Thank you again for your continued engagement, interest and support. I wish you a restful break and wonderful new year.

2016 has been quite the year, hasn’t it? With full scheme NDIS roll-out from July we have seen really big differences between trial implementation processes and new processes created for participants coming in to the Scheme from July. It has been a huge effort to understand these processes, keep up with them, and then communicate them.

The key to NDIS success is a well-informed participant body. Absolutely crucial. I don’t believe that any major reform ever comes ready-made from on high. Change comes from the ‘bottom-up’, when people can grasp the opportunities for themselves and others. I am proud of our achievements in this area and especially thank Katy Gagliardi who undertook an internship with us and has done a stellar job in communicating a great deal of practical information.

It became especially quickly clear that information on really cool things about the NDIS like self management, plan management and supports co-ordination, were not getting the airing or understanding they needed to make them real choices for people in reality. All participants should have the ability to think through every choice in relation to the NDIS for themselves. We have tried to really fill this gap with clear and accurate information.

Around this we have developed a number of well-received workshops around the NDIS. Again we heard over and over from people that they left most workshops feeling more confused. We have been determined to do something different – bringing accurate, practical and grasp-able sessions for people. We know our pre-planning support assisted people to get good outcomes from the NDIS and wanted to share this knowledge with others. So we have thoroughly enjoyed working with more than a dozen services and informal support and carers groups to run over 25 workshops and will continue offering them in 2017. If you are interested, give us a hoy.

2016 has seen us become registered provider for Supports Co-ordination. This proved to be a large exercise for most small organisations, as it was based on processes created around large traditional disability service providers. We are also working on registration for NDIS categories that will help us to deliver our Micro Enterprise Project to as many people in Sydney who feel it would benefit them.

Supports Co-ordination (and Plan Management) – boring names for some cool things in the NDIS! And BTW we have a workshop titled just this to help you understand these things more and what benefit they can bring.

NDIS funding inevitably means more services. We need those services to be working towards outcomes in our lives that bring us solid foundations – work, relationships, home, contribution based on our potential … A life well lived by our own definition! Services are not an end in themselves, they should always be part of the means to something we feel is important.

How can you breathe life in to your NDIS plan? As always, we will be looking to share our learnings in our practice of supports co-ordination, to help people make real change in their lives, and get creative and flexible outcomes from their NDIS plans.

We believe that it is very important that supports co-ordination is also about practices that support inclusion and community connecting.  We need it to be more than a case management service.

Lastly it has been such a thrill this year to embark on a partnership with Community Living Project to deliver their highly successful and evaluated program assisting people to start their own micro or small niche enterprise. Kyle Wiebe is responsible for the program in Sydney, we have gotten started with participants who wish to dedicate resources to this and are very excited for its expansion in 2017. Kyle comes with business and community development experience and it has been great to see people benefit from this experience, and Kyle benefit from the experience and expertise of people with disability.

We will continue to remain open, informative, collaborative and promoting the value of lived experience in creating change.

Thank you so much again, Merry Christmas and a very Happy New Year

Libby

Jo had to go back in time to a time and an activity that she remembered gave Emma joy. She experimented and bought a shredder. Emma now has a business – Master Shredder - with 4 business clients including a credit union and solictors’ offices. She can now see a reason to communicate and is wanting to go out on her own and with friends.

“If I look at you like an impoverished person and you see yourself as a victim, no amount of money will change this.”

Below is an excerpt of a speech I delivered for The School for Social Entrepreneurs titled “Social Enterprise and its potential for creating more inclusive and sustainable communities” – February 20th, 2014.

“I’m very excited this evening to tell you a bit about the enterprise I founded, InCharge, and also to share my thoughts on the connections between social enterprise, genuine innovation and the creation of an inclusive society.

When I was 7 years old, my older brother, Matthew, left our family home, to be cared for elsewhere. Far from aiding our family as it was promised to be, it skewed it, and sent my brother on the path of a different and separate life to us. He spent his childhood languishing and abused in a large hostel and then in group homes. I remember arriving at his 18th birthday celebration to find that the only people there were his immediate family, and the paid staff of his group home. I remember my father cried. It was a wake-up call for me.

Imagine if your only relationships were with people paid to be there? This is the life experience of a client, not a contributor. So something had to change.

Matthew has now lived in his own home for 16 years and shared it consistently with people without disability. He has his own small business built on his interests and capacities. He has frequent gatherings of friends, supporters and family.

The difference is extraordinary. Yet Matthew is only one of 400,000 people with significant disabilities in Australia. So actually and unfortunately his deprivation is not unusual.

InCharge was created to change the experiences of others who struggle to experience a life of contribution and rich relationships. Our vision is a society where everyone’s potential is realised and where we thrive among people who love and care about us.

We exist to assist people with disability be the authors of their own lives. When people are truly in charge they are ignited by possibility in their own lives, and they also have the resources, tools and mindset to go get it. This is a self-directed life. Through our products, services and partnerships we seek to ignite possibility and then assist people put the pieces in place that turn possibility into reality.

Why is this important?

