The unfinished business of de-institutionalisation

Rob Donnelly

There are few aspects of life that carry a richer significance for many of us than our sense of home. The right to a home goes beyond simply having a roof over our head.
It’s shaped by core choices about where we want to be, who we want to be with, and how we want to live. In the best cases, home is where we can be at ease, be ourselves, and feel safe.

Hannah, you recently co-authored the report. “Better, safer, more sustainable. How to reform NDIS housing and support.” It’s concerned with the current reality of Australians with disability who are living in group homes. What can you tell us about the quality of life, particularly that sense of home life, that is currently being experienced by many of those people currently living in group homes in Australia?

Hannah Orban 

The Disability Royal Commission heard from people with disability in Australia, and their families, that group homes can really inhibit people’s quality of life through limiting choice and control over where people live, who they live with, and who provides their support and even about the rhythms of their day – such as when and what they eat, when they go to bed or wake up.

Evidence from the Disability Royal Commission indicates that institutional practices persist in many group homes. And this is really the unfinished business of de-institutionalization, which started in the 1960s as Australia moved away from really large, segregated institutions. 

However, changing the number of people who live in one place isn’t enough. What it’s like to live in a home really matters. The NDIS Quality and Safeguard Commission’s Own Motion Inquiry into aspects of supported accommodation found high incidences of violence, abuse, and neglect in a sample of supportive accommodation settings.

If people aren’t feeling safe in their home, they aren’t experiencing a good quality of life. So, our report lays out how government can make housing and living supports better, safer, and more sustainable for people who have intensive housing and living support needs, including people who are currently living in group homes.

Rob Donnelly 

The focus of the current Federal Government, particularly the NDIS Minister Bill Shorten, is concerned with making the NDIS financially sustainable. The language is very much “We value the NDIS. We want it to continue, but we need to be financially responsible so that it can be sustainable.”

I’m interested in unpacking the presumptions that might exist at the Federal Government level, and maybe even within the NDIA, as to how financial sustainability in disability accommodation is best achieved.

Do you have any thoughts about the driving financial presumptions that have the government insisting on maintaining this long-standing group home model of accommodation, particularly given that so much came out in the Royal Commission, around violence in those settings. Why do we see this this model persisting?

Hannah Orban 

Great question. Thinking about the financial aspects. Group homes can be cheaper than alternative models, such as living alone, and undoubtedly this is an important reason why they’ve been a popular option for governments and providers since the start of the de-institutionalisation process. When three people split the cost of a support worker under one roof it is much cheaper than living alone and paying for one support work each.  And the difference is billions of dollars, across the approximately 44,000 people who need housing and living support.

The problem with group homes isn’t the economy of scale they offer in sharing supports. The problems with group homes are their institutional culture, which means people with disability don’t always get to decide how their home and how their lives are run, and the high rates of violence and abuse in these settings. And this is what the Royal Commission, and all of us, want to see eliminated from disability services. 

The other problem is that people haven’t always had an alternative option to group homes. Our report is really about creating more options for people in housing and living supports. We recommend alternative living arrangements that can cost the same or less than group homes and people don’t have to share supports if they don’t want to.

Many of us in Australia though, choose to live with other people, not only because it’s enjoyable to live with others, but it is also cheaper. We split the rent, utilities, food with flat mates so we spend less overall. And we get the joy of companionship from our flatmates. So, if people with disability want to live together and share supports, then that economy of scale is a good feature of those arrangements.

But again, it’s that institutional culture, it’s the rates of violence and abuse that are the problems with group home settings. So, our report recommends several ways for the government to enable people to share supports without that institutional culture that really characterises group homes.

Rob Donnelly  

One of the issues that is woven into the group home culture is often the connection of support services with accommodation, where one disability organization in a sense has control over the whole lot. What can you tell us about the problematic side of one organisation have that overall control over home and supports? What problems does it generate?

Hannah Orban 

When the housing provider and this living support provider is the same organization, it really limits people’s choice and control in their housing and living supports. Because if they don’t like the house, but they like their support workers, they would have to lose both to leave. And if they like their home, but they don’t like their support workers, then they would have to leave their home to find support workers they like and trust. 

