Royal Commission has kicked some of the more ambitious recommendations made by some commissioners to phase out group homes into the long grass for further consideration.
So how can the government improve housing and support for Australians with intensive needs? Our latest report argues for four major reforms to improve NDIS housing and living supports. And with me today are the report authors, Sam Bennett and Hannah Orban. Welcome to you both.
Sam Bennett: Hi there, Kat. Good to be here.
Hannah Orban: Thanks, Kat.
Kat Clay: Sam, the report is called Better, Safer and More Sustainable Housing and Living Support in the NDIS. Why does housing and living support need to be better, safer and more sustainable? What’s going on right now? I don’t know.
Sam Bennett: What’s going on right now, Kat, is basically what’s been going on for several decades and therein lies the problem.
Because people in this group should have every right to expect that ten years after the NDIS in Australia, things would be better, and things would be different. But for most people, that really isn’t the case at the moment. This is a group of people that we don’t hear an awful lot from or about, but they are the people that have the highest level of need for support from the NDIS.
More than 43, 000 people, have these intensive housing and living support packages. And really the only option currently available to most of them is to live in a group home. And we know from the Royal Commission, And the copious testimony that they heard that they’re at high risks of violence, abuse, neglect, and exploitation.
In those settings, it’s also really hard to see how they get some of the real benefits that were supposed to come from the NDIS of being more connected to the community and having greater independence and choice in their lives. And for all of that, the costs are absolutely sky high. We’re talking $15 billion in the last financial year alone.
Average costs of over 350, 000 and that’s almost 40 percent of the total cost of the scheme for only 7 percent of its users. So that’s the real nub of the problem in terms of what’s going on right now. People don’t have many real choices. The choices they do have are often unsafe and low quality and they cost a huge amount of money to boot.
So, we’re showing in our report that it’s possible to do a lot better for these people in ways that are efficient for the public purse. And we argue that getting the scheme working well for this group should really be the litmus test for any government seeking to get the NDIS back on a sustainable track.
Kat Clay: Yeah. And we’ll talk more about that throughout this podcast, but Hannah first, who is the report about and what kind of homes are they living in?
Hannah Orban: So, we’re talking about a small group of people who need intensive housing and living supports. It’s about 7 percent of all NDIS participants, which as Sam said, that’s about 43, 000 people in a scheme that serves about 660, 000 people.
So, this is really the core group for the NDIS. It’s the group of people that it was really set up for people with severe and lifelong disability who need really intensive support. Just over a third of this group have intellectual disability while about another 20 percent or so have cognitive disability, autism or psychosocial disability. And then there are other disabilities such as spinal cord injury, acquired brain injury, and other physical or neurological disabilities. And this group need at least eight hours or more of support per day and often support overnight as well. So given the intensity of their support needs, NDIS packages for this group add up to nearly two fifths of the total cost of the NDIS, which we estimate to be about 15 billion in 2023, 24.
So as Sam said, that means about 7 percent of people in the scheme have packages worth about 37 percent of total scheme cost. We always expect. In an insurance system that there’ll be disparity where a small group of people receive a disproportionately large number of resources. However, for this price tag, we really expect to see quality services.
Safe services and value for money and people with disability deserve this and they deserve options as well. You can’t have genuine choice without options. Unfortunately, we’re seeing a lot of the opposite. The NDIS regulator looked into group homes and found really high rates of violence, abuse, neglect and exploitation, which is just unacceptable.
And many people who need these intensive living supports live in group homes. And these are homes where people with disability live together so that they can share support. So, you might have a house with five people with disability living together and maybe one or two support workers on site 24 seven.
It’s cheaper to run them this way because instead of five people having an individual support worker in their home, they live together and split the cost. That’s perfectly reasonable. There’s nothing wrong. with living together, it’s really the culture of group homes. That’s the problem. So, they tend to be like many institutions where it’s run more as a service facility than it is as a home.
and people who live there don’t always get to have a lot of agency or choice about how their life is run when they get up. You know what they eat, who provides them with support. And sometimes that support is, is personal care. You know, it’s getting in and out of the shower, getting dressed using the bathroom.
So, I think, you know, we would all, all of us would want to have choice over who was providing us with care like that. So that’s sort of what happens in these settings. And often a group home is the only option. Available to people who have these really intensive support needs, but there are innovative ways to offer intensive support, and it doesn’t have to cost more.
