At Home With the NDIS: Individual Living Options (ILO)

It is probably a fair assessment to say that the first seven years of the NDIS have been underwhelming in terms of implementing many of the Scheme’s original aspirations. One domain that hasn’t met expectations is the area of home. For example, the NDIS doesn’t yet have an overarching strategy that recognises and expresses the importance and role of home in the way that most people think about home. Instead, the focus has been on housing, accommodation and paid support services. In practical terms, this means that the dominant discussions, approaches and issues from pre-existing State and Territory systems have migrated into the NDIS without much change to the narrative.

Other factors such as the scale, timeframes and priorities associated with transition, various political decisions, the emergence of SIL as the dominant accommodation service model for people with intellectual and cognitive impairment and other Scheme issues have also contributed to this situation. SIL could well be described as an approach that builds on existing beliefs and assumptions that “people with disability are better off with ‘their own’” and demonstrates “limited imagination, [anticipating] that all support has to come from paid workers” (Ordinary Life Report, IAC, p16). Additionally, it is largely a State and Territory responsibility to ensure there is an adequate supply of suitable housing.

We know that the NDIA has been developing an Individualised Living Options (ILO) approach in which living arrangements are designed and built around each individual to reflect their decisions, choices and preferences. By definition, ILOs incorporate some informal support that assists the person to live independently and is not 24/7 paid supports. Examples can include a housemate or drop-in supporter who isn’t in a paid relationship. So, ILOs will take many forms and are expected to offer participants a genuine alternative to congregate models of living. They will also reduce the Scheme’s dependence on SIL and provide a pathway for participants who want to exit SIL arrangements.

There is also no doubt that reforming SIL is firmly in focus. The Agency has been sending significant messages and signals about both ILO and SIL for some time now. The new Price Guide and the recommendations of the Tune Review and the JSC Inquiry into SIL will likely add momentum to what’s happening in these areas.

In this context, it intrigues me that the word ‘home’ is strangely absent from much of the NDIS related discussion about where and how people with disability live. Its absence stands in stark contrast to the pervasive importance and influence that home has on many domains of life for most people, something that seems to be true no matter what our definition or experience of home is. Given how much time I have spent in my home over the last three months, I’ve been wondering where this more complete concept of home might be found in the NDIS.

THE ACT

What does the Act say? Zilch! Apart from references to home care, the word ‘home’ is not there. Although it seems reasonable to infer that normative notions of home are implied in the Objects which state that the purpose of the NDIS is to:

give effect to Australia’s obligations to the United Nations Convention on the Rights of Persons with Disabilities (CRPD);
enable people with disabilities to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports,; and
promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community. (Sect 3, Part 2 (3)1).

THE CRPD

As it turns out, the CRPD also doesn’t use the word ‘home’ to describe what living arrangements could or should be for people with disability either. The closest it gets is in Article 19, which is all about living independently and being included in the community. It says that “States parties to the present Convention recognise the equal right of all persons with disabilities to live in the community, with choices equal to others …” and specifically identifies their rights as:

to choose their place of residence;
to choose where they live;
to decide with whom they live; and
to NOT be obliged to live in any particular living arrangement.

Unsurprisingly, most of us assume we have these rights when we talk about ‘home’ and the Minister also recently reiterated their centrality for people with disability. Article 19 goes on to assert the right of people with disability to have access to the residential and community supports they need to enable them to live in, have access to, and be included in their communities.

IAC ADVICE

The IAC is a legislated group of people with lived experience of disability who provide strategic advice to the NDIA’s Board about the design and experience of the NDIS from the perspective of people with disability. One of its earliest and most important contributions was a 2014 Report entitled ‘Reasonable and Necessary Support across the Lifespan: An Ordinary Life for People with Disability’. This is an important foundational document that the IAC hoped would be referred to regularly, used by the NDIA in the ongoing development of the Scheme, and be a document that participants, providers and others would use in a variety of ways. It is relevant to this discussion because home – in its broadest meaning – gets mentioned numerous times.

Home is a consistent theme throughout the Report’s comprehensive appendix that summarises what reasonable and necessary supports should look like at different life stages if supports are facilitating people being able to live ordinary lives. For example, there is a goal that children under five will “live in well- supported families that can create home environments that provide rich learning opportunities”. While for 16-25 year olds, the goals include: “To plan and establish ones’ own home in a culturally appropriate way” and to “actively choose a model of housing and support, who you live with and where you live”.