Let’s go back to that moment when my parents stepped forward and asked for assistance. What did they encounter? Well they encountered a human service system. It is now an industry, and it is essentially predicated on the belief that ‘special’ people need specialist solutions delivered by experts in specially built places. Separate schools, classrooms, homes, workplaces and centres to train people and provide therapy and other interventions. Mostly we encounter people as they drive past us in white buses or as they move in groups through our shopping centres. We see them in the distance of our lives. In our desire to assist people get a better deal we have actually created the tools of exclusion.

Such a system cannot deliver the stuff of a good life. It cannot deliver love, it cannot deliver intimacy, it cannot deliver belonging or purpose, friendship, or being an actor in one’s own life.

Ultimately this is what we want for ourselves; a life of contribution, a life of richness.

If we are to bring such an inclusive community to life then we need to look now in different places for solutions. This is all of our business – to look for the real leaders and the genuine solutions.

We are fortunate in Australia that there are now many more opportunities for people to step beyond a life lived in ‘service land’. There are so many more people now who have ideas about their good life, who are trying things and who have different expectations. Who are basically sticking their fingers up at the persistent and draining low expectations that pervades our society.

So we believe that one of the most powerful things that can happen is to shine a light, support and nurture ideas people are generating themselves. These are the places it make sense to look for the kinds of solutions that really create an inclusive society. And this is also where support to social enterprise could be of such benefit.

As the founder of InCharge I have chosen a social enterprise framework because it has allowed the freedom to find the best ways to shine a light and support genuine innovation. It has been so beneficial to explore the kind of petri dish that bubbles and ignites this stuff. Remaining loose but focussed, allows us to explore the spaces between, where exciting things might burst forth. I believe the 4 way partnership that has supported Nathan – who will speak to you in a moment – to become an SSE student is a fine example of this. Social enterprise has really helped us to think about our sustainability. The idea that we can create our own resources and scale when we need to. Focussing on the internal assets and capacities of the organisation as a starting place to generate value, including financial value, has been revolutionary to me coming from a traditional non-profit background.

So you are going to hear from Nathan Basha tonight.

But what other interesting innovations are we finding?

People with significant disabilities are finding ways for themselves to work. Micro-enterprise and small niche businesses are becoming a very attractive idea for many people assessed out of employment support, and otherwise find themselves relegated to a drab life of endless activities, community access and training.

People are finding very interesting ways of being supported to move into their own homes, thus breaking the nexus of the non-choice between being their parents home forever or living with other people with disabilities. They are living with people without disabilities, they are creating intentional communities of disabled and non disabled people.

People with intellectual disability and their advocates are creating pathways into university

1. see University of Sydney
2. and the formative program in Alberta, Canada

They are building their own enterprises built to address very specific barriers – please look on our links page for some fabulous examples.

So what are the threads that bind these kinds of ideas, projects and movements?

I want share with you what I think are some of the hallmarks of genuine innovation. Again I hope you see the universality in these for all of us working to create more inclusive societies.

Sustainability

Long lasting, personal relationships are the key to ongoing quality of life. Innovative enterprises create a more inclusive society by assisting people to tap into the wealth of ideas, people, energy and financial resources within their own networks, or to build these where they don’t exist.

 Active citizenry

People are not just receivers. Innovative enterprises showcase and build on people’s innate capacities and interests, in order to realise potential.

Addressing adaptive barriers to change

When we are seeking to be the author of our own life, many things have the potential to de-rail us. What are the barriers to change that confront those in the communities you work in?

For people with disability for example, the fear of being rejected when you take a step forward in your community can be a huge thing, but making lasting change depends upon stepping forward.? Innovative enterprises aspire to be with and for people in their own efforts at change.

Developing rich relationships

Unsatisfied with the dominance of paid relationships, innovative enterprises break this dominance and offer people a vision of a life lived with many different kinds of people and relationships.

Welcoming environments

Innovative enterprises work with the richness that already exists in our community to assist it become more adept? at inclusion. We don’t need to keep building separate.

Autonomy and control

Innovative enterprises focus on the conditions in which autonomy and greater control by people themselves can thrive.

I think we need to invest in the leaders, projects or enterprises which are attempting to show value in very non traditional areas and seeking the kinds of impacts that go to the heart of an inclusive society then we are on to something very exciting indeed.

Thank you for your time.”

Yep we were trapped, as many families are, in burden-thinking.

Taking the leap into this unknown territory has been one of the most liberating things we have done and THE way that we are ridding ourselves of this kind of thinking.

His supportive housemates have provided support and companionship and so much more, in exchange for reduced rent.

We are searching at the moment for someone new and I realise we have much to share. The joys, the characters along the way and finding the methods that work.

This experience is becoming even more pertinent with small but exciting government changes now enabling people to apply for resources which help them move into their own home .

Shadowlands

My brother spent pretty much all of his childhood in group homes and hostels. This is a much bigger story to tell, suffice to say that it is a wounding experience he and my family still carry. Abused, languishing and lonely, there was not a single person present to celebrate his 18th birthday apart from us. Something had to change.