And that’s really what our report is about.
Kat Clay: So, Hannah, how did this proliferation of group homes happen?
Hannah Orban: There are two reasons we ended up here. Two main reasons that we ended up here. The first is that deinstitutionalization is unfinished business. So, people with profound disability in Australia, not all of them, but some of them used to be.
Effectively warehoused in large institutions where they were sort of cut off from a lot of society. People didn’t really know what was going on behind closed doors. They were very segregated settings, and they were often large, you know, upwards of 20 people living in, in an institution. And from the sort of 1970s onwards in Australia and the UK and the U S there was a movement called deinstitutionalization where people with disability and their friends and family got together and decided.
We don’t want to live this way anymore. And so, deinstitutionalization started as a process along that journey, group homes became one of the solutions because they’re much smaller. Typically, it’s, four to five people living in a house together and group homes are also economical because people are sharing support.
So, there’s an economy of scale in group homes. Whereas if everyone were living in their own house with a support worker, that would obviously cost a lot more money. So, Economy of scale is a good feature of group homes, really, you know, it does mean that they’re more cost effective, but the issue is really that institutional culture that has proliferated in these settings, and we haven’t gotten rid of that yet.
So, in the report, we talk about the fact that in Australia, we really need to move away from group homes once and for all and finish this process of deinstitutionalization. But it’s perfectly reasonable for people with disability. to want to live together and some people may want to share supports as well.
So we are saying to government that they should focus on creating share houses where people with disability are in the driver’s seat, they get to choose where they live, who they live with and who provides them with support so that people who do want to live together and share supports can do that. In a way where they have agency and choice.
Kat Clay: Yeah. And that’s something we’re going to get into, I think. one of the most interesting things about reading this report is reading about the innovative living arrangements that you’ve researched from around the world. And Sam, I was wondering if you could talk us through a few more of those, that you’ve found and that are effective.
Sam Bennett: Yeah, thanks, Kat. So yeah, we need we need alternatives. People need to have options in the scheme, and they don’t have them at the moment. And you’re right. We had a good look at what those look like both in pockets in Australia, but also to a larger extent overseas. And it was important in doing that, that we also, for the first time, put a cost to them.
So we’re able now to actually see which of those alternatives are ones that are going to be viable, that are going to deliver good outcomes for people, but are also going to do that in a way that’s efficient for the scheme, which is really important in this very expensive part of, the NDIS. The main focus in our report is on what we’re calling individualized living arrangements.
And that’s a catch all term for a range of different ways that people with intensive needs can get support, which is differentiated really from a group home in three main ways. First is that it’s about people living in ordinary homes in the community and they’ll have chosen the people that they’re living with.
In those homes. Second is that they’re not required to share support with other people within the home as a feature of that service setting. And then third, that they do that in a way that is still cost effective because They utilize a whole range of different kinds of support in the way that the package works.
And we talk about that in our report in relation to what we are calling semi-formal support. So, a lot of support in the scheme at the moment is formal support. And I mean by that it’s, it’s paid support by support workers. it’s often rostered. So, people coming into the home to provide support when people need it in a group home.
People also get informal support if they’re lucky and they have family and friends around them. And the scheme can leverage that as well within people’s support packages. But what we don’t see is what we’re calling semi formal support. So this is support that people get, which comes about as a result of where and with whom they choose to live, whether that’s in somebody else’s family home, a host, a family that’s invited them to share their lives under their roof or it’s in the person’s own home, a rental or a home that they own with a housemate that’s providing some support that comes about as a result of them living together in that kind of home arrangement.
And this is something that really doesn’t happen very much in the NDIS at the moment. But when we looked at what’s happening in other parts of the world, it’s really central to how people with intensive needs get a really good deal from these kinds of systems, really cost-effective support that delivers on them being able to live an ordinary life in the community.
And I think When we looked at other places in Canada and the UK and parts of the U. S. We talk about in our report. These are places with a much lower level of investment, actually, than Australia is made in disability through the NDIS but we’re lagging behind them in how we support some of our most vulnerable citizens.
At the moment, there are more than 10, 000 people in the UK that are in what they call shared lives arrangements, which is a host family type model that I just described in British Columbia. Yeah. in Canada, there are many more people supported in what they’re calling home share type arrangements, living with housemates that are providing them with some support.
