Creating your version of home 

A young man with Down syndrome gardening.

In this topic library, we have previously explored why home is such an important foundation, but also something that people with disability have typically found is not afforded to them. Many people still find themselves offered group and other shared supported accommodation arrangements.

It can take many things to make your own home a reality, or journey with someone else to assist them to create their own home. It requires vision and commitment to what typically and fundamentally makes home. It can be a challenge, an often treasured opportunity, the chance to grow, the opportunity for relationship and autonomy and a building block for a great life, as well as an act of revolution. All things worth aiming for.

In this article, we share some of the key ingredients that make all the difference in creating your own chosen place and home. It is based on experience in working with people with disability and families. There is no one ‘recipe’ for creating a home as it’s unique to each person, but there are some important common elements. Sometimes, within the NDIS, this is talked about using terms like ‘explore’ and ‘design’.

Home: What’s your vision?

Not so long ago, large institutions were seen as the only possible place for people to live. This was then replaced with group homes or other grouped arrangements. This can make it feel very hard to create something different. You may regularly hear messages that different ways of living are not possible. This is why it is such an important step to develop your vision for home.

Home is a fundamental human need. It is important to know that the severity of a person’s disability or diagnosis does not need to determine whether they can live and enjoy a home of their own with the support they need. You can read this research by Curtin University to understand more.

With a clear vision for home and the right support, even people with very complex support needs have been able to move out of group homes, take a natural course to move out of the family home, or remain in their own home. These individuals and their families and supporters show us that it is possible.

Your vision should be based on what other Australians mean by home. It also means connecting with other people who believe in your vision too, and want to help make it happen.

This means the first step is to imagine what is most important and life giving to you.

Lincoln and Janice’s story

Below, Janice and her son Lincoln share one such journey. You can find Lincoln’s story — and many others’ on the My Home My Way website.

“For my peace of mind and Lincoln’s future, it was important that he be settled into his own home with minimal reliance on parental support, while I still had energy to make it happen alongside him. An exploration session helped Lincoln create a clear vision of what he wanted in a home. Our shared vision – that Lincoln would live in his own home with a housemate, not in a group home run by a disability service – kept us on track.

He was keen and telling everyone he was moving out – I had to get started!

So many things to think about – bricks and mortar, supports, safety and safeguards. But the only way forward was to start with one thing and build knowledge through research, asking, looking, learning.

That took 18 months and Lincoln has been in his own home now since September 2022, living his best life! We still have work to do but already I feel relieved of worrying about the future, while Lincoln continues to learn and thrive. My advice – start now! Lincoln says, “I love living in my new flat, and being independent!”

Exploring stories and experiences of others is a great way to fuel a sense of possibility and get started. Written or online resources, videos and podcasts, peer groups, forums and workshops and online communities can be good sources of support. You can find a wealth of stories on other websites like Talks That Matter and My Home, My Way.

The NDIS home and living space can be complex. The support of an organisation specifically working in this area may be important in relation to thinking and planning, but also thinking about what is needed with the NDIS. However when doing so, it’s important that you maintain your vision and don’t feel put off.

Think about what else is going on in your life

Creating a home is an important foundation for a great life, but not the only one. Everyone needs to also have lots of great reasons to make home the centrepiece of a full life. What else would make your life rich? What great reasons do you or could you have for leaving home each day? Whether it is work, learning, volunteering or hobbies, your home can be just one source of purpose and fulfilment.

We know some people have trouble leaving home, but that doesn’t mean that their home can’t be that same source of fulfilment. Answering questions like whether you want to live by yourself or with others, or where you want to live can also help you think about your life more broadly. The key is to think about why your answer is important. This will reveal more about why each part of your vision matters.

It also provides cues to things you need to help you thrive. For example, if you think one of the most exciting things about moving out is being able to have friends over, is there enough happening to help you connect with other people? If it’s decorating, do you have other places and ways to express your creativity? The next question you can then ask is ‘how can we make more of this happen?’

Thinking about the house

Access to accessible and affordable housing is a major barrier to people with disability in Australia. Any location, access and financial constraints will flow into this part of the decision. In navigating these barriers, there are some things that might help.

Firstly, having developed your vision will help you keep a focus on what is most important to you and whether there are things you can compromise on.

It is important to look closely at finances and think about what you can afford. What are the gaps? You can also ask ‘How could we increase affordability?’ For example, would I be willing to share with a housemate without a disability to contribute to costs and offer support? What schemes or government assistance might help? Is it possible for me to earn more?

Doing it in steps

It is important to understand where you are on the journey. Creating a timeline for when you want to reach key steps can be very helpful. You can also create discussions with others where you review and talk about what the next steps might be.

Moving to a new home might be best done in stages. If there are longer term barriers to overcome, this can help you to get started.

If you have never been away from your family for more than a night or two, could you arrange a short stay somewhere? If you have never spent time alone, could you try this for short periods, with the right safeguards in place?

Lincoln stayed at an Airbnb in his local community. This enabled a trial which revealed the daily supports he might need to live in his own home. Some people have stayed part of the week in their new home, even starting with one night to become used to the change.

It may be that you could talk to your support coordinator or LAC about whether your NDIS Plan can help. For example, here is some information about short term accommodation and the NDIS. It also says that you can use your Core budget flexibly.

Even if you or you or your family have the capacity to buy a home, it may be useful to rent first to better understand what you are looking for in a home.

Think about the supports you need

Living in your own home doesn’t necessarily mean living independently. It can involve a range of supports that are used creatively. Nor does it mean that you need to have ‘all the skills’ before you move. We know people learn to live in their own home by actually doing it.

We all draw on a range of supports to live in our own home. Think about how you could draw upon natural relationships to provide various parts of the assistance needed. This could be friends, neighbours, family, sharing your home with someone or moving into someone else’s home. These relationships are an important and a rich part of your life, and can also provide an important safeguard.

You might want to have support from different people but not know who those people are yet. Just because you don’t know them doesn’t mean you and your supporters couldn’t work to meet and find them.

You can use the questions in this article to help you think about when you need support, what kind of support, and who might be best to provide it.

Keeping those relationships going

A good thing to explore when you are thinking about who your main supporters are is what is going to keep those relationships healthy and lasting. Some things to think about are having breaks; this could be you or your supporters, especially if they are living with you. For example if you’re living with a housemate, it might be important to have your own space and time apart doing your own thing. You might need more paid support in the beginning. As you gain confidence, learn new skills and as intentional natural supports are fostered over time, paid supports can then be reduced.

Create backup plans

You can look at your daily supports and start thinking about what backup systems to put in place when something doesn’t work. Another way to create backup plans is to list out your worries. Getting as specific as possible is the best way to think about solutions. For example, “I am worried I won’t be safe” is a bit general. “I am worried if I can’t get into my home if I lose the key” is more information. This helps you think about learning, routines or technology to make it safe.

There may be some other articles in this topic library that can help you.

This article can help you to describe your daily supports in detail.

This article has lots of questions that can help you develop your vision.

About the author

Bec has had a rich and colourful co-housing history, and is currently in a new phase of ‘creating home’ in her new solo abode. She lives with a disability and currently works at Yooralla, and at Belonging Matters. She has worked in various roles with people with a disability for more than 15 years. Following another passion, of community building, she was also involved previously in helping to establish the not-for-profit Neighbourhood Connect, helping resource and support neighbours to connect with each other.

At Belonging Matters, Bec is the Individual Living Options (ILO) Mentor. She works with people with disability to explore and build a vision for home She helps people then make the move with the supports they need.