These goals, and others that relate to home and living arrangements, are blissfully ordinary aspirations. As promised by the Report, they reflect important elements of what most people aspire to when they think about their home environment. In all of this discussion, the IAC clearly conceptualises home as something more than housing or accommodation. They have a much richer concept in mind. And they are not prescriptive, which is a good thing because the specific details of what home means varies a great deal from person to person. For each of us, past and present experiences of home create an important base which significantly influences the outcomes we achieve and the quality and nature of experiences we have in many other dimensions of life. In one of my favourite 5-minute Youtube videos, disability rights advocate Tom Nerney provides a simple and clear explanation of this.

ORDINARY ASPIRATIONS OF HOME

For most of us, the nature or aspiration of home gets expressed when we say things like: “Home is where I can feel safe, free and able to be completely myself”. Or “I can be me, freely and without judgment”. Or more bluntly, “home is where I don't have to wear pants”. We each nuance our aspirations of home based on our cultural and personal backgrounds and experiences. For many Aboriginal Australians, home includes assumptions about kinship connections, culture, land, law and ceremony. To a ten year old in British Columbia, home is having a secure, cheerful place where you are respected and loved. It is an enjoyable, happy place where your hopes and dreams are born while a seasoned millennial traveller describes home as a feeling of relief and a breath of fresh air. “It is the weightlessness that comes with being in a place that makes your soul feel like it is sitting by a fire, smiling and cozying up with a warm cup of tea. It is a place that just feels right”.

Our ability to feel safe, secure and comfortable is also influenced by the people we love and surround ourselves with. For some people, this means being less attached to a place and more connected to being with a certain person or people.

But for many of us, expectations like being able to choose who we live with, have a say in where we live and choose to move elsewhere if we want to, are so deeply ingrained that we don’t even realise that these are rights we are free to exercise.

WHAT LIES AHEAD?

It will be exciting if the next stage includes the Agency producing an overarching strategy that more holistically engages with ordinary notions of home and how these interact with and influence other aspects of life. That will hopefully give all participants better opportunities to shape the design of their supports and services, including making decisions about where they live and who they live with, whether in an ILO or a SIL arrangement. The IAC’s Ordinary Life Report provides lots of guidance and direction for developing a strategy that aligns with the CRPD, so I remain hopeful.

Clearly, there are more changes ahead. Opportunities to design an ILO will be revolutionary, liberating and empowering for many participants, especially those whose intellectual disability or cognitive impairment means they may have been denied the right to make decisions about where they live or who they live with until now. This is a key expression of a significant aspiration that gave rise to the NDIS a decade ago. It is also something that has become an embedded feature of the Western Australian disability support landscape over the past two decades or more. You can read more about that on the WA Individualised Services (WAiS) website.

The reality for providers who are thinking about offering ILO is that many are likely to face significant challenges. Those whose services are geared to congregate models of support and/or use approaches in which people other than participants make many decisions about their lives and supports will need to make significant changes to service models and to their organisation’s culture. As we know, culture is shown in ‘how we do things around here’, with observable behaviours and actions reflecting shared beliefs and assumptions which are usually out of view. Some of these will be about participants’ communication and decision-making capacity. They will need to be unearthed, examined and changed, a process that will take time, resources, focused determination and perseverance over the long haul.

It is a journey worth embarking on though, because these are incredibly important things to address (being human rights), and because the NDIA’s signals suggest that individualising services like this will be a big part of the future. While getting started on the journey can seem to be the hardest part, beginning by choosing one individual and being to work out what it will take to truly support them to decide how and where they want to live, and who they want to live with.’

WHAT CAN PROVIDERS DO NOW TO PREPARE FOR ILO?

Firstly, dust off the IAC’s Ordinary Life Report and have another read. It really is a fabulous document that we could all put to better use.

Secondly, use the IAC Report and the Tom Nerney video to reflect broadly on what home and living means for anybody. Then think about how that can influence how your organisation designs and provides accommodation and support services to the people you support.

Thirdly, and somewhat ideally, you might engage in a culture audit to determine the extent to which your services, culture and systems are set up to support individualised services. However, we know that most providers are currently time and/or resource poor, so here is a simple shortcut activity you can do instead: assess how your approach to service agreements measures up against the guidance on page 14 of the NDIS practice standards and quality indicators. That page pretty much describes an individualised approach to service agreements. If you’re a long way from what’s described, you likely have a fair bit of culture change work ahead of you before you’re well positioned to design and deliver ILOs.

Fourthly, brush up on your knowledge of what ILO’s are and how they work. Check out the WAiS website or stories available on the Community Resource Unit (CRU) website.

And finally, work with just one of the people you support to listen to their broader sense of what home could mean for them. Map out what it will take to make that a reality for them. As you do that, some of the systemic implications for your organisation will come more sharply into view.