And we see in all of those cases that there are some great benefits that come from that. And we’re not saying semi formal support should replace formal support for everybody all of the time, but where it forms part of the package, there are really good outcomes from that. People have less reliance just on paid workers.
They have more unpaid relationships in their lives. It’s cost effective, and they’re just doing more of the things that the NDIS was all about sort of living ordinary lives in the community being included, integrated within ordinary homes rather than in group home settings as happens today. So, we think there’s a there’s a big place for these types of arrangements in the NDIS far more than there is. Okay. At the moment, and we’ve set out some practical ways in our report for how these can be grown and spread, including a new rental subsidy for people wanting to leave, leave group homes or who have intensive needs, but don’t get specialized housing support from the NDIS.
At the moment, we think there’s a really strong case for these people getting an extra leg up in the rental market. And for that being a NDIS support, because the benefits that will accrue for people having. More stable housing will be more stable and sustainable NDIS support costs over the medium to longer term.
And that makes sense too, because a rental subsidy means people can get all kinds of home share type arrangements, the kind of things we’re advocating for, rather than just being channelled into group homes unnecessarily as the default, which is what happens today. And we think a properly resourced commitment to innovation is also a really big important part of what government needs to do to make sure these kinds of options are available, evaluated, tested, scaled up across Australia.
Kat Clay: Sam, just quickly, I mean, what do these kinds of innovative home share arrangements look like on a day to day.
Sam Bennett: Well, the two main ones that we looked at We’re this host type model and this home share type model, and essentially the host arrangement is where somebody moves into the home of a host householder.
And that can be a family. It can be a couple. It can be an individual that is inviting the person to join them in their family home, share family life. together under their roof. The other one is home share. and that’s where people are in rented accommodation, or they have their own home and they’re getting some support from a housemate that’s living with them as part of that arrangement.
And these aren’t people getting a salary. They’re not paid by the hour. These are people that want to provide support, but need some kind of reimbursement for that, to cover, the costs and expenses that, that they have as a result of that arrangement.
Kat Clay: So, Hannah, I mean, you’ve said that there’s many people living in group homes.
I mean, if we choose to innovate and do new things with, disability housing and support, what happens to group homes and the people living in them?
Hannah Orban: So Kat, we want to see group homes phased out in a matter of years and for them to be replaced with share houses where people with disability who choose to live together and choose to share supports can do so in a way where they’re really in the driver’s seat and making the decisions on how the house is run and the house is run like a home and not like a service facility.
However, we also really want to see more options for people. To take up rather than just sharing supports in accommodation. So as Sam mentioned, host and home share, we want people to know what these options are and to be able to try out different things. Not only do we think sometimes they’re better, they can be cheaper as well.
Sam Bennett: Yeah. So, look, we, we recognize cat people are still going to want to live together in future. And some people will want to share support when they do. So other Australians All walks of life choose to live with other people at some point in time. So why wouldn’t people with disability do the same? But we need to make sure that when they’re sharing supports in those kinds of arrangements, they’ve got much more choice and autonomy over their home life than they do today.
We want to see an end to that. So institutional types of shared support that includes the larger group homes that are remnants of that deinstitutionalization process that Hannah was talking about. We agree that they should be phased out entirely and the timeline for that we think is pretty good.
Pretty fair that the one the Royal Commission identified for those no longer being part of the NDIS at all within 15 years. but more than that, we need to deal with that institutional culture when people share support, regardless of how big the home is. It needs not to be set up for provider convenience.
It needs to be people having choice. particularly over who they live with, but also who provides the support, how it’s provided, and people with, with disability, really need to be in the driving seat of all of those types of, of questions. And we talk about several things that will help to ensure that shift happens.
The separation of housing and support is really important. The Disability Royal Commission talked about that. If you have your housing and support provided by the same provider, that can cause you real issues. If you want to change who’s providing your support, you can be putting your home at risk. So that’s a real barrier to people having good choice over how their supports are working.
So, we think that needs to be phased out within a short timeframe. We also think that what we’re calling resident led governance arrangements are really important. So, this is ways that people can really have certainty that they’re in control of the way that decisions are made in the home about how support happens day to day and about important things like how vacancies are managed when they happen.