So, it locks people into a system. The Independent Review of the NDIS recommends separating housing and living support providers, and we agree with that. We think that they should be separate, and people should be able to choose where they want to live and separately choose their support workers because it gives people more options essentially. That’s going to give them more choice and control. It will make them more independent, and it’ll probably be, you know be a more efficient allocation of people, homes and support workers.

Rob Donnelly 

Taking up your mentioning choice and control. Of course, focus on choice and control was a foundational focus of the community movement towards establishing the NDIS, especially the Every Australian Counts movement. The drive was about setting up a system where individuals have agency over their lives and can make that choice in control.

If we were to think about an individual with disability, and maybe they are in a moment of crisis in their life, it might be that they’ve been living with elderly parents and the parents have died. There’s a crisis, and the person needs accommodation and a significant amount of daily support to live independently. What experience of choice and control does that person currently have when it comes to approaching the NDIS for funding and support and a resolution of accommodation needs?

Hannah Orban 

Often the only option for people with disability who need housing and intensive living support is a group home. And if you’re experiencing a family or a personal crisis, you know it can be even harder to search for options that might be available, take the time to figure out what you want, what your goals are. So, it can be a really dire situation and often times a group home is the only option.

But without options, you don’t really have genuine choice. And you know, while we hear from different groups that not all group homes are the same, as I was saying before, the Royal Commission heard that in many group homes, people are effectively living in mini-institutions where they have little control over where they live and who’s providing their support. And sometimes that support is personal care, where people with disability are getting help to get dressed, shower, and use the bathroom. So trusting that support worker really matters. And, worst still, we have these high rates of violence and abuse and unlawful contact in these settings, as evidenced by the NDIS Quality and Safeguards Commission.

People with disability want to feel safe at home, just like everyone else. And for the price tag of hundreds of thousands of dollars per year, that it costs to live in a group home, people with disability expect, quite rightly, quality and efficient services and genuine choice and truly independent living. 

But, right now, there just aren’t enough options for people, and they’re not getting independent advice to know what they can do with their funding. So, part of the goal for us, in writing this report, was opening up options for people and putting some infrastructure in place so that they would be able to get the advice that they need to really plan a good housing and living situation that suits them.

Rob Donnelly 

Taking up on that sense of options beyond the group house model. I’ve become aware of how different Western Australia is to the rest of Australia on the choice of accommodation front. I’m really intrigued if you can shed light on how they have ended up being in a place where there are a range of alternate accommodation models and a general atmosphere of innovation. How did they arrive at that place in comparison to the rest of Australia?

Hannah Orban 

We spent quite a lot of time in Western Australia, and talking to providers in WA, because they have really has been at the forefront of disability services in Australia for decades. They pioneered individualised funding well before the NDIS, and they’ve also been the pioneers of what we call individualized living arrangements. There’s a much better take up of individualized living options in Western Australia, for example. 

We see that in WA there is just more innovation across the sector and it seems to be that they know how to make those approaches work. They understand what it takes to set someone up in an alternative situation where they’re getting, you know, assistance from a host or a flatmate or a neighbour. And so, they’ve just gotten really good at it and they know how to resource it.

There are a few differences in terms of their industrial relations laws that have allowed them to do some of that, but through our research we found that there isn’t any necessary change to legislation to make individualized living arrangements work across the rest of the country. So, we can actually do this in Australia. We just need to spread that innovation. And that’s part of what the report is about.

Beyond WA, though, these approaches are also present in the UK and quite a bit in British Columbia in Canada. It is happening in different parts of the world. So, the rest of Australia sort of needs to catch up.

Rob Donnelly 

I recently had a conversation with someone from Developmental Disability WA. She suggested there was quite a bit of political momentum going back decades in WA that also contributed to that culture and there was some solid policy foundations that helped create that atmosphere. So that difference between WA and the rest of Australia is quite fascinating.