On reflection, the most important part of this early stage of change was just running with the pure belief even though we had no personal evidence or experience that it would work. We just held to the idea that other people had done it. Other leaders were telling us it could happen. I would walk around suburbs and stand in front of what I thought were beautiful homes (not necessarily the grandest) and just imagine Matthew in one of them. I put myself in the way of stories of amazing people like Shawntell Strully.

Matthew doesn’t speak and he needs help in every aspect of his life. And I mean every. An early experience of his vulnerability was going on a bushwalk with him. I was always adventurous with him and pushed him up over some rocks piled together. He got his leg jammed down one. I knew I had to leave him to go get help. As I was running home I realised that he would do nothing to help himself – he wouldn’t call out, he wouldn’t try and budge his leg. He’d just stay there until goodness knows what.

We really had little foundation to build upon. He had no friends without disabilities, no job, no other roles and we had no money to make things happen. In fact we had nothing that demonstrated such an inclusive approach would work for him.

Stretching into the light

When Math moved from the group home, he moved into a gorgeous little house in Eastwood, Sydney, we didn’t know anyone who could be his supportive housemate and we weren’t ready to advertise for strangers.

So in the early days my younger brother and I lived with Matthew ……

Big mistake!

My younger brother and I argued a lot and really really disliked each other’s habits. I remember vacuuming at about midnight one night just outside his room to annoy him and to demonstrate how important cleaning is goddammit! That was the end of that little experiment in sibling comraderie. But we also had great times. We so relished Math having his own home. We had parties and I’m proud to say that they were so much fun the police sometimes even got an invite!

Matthew’s first small business attempt happened here. We created a bulk organic food-buying group and his home was the base of the group. We would gather and distribute the food and eat and generally have fun together. I loved living with him because it was close to my university and close to friends from university and I just so loved seeing him thrive and develop so quickly. I was living with him the first time he looked at himself in the mirror and smiled! What a moment.

Light-bearers: Math’s supportive housemates

Eventually we had built enough opportunity for Math to meet people through our own networks.

One day my mum and I were chatting with a great friend of mine about looking for housemates. I remember it so vividly. My friend said that she and her partner were looking for a place to live and thought they would like to give it a go. Well my arm literally slipped off the kitchen-island and I almost fell flat on my face.

Bingo – we were making it happen. From pure belief.

But also here is another insight – nobody has nothing. We say we built from nothing. But we had ideas, belief, courage, and others beside us. With these resources extraordinary things are possible. In fact they come before the money. Money doesn’t bring these. Money can only assist these ideas take shape.

So these were Math’s first real housemates and we owe them such a debt of gratitude because their action made it real. And they proved that people without disabilities who aren’t family, can live with a person who doesn’t speak and who has many challenging attributes.

Julie and Math devoured sport together. Adey and Sheree bought their dogs – oh the joy that this brought. So much so that we market to people who have pets now because we know how hard it is to find a place with a pet. And Math LOVES them. Alex and Daniel and their daughter brought the experience of a young family. I remember him patting Alex’s pregnant belly. It’s incredible to me that he understood this entirely complex concept. Daniel also helped Math start his first micro-business.
Daniel discovered his passion in life while living there; cultivating and growing native orchids. He decided to sell them at markets. He invited Math to be his partner. Another jaw-dropping moment. We built a shade-house. Math learned to pot orchids with support. I didn’t think he had it in him to stay on task for something like this. Daniel would get up early and go to markets. Math came along later and would bring new supplies and help man the stall.

I remember supporting Math one day at a market. I set up a chair at the back of the stall-tent in the shade. Math refused to sit there. He walked round the front of his stall and sat in a chair right there! The customers just had to deal with his (strange-to-them) noises and movements. It is hard to shake burden-thinking.

Our new adventure at the moment is to create a different role for the supportive housemate. We’re experimenting with having them much more involved in Math’s day-to-day life and home-making. We want to create a firmer partnership between Math and his housemate, like the core unit. It’s a subtle but potentially life-changing shift again for him. At 41, like many of us, we’re looking to establish more permanency.

Our learnings

• The right person is out there. People without disabilities do want to live with a person with significant disability.
• It typically takes longer to find such a person.
• You need to spend time on crafting the role of the supportive housemate. What is it you are actually wanting them to do?
• Building networks and using networks is a strong foundation for finding the right person.
• But people can also come through advertising. We use Gumtree and Easyroommate. We gave up newspaper advertising long ago. Most people look online now for a house-sharing arrangement.
• We always state what the benefit is to the supportive housemate. This is asset-based thinking. Why is this a great deal for someone? Doing this is a great counter to the incessant creep of burden-thinking.
• We state upfront that Matthew has an intellectual disability. We craft the ad in first person even though he can’t speak or write. The reasons for NOT advertising disability are equally compelling. There is no right or wrong way.
• Spending time before committing, meeting and talking with potential housemates. We have a 3 step process that seems to have worked quite well. Each stage is designed for people to self-select in or out.
• Pay attention to relationship all the time. Pay attention to good communication. We have made many mistakes in this area. We have lost sight of the perspectives of housemates many times and faced the impact of this. It can be of benefit having a non-family member be the main communication line with the housemate.
• Trial periods are good. No commitment time-frame to see how things are on both sides and adjust things accordingly.