My Home, My Design: Making individualised living options real for people with disability

Innovation Unit ANZ partnered with disability services and support organisation Valued Lives, as the WA representative of the National Alliance of Capacity Building Organisations (NACBO), to develop a blueprint that would build capacity to address this challenge through Individualised Living Options (ILO).

“Outdated group homes still dominate the system. You can’t exercise enough choice or control over your own living situation.” 

NDIS Review Panel member, Dougie Herd

CHALLENGE

The United Nations Convention on the Rights of Persons with Disabilities, to which Australia is a signatory, sets out that people with disability have the right to choose the home they live in, where they live, and with whom, and also have a right to full inclusion and participation in the community.

However, the Disability Royal Commission reported in 2023 that in Australia there have been “failures” to uphold these rights: “failures to provide people with environments where they could thrive and maximise their potential. This included people having limited opportunities to develop personal relationships or friendships, actively participate in the community or build life skills.”

Moving into one’s own home for the first time should be an exciting, if nerve-wracking, life event. However, if you are a person with a disability, you often end up with limited choice and little control over the place that becomes your home. A group home, providing supported living for four to six people under one roof, has been the default option. In contrast, Individualised Living Options (ILOs) are living arrangements based on principles of choice and control over one’s life. The NDIS has recognised this approach as beneficial (around 450 ILO arrangements existed in WA prior to the roll out of NDIS) and have subsequently developed and launched guidelines for ILOs in Australia.

In Australia, about 17,000 people live in group homes. Around 30% of those have mild intellectual disabilities

There is a need to strengthen the formal and informal supports for people with disabilities as they transition to living in their own home, as highlighted by the 2015 report commissioned by Australian Housing and Urban Research Institute. The report stated that building capacity for this process was key to increasing housing opportunities for people with disabilities.

National Alliance of Capacity Building Organisations (NACBO) responded to this by setting out to design a blueprint for collaborative capacity building so that people with disabilities can pursue Individualised Living Options (ILO).

APPROACH

NACBO’s initiative focuses on growing the knowledge, understanding and confidence of people with disabilities, their families and loved ones. This starts with developing an idea of what a good life and a ‘home’ means for them and what it might look like. Then the next stage is to navigate the pathway to finding that kind of home through ILO.

Vital to this process are ILO Navigators, passionate and well-informed people who work alongside a person with disability and their family to consider what home they might imagine for themselves. They work together to build the person and their family’s capability to explore and navigate pathways towards their preferred home. Many ILO Navigators bring their own lived experience of disability or of supporting a family member with a disability.

Drawing on desktop research, we developed semi-fictional personas for a person with disability, a family member and an ILO Navigator in this blueprint and mapped out their potential journeys. This was a challenging process given how unique and variable each person’s journey could be. While the Service Journey cannot represent every family’s experience, it is designed to highlight some of the common processes and moments that a person with disability and their family might encounter as they consider Individualised Living Options. This begins with “The Change”, the gradual shift or more focussed event that prompts a person to seek a new, more independent living situation.

IMPACT

In designing the Service Journey Blueprint, we wanted to ensure we captured the value system that underpins NACBO’s work. They bring a deep and rich philosophy to their work, grounded in their commitment to human rights and social role valorisation. 

Lived experiences are essential to shaping and delivering the service. The development of the Service Journey was informed by a Community of Practice of ‘ILO Navigators’ from each of NACBO’s partner organisations across Australia, including Valued Lives. Peers who have been through an ILO journey are invaluable in the process – the Service Journey includes families being introduced to others who have already experienced this transition by the ILO Navigator. In addition, stories of peers are readily accessible on the ILO Toolkit and My Home My Way  websites alongside other practical resources such as hint sheets and checklists and links to relevant organisations. 

ILO can be confusing and it may not be possible to access an ILO navigator. By developing a visual ‘blueprint’ to reflect what a journey might look like, NACBO is adding to a collection of resources available for people wanting to pursue this option. This process also codifies their work over recent years in this space and captures many learnings that may benefit people seeking Individual Living Options in the future, their families and also potential ILO navigators.

Our goal was for the blueprint itself and other readily usable resources to be accessible for people and families on the ILO Toolkit website. The personas and key moments on their journey were first developed in-house in draft form using Miro, before handing over to graphic designer Zenaida Beatson from For Purpose Design. Illustrations were by Nathan Blakeley (Rabbit Tree Design).