All right, so choice implies having a range of options to consider beyond a group house situation. Options that are based on the individual’s needs, goals, expectations, and lifestyle requirements. The report mentions pockets of innovation, as we’ve just been talking about in relation to WA. Maybe we can dig down a little bit more into these alternate models to group home settings, that you’ve come across, particularly over in the West.

Hannah Orban 

A big focus of our research and recommendations is to create more options for people in housing and living support. So we looked at innovation in Australia, particularly WA as we were just discussing, where these alternative approaches have really taken off. And we also looked at the UK and British Columbia, Canada. And in British Columbia home share arrangements, which are a kind of alternative to group homes, are the main type of residential support for people with intellectual and developmental disability, overtaking group homes now.

We recommend a new approach to living support that we’re calling individualized living arrangements where people live in the community. For example, with a host or a flatmate. And instead of relying only on formal paid-by-the-hour support workers, people with disability draw on a mix of supports from support workers, family and friends which is also known as informal support. And then what we call semi-formal support, which is, for example when a host or a flatmate provides you with support such as cooking, cleaning, taking care of the garden. And they receive a subsidy for the costs associated with that support and normally that semi-formal support is integrated into the household life and the life of the person providing the support.

So, it’s not paid by the hour, and it isn’t someone earning a salary, but for example in a host arrangement, a person with a disability lives full time with a host who isn’t related to them in the home of the host. Or there’s the housemate model, which we focus on as well, where the person with disability lives in their own home or in a shared rental property, for example with another person, or with people who aren’t related to them, who are providing support.

And these forms of semi-formal support can’t entirely substitute formal supports all the time, but when they are part of a person’s package, they do reduce that dependence on paid staff. So they’re more cost effective and they have benefits in being more community oriented and more inclusive essentially. These arrangements have worked really well in the UK, in Canada, and in WA, and you know it’s good news because it means that people can have a cost-effective way of setting up their housing and living supports without needing to share supports all the time.

We also recommend, in our report, a housing payment that people with disability can use in the private rental market if they need intensive support and they aren’t eligible for the current specialist disability accommodation categories or if they want to move away from their group home. And that’s great because it means people don’t have to live in specialist accommodation or in specific locations. They have more options and hopefully they can find a better fit in the private rental market where there’s just a greater variety of options available to them.

So, by creating more options for people beyond group homes, and using a more flexible approach of supports, mixing formal, semi-formal and informal, we argue that people will have greater choice about where they live and who they live with and who provides their support and that people with disability are more likely to find a better fit for their particular situation.

Rob Donnelly  

Another thing that’s intrigued me is the accommodation model of a host family. I haven’t come across that and, jumping on google, I can see that it seems to be quite prominent in WA. It seems quite different from a pathway towards independent living in terms of someone, presumably, moving from their family home to another family home. What did you hear, when you were interviewing people, about the value that was experienced through this model?

Hannah Orban  

I think, first of all, we often call it a host family, but it doesn’t have to be a family. Essentially you are living with someone who, in their home, so that could be more like a friend or just a flatmate in fact. So that’s kind of the distinction for a host.

But we’ve seen in the UK and WA and British Columbia that people enjoy the fact that this is a more community setting where they’re part of someone’s life and they’re part of a household. And they prefer that to a group home model where it feels a little bit more like an institution. 

And I think ultimately it comes down to building relationships and sharing lives together. You know, introducing each other to one another’s friends and having events at home and being part of dinner time and things like that. It comes down to relationships and being part of a community. And I think that’s a lot of the value that people draw from a host family arrangement.

It’s definitely not for everyone, though, and that’s why we wanted to put out more options for people because we don’t want to force anyone to take up a host arrangement if it doesn’t suit them. Something like a flatmate or a good neighbour model or even a share house might be better for a lot of people. So having options is really important.

Rob Donnelly   

Do you have any data around the long-term sustainability of these alternate living models, particularly where they have that semi-formal support? Do they prove to be a long-term proposition or is there a bit of short-term-ness in those models?

