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Managing Individualised Living Options (ILOs) isn’t easy. It involves a lot of tenacity, patience, and skill from both providers and participants. But I reckon that when it’s done well, it’s so bloody excellent for wellbeing, human rights, and insurance that I want the entire NDIS market to do it too! Here are some ideas to get your creative juices flowing.
How I see the overall ILO process
I see three functions that intertwine.
The first function is part coaching, part counselling, part planning. It’s deep thinking alongside the participant and their supporters, in detail about what the future could look like. It’s identifying developmental milestones, thinking about life goals, and dreaming about possibilities. It’s bringing in practical project management tools to spark conversation – “What would you need to move out tomorrow?” – and discussing both the restrictions on and possibilities of funding from NDIS and other sources. It’s identifying and balancing expectations, not just the participant’s but those of all stakeholders: parents, informal support, allied health practitioners, and other paid supporters.
The second part of making ILO work is project management and putting it together. That involves finding properties, housemates, and hosts, along with filling in forms, budgeting, funding great supporters, and local networks. Do you remember the last time you moved house? It’s stressful no matter what kind of support needs you have. But like all great coaching processes, once you get clear on what you want, why you want it, how you’re going to get it – and often, why you deserve it – putting it in place is the easy part!
The third part is making things work over the long term. I’ve got an idea that like any other shared housing arrangement, if an ILO works is for 18 months, that’s an excellent outcome. If it’s fewer than six months, I think we can do better at defining what the participant wants and why, so we can aim more precisely the next time. Was it not quite the right housemate? Not quite the right set of agreements? Was someone not feeling valued? We need to go back to the coaching and defining stage to see what needs further clarification.
I’ll spend the second half of this blog doing a deep dive into this third part, which the agency calls “monitoring and redesign”. It can be a bit of a slippery fish – hard to see clearly, hard to grab hold of, and hard to replicate.
Monitoring and redesign
We barely think about monitoring and redesign in our own lives. How do you protect your most valuable relationships? Do you regularly discuss your expectations with your housemate or partner? Put them into a written contract? Do you do regular couples therapy before you need it? Do you put toothpaste on the shopping list before you absolutely need it? (This is where my partner starts saying, “Three months’ worth left in that tube, for sure!”).
Probably not, right? Proactively protecting relationships often means using a new muscle, regardless of whether you’re an NDIS participant.
From my perspective, the monitoring and redesign function of ILO is incredibly important. It involves sophisticated project and people management skills, an awareness of disability, and a sky-high EQ. It involves a person being available to solve emotional and practical problems, unpack assumptions embedded in practice, and mediate between multiple stakeholders who often have competing priorities.
The biggest challenge is change management. Often, we’re working with people who are moving from home for the first time or are seeking more independence from parents and carers. For parents and carers, providing support is like breathing – it quickly becomes a habit, even an instinct. My team’s job is to help these people understand what they’re providing so that we can help them plan for how that support will be provided when they’re not there anymore – either next week when the participant moves out, or a decade from now, as they age.
My team places people we call lifestyle coordinators into ILO arrangements. Some of them just do rostering and are the people who get the text saying a support worker can’t come to a shift at the last minute, instead of that text going to mum or dad. Some of them also step in and provide direct support. Some arrange home repairs, replace housemates, recruit paid support workers, attend medical appointments, and help find paid work or leisure activities. Some have a regular weekly meal with a participant, a housemate, or a parent to make sure everything’s on track.
The lifestyle coordinator is a highly flexible role, and its breadth and depth depend on what participants and families want and can afford in their plans.
Because things can change so quickly, we regularly have our ILO coaches zoom out with everyone. Before things get to the point where they could crash and burn, we re-examine what’s important, what’s urgent, what’s expected, what’s working, and what’s not working.
We’re not aiming for perfect. Is your home perfect? Does your partner or housemate always do the washing up at the right time? Do you never feel like you’re carrying more than your fair share of their physical or emotional care? Cool. Neither do our participants ;) “Perfect” just isn’t a thing. We’re aiming for sustainable, safe, risk tolerant, fun, rich, joyful, cosy, and kind – just like any other home.
Like ILO arrangements themselves, monitoring and redesign is a highly individualised process. Success means building resilience into the whole arrangement so that crises are few and far between and building capacity in individuals to make it work well into the future as people come and go.