In June 2002, we became aware of an ‘accommodation’ option for our son Warren with other young people with a disability in a home established by a group of parents in 1982. I was excited about the possibility for Warren as I had been working towards a similar initiative for some time. On contacting them I discovered the parents’ motivation for creating this place was due to their concern about the lack of community-based accommodation for their children, a universal worry.Seven residents lived there – each person with his or her own bedroom complete with ensuite. They shared the living areas plus full cooking facilities; a lead tenant and casual staff supervised the dwelling and supported the residents. All parents were required to be a member of the committee. I was pleased that the house had been set up by parents and was financially independent of government funds and control.
Basically, we decided it was perhaps a first step and maybe the only opportunity for Warren to move to a ‘home of his own’. It was certainly worth a try and to be honest, would give Allan and I some time to reconnect without some of the worries of Warren being unhappy and extremely anxious. We thought having day-to-day company would reduce his loneliness.
Warren moved into a bedroom with ensuite in the home at the front of the property, and there was one other resident who had a similar setup next to him. There was a little lounge room outside the ‘boys’ rooms, but it was not able to be used.
A purpose designed house had been built behind the original weatherboard home that housed another five residents. He was well-liked in the house because of his usually happy and fun nature.
Warren needed more daily support than others in the house, and so helping him to choose his clothes for the day and keep his room tidy were necessary and this support was provided by the lead tenant. Unfortunately, there was a limit to the support, especially in regard to personal care.
“The greatest danger for most of us is not that our aim is too high and we miss it, but that it is too low and we reach it.” Michelangelo
So I moved out of my comfort zone when I was 59 and Warren was 30 to embark on a journey with Warren towards discovery of who he was created to be. I looked at the lives of others who had achieved a good life for their child with a disability and decided it was possible, not that it would be all too hard. I too was inspired by others! Parents have said to me that they could not achieve what we have for Warren. I hope, through the rest of the story, you will gain some insight that will give you courage for whatever in your life seems too hard. Believe in the possibilities instead!
Perhaps, if you are a parent, you think the risk is too great, that your son or daughter would be unable to live in their own home. When we dream we don’t think of why not, we think ‘wouldn’t it be great if this could happen’. If we limit a person’s right to dream because of their disability, their life becomes a reflection of what we allow, not their choice.
One of the traps is that we determine how people can be safe, before we look at what they require to be happy. We forget there is no such thing as a riskfree life, that risk is relative and has context. What we need is to begin with an understanding of what is required for the ‘pursuit of happiness’ and then seek to reduce or avoid risk within that context.
I started with the belief and created a vision for Warren with a goal to get him a good life and one that made sense for him – a very broad goal. I had no idea where that would lead us, or what was needed for the journey. I just believed we had to do our best to help him, just like we did for Matt, his brother. The vision needed to include principles that we would continue to refer to as positive people surrounded him and helped him to articulate his thoughts and dreams.
To live a good, full and happy life that gives to others by exploring a range of typical and valued ways to contribute to the community.
To have the opportunity to be on the natural pathways of life in valued roles that make sense for me. This means that I will have the individual assistance to be myself in ‘normal’ roles and, be enabled to have access to life conditions which are at least as good as those of the average citizen.
We decided that Warren is unique and his life needs to reflect his own distinctive attributes, skills and abilities, and we would assist him to pursue the areas of life that interested him. Helping to find his ‘sweet spot’, the place where he could
follow his passions and dreams would be our vision.
Though this was new for Warren, I endeavoured to listen more carefully to him, and in the re-thinking remembered what he had indicated through responses in the past about what he did not want to do.
In 2007 I created the ‘Home’ model shown below that demonstrates a home is not just the house in which you live and the people with whom you choose to live, but is also the community in which you have chosen to live. A sense of belonging can be found when home is in a community where you find connection to people and places and are able to participate and contribute to that community. It also gives the opportunity of developing many different friendships and relationships, and is a place
where you are valued, respected and loved.
In developing a range of both formal and informal supports we have found that:
- The inclusion of housemates as part of the support structure for a person with support needs is most beneficial and renders the budgeting of available funding affordable.
- The natural support of housemates can be targeted at the times and in the way that is required.
- The arrangement provides opportunities for the development of natural relationships and friendships.
- Housemates can be a pivotal link to the other supporters (both natural and paid), and they can provide invaluable insight when participating in the Circle of Support that is a crucial element in the support plan.
- Whilst it may not be for everyone, this is one of the most valuable ways to support an individual with a disability in their own home, so they can live a life that is typical of others in the community.
Looking from a very personal perspective, the success in recruiting housemates for Warren has involved prayerful belief in the possibility, and trust, especially through difficult and often painful adjusting to relationship building, and when ‘life happens’. The housemate model has not, and will not always be smooth sailing, and there will be changes, as we have all experienced. But this is just mirroring life for everyone.
Moving out of our comfort zone
Warren was showing us by his behaviour and reactions that he was not happy living where he was. He was becoming more and more anxious to the point of vomiting and would not get out of the car when we arrived back after a day out. Allan and I had a conversation with Warren and asked him if he wanted to stay in his current ‘home’, return to live in the flat on the lower level of our home, or live in a unit of his own. He wanted to come home – to his community – and on asking him why he said “because it’s better”.
Living Distinctive Lives
Our family connected with Living Distinctive Lives (LDL), a small family governed arrangement focused on supporting individuals with a disability to create a meaningful lifestyle typical of other members of the community.
Through LDL I was introduced to the concept of a person with a disability living in their own home with the support of a housemate. Most arrangements were based on the concept that this would be a reciprocal arrangement with benefits to both the home owner and the homesharer. Warren’s first housemates were a former support worker and his partner. This couple lived with Warren for two years – during which time they had their first child. After they moved on Warren met a housemate through a service that links people with disability with potential housemates in a lifesharing arrangement. Warren lived with this housemate for over eight years and they remain friends, still catching up a few times a year.
The housemate model of support has made it possible for many families to see their family member with a disability live in their own home.
Anita O’Brien is the Melbourne-based mother of two adult sons. Anita and her husband are committed advocates for her son Warren and Anita has served on the boards of numerous organisations. She has been a strong advocate, supporter, presenter and writer for many years. This article is a collection of excerpts from her 2016 book ‘Because it’s better… to live my life within community’. These excerpts chronicle the changes in thinking that led her to move Warren from a group situation with other people with disability in to a home of his own. Anita also shares the ideas, frameworks and strategies that helped Warren embrace a life embedded in community with a job, friends and opportunities to craft a life of his own.