Hannah Orban   

From a financial sustainability perspective, our research shows that individualized living arrangements can cost the same or less than a group home. So that’s really great news. There is a long-term financial sustainability to these models and it means that people can live independently, and cost effectively, without needing to share supports all the time.

We agree with the Royal Commission that larger group homes need to be phased out and we really want to see not group homes but share houses where people with disability can live together and share supports if they want to, and they can do that with greater choice and control, and with resident led governance of that household.

Share houses are also financially sustainable because people are sharing supports. And we really would want to see that share houses also draw on semi-formal support from flatmates or neighbours, where possible, and that would make them even more financially sustainable in the long run. 

As far as the sustainability of the arrangement in terms of the relationships in that arrangement, there isn’t any data currently that shows how long people stay in individualised living arrangements. But we have heard from providers in WA that their alternative arrangements can be very durable, lasting years, even decades.

Obviously, all these things are subject to time and chance. People change flatmates regularly. We all do that, from time to time, so we should expect some of that change. But we have seen from providers in WA that they can be very long-lasting arrangements.

Rob Donnelly   

The report not only looks at alternate models of accommodation, but also tackles the pressing issue of reforming and improving current group home environments. I know you have quite a lot around this in the report, so you can’t cover it all. But can you tell us some key points around these reform ideas about how group homes can be improved, particularly, I guess in relation to the vulnerabilities related to violence and those issues of safety.

Hannah Orban 

So even as people take up individualized living arrangements, alternatives to group homes, there will be some people who want to live together and share support. And lots of Australians choose to live with others – there’s nothing wrong with that. It is a cost-effective model, insofar as people are splitting the costs of support workers. So that means there is a long-term sustainability feature of sharing supports. That’s a good feature.

Group homes have become characterised by their institutional features. We recommend moving away from group homes, because of that, and instead establishing what we call share houses. We agree with the Royal Commission that larger group homes should be phased out, but smaller share houses should be an option for people who want to take them up. The most important difference between a group home and a share house is the level of choice and agency that people have over their day-to-day lives.

So to be brief, because we do go into this in quite a lot of detail in the report, our report lays out a series of recommendations to ensure the transition from group homes to share houses. Such as support for resident-led decision making, training and high-quality care such as active support for support workers, enforceable service agreements, and separating housing and living support providers in most cases.

The rental payment we propose will also allow people who want to establish a share house to do so in the private rental market, if that’s the best option for them, which means they don’t have to rely on special disability accommodation if they don’t need it.

As a safeguarding measure, we also recommend that the Quality and Safeguards Commission should be able to inspect properties, where there’s shared supports, so that they can check-in on people’s well-being and talk to them and make sure they’re hearing from them that they’re happy with the arrangement.

Rob Donnelly 

The NDIS is a notoriously difficult system to engage with. It’s the antithesis of the accessible, easy to navigate system that would be expected in this space. There are promises that it will improve. We’ll wait and see. Can you tell us about the idea of navigators that’s raised in the report, and what would a navigator do that’s currently not covered in the NDIS system and the way engagement works with the system?

Hannah Orban 

The idea of housing and living support navigators is for them to be a source of information and advice about options. People with disability don’t always know what they can do with their funding or which services are out there that might be a better fit for them. And there are also just low expectations of people and what their goals and living arrangements could be, as well, which means they don’t get access to the information that they need.

We propose that people, who might choose either new alternatives or to live in improved share houses, will get more support to understand their options and to develop a plan and coordinate their services. We think this needs a specialised approach and it shouldn’t just be left to the market, as with support coordination today. So, government really should commission a service that ensures people get the help they need in a timely way.

So once you’ve received your NDIS plan budget, the navigator’s job is to help you plan your supports based on what you need and within your funding envelope. And really that planning process is missing in the NDIS right now. Budget setting is not the same as planning. So by planning, we mean setting goals, building an understanding of what’s possible, working with the local market and what’s available in it, and helping to connect people with formal and semi-formal supports, and to maintain their social networks as well. So to do that, people need a source of independent advice, and that’s what we see their housing and living support navigator as doing.