And we also think that service agreements, which the regulator in the NDIS currently recommends should be required, and they should be enforceable in terms of how that system is going to work. And we also talk about how we incentivize changes to happen so that providers are making these changes. the payments in this part of the NDIS should at least in part be linked to evidence that these kinds of changes are happening.
Kat Clay: Hannah, in the report you did say that people should have more flexible funding so they can try out alternatives to group homes, but would that just cost more money? Is there a risk that this funding will disappear?
Hannah Orban: Flexible funding doesn’t mean it’s unaccounted for when we say flexible. What we mean is that people who, when they get their package, they have flexibility over what they use it on.
You know, maybe they want to spend more on their home and living budget and less on Time with the occupational therapist or the speech pathologist at the moment in the NDIS, people have to decide upfront how many hours of each service they want, but, you know, things can change. And so, we want people to be able to have more flexibility in how they use their budget and trying out different home and living options in particular.
The good news is that these individualized living arrangements that we have researched and put forward in our report, will cost the same or less as group homes. So, it doesn’t have to cost more money. It’s really good news because it means that people have an alternative to sharing support. There is another way of creating housing and living support options in the NDIS where you don’t have to share supports and they can still be cost effective.
There are still reporting and audit requirements on NDIS spending, so we recommend that in most cases, registered providers should be the ones setting up individualized living arrangements, and as part of the registration process, those providers would have to go through an audit and show how money is being spent and account for it.
And we also want to see more safeguards, in fact. So, we are pushing in our report for there to be inspections of many of these settings. At the moment, the NDIS quality and safeguards commission, which is the regulator of the NDIS, doesn’t always know where people live. Who have housing and living support from the NDIS, and they often can’t enter the dwellings to conduct inspections or check on people’s wellbeing.
And really that’s not good enough. In most cases, we want the quality and safeguards commission to be able to enter these properties and check on people’s wellbeing to make sure that they’re okay. And that they’re happy in their housing.
Kat Clay: Thanks, Hannah. One final question for you, Sam. I mean, there’s been a lot of press recently about what the NDIS should or shouldn’t pay for, and the Department of Social Services has asked for feedback on a list of supports that are in and out.
So, Sam, what are your thoughts on what the NDIS should or shouldn’t pay for?
Sam Bennett: Yeah, it’s a really big question. There are some things here that are relevant to our report and the things that we’ve been talking about. And for the sake of public confidence in the NDIS, there’s a good reason to create a short list and short being the important part of that, I would suggest, to ensure that things that are at odds with public expectations about the appropriate use of public funds are ruled out.
So, we already have some rules on this in the scheme, but extending those to explicitly exclude things like alcohol, gambling, junk therapies, even, and anything that’s illegal, really, that that’s fair enough. I also think that looking at the other reforms that are in train, extending that list to include Foundational supports, which are the supports that need to exist outside the NDIS that the NDIS review recommended and that governments are busy in the process of negotiating right now to include those on the list as well.
That would make sense so that we avoid any duplication between systems in future. But the list goes a lot further. It tries to itemize everything that cannot ever relate to someone’s disability. And I think that’s a fool’s game really, when in most instances the answer should be, it depends. A list of outs and ins is not actually what’s going to make decisions.
The NDIS sustainable into the future. It’s the bigger changes that are in that recently passed legislation that mean that budgets in future will be set differently in a way that’s more consistent and predictable and easier to administer for the NDIA within the funding envelope that’s set by government.
And once you fix that issue, a scheme like the NDIS actually needs to optimize people’s flexibility rather than. Constrain it by and large because it’s people getting support in innovative ways, like those that we’ve been talking about on this podcast that need to be enabled by the scheme. These are the sorts of things governments might never have thought of to buy for people, which can be really efficient.
So, there are a few things on the list at the moment that really need to either come off or be clarified. Because one interpretation is that they would outlaw some of the kinds of reimbursement payments that we think would enable a housemate to provide voluntary support in an individualized living arrangement.
That always needed to be an option for people. Governments should be supporting and promoting that rather than outlawing it.
Kat Clay: Thank you so much, Sam and Hannah. If you’d like to read this report, it’s available for free on our website at grattan.edu.au. If you’d like to support this work and the work of our disability program, please donate at our website as well.
As always, please do take care and thanks so much for listening.