Here is the link if you’re looking for more information on where and when.

I am interested in people getting the most out of the NDIS. And for me this means transformation. It means moving from the margins. It means having a life where you are more than just a client or an object of other people’s purpose. I don’t believe that transformation ever lands solely from ‘on high’ or from the ‘top down’.

In my experience those that are smashing our perennial low expectations, who are citizens in the broadest sense of that term, those who can see that their own life means something, all of them have seized moments when the system has popped out with something that can be shaped. Transformation starts with an intent – I no longer desire to accept that what is offered is all that is possible. No planner, no system can make this happen. This is an inner spark for more.

We are undoubtedly meeting a flawed process with the NDIS. I look on forums regularly where the many flaws appear. We’re told there’s a chance now, but many of us wonder ‘is there really’? Much of our life experience tells us that most things that get announced as big and shiny and wonderful never turn out to be that way.

In my personal and working life I’ve seen the terrible – segregation, exclusion, low expectations, congregation. I’ve also seen the flip side. I’ve seen what it looks like when people are experiencing and striving for their deep yearnings – to be someone, to belong, to love and be loved, to contribute, to feel their own life speaks and means something. I’ve learned a thing or two about the journey from one to the other.

These are some of the elements that I think are core to this change. It’s more than a package of support. Yes, having dollars are essential to exercising and maintaining genuine authority in your life. Being in charge of those dollars too. But it’s more than the money. I’m sure I’m not the only one who has seen extraordinary resources spent on things which do not really improve life opportunities for people. Instead they continue to waste people’s lives.

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“If I look at you like an impoverished person and you see yourself as the same, then no amount of money will make change”

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This is the practical work of InCharge and so my vision of being a contributor to those wanting to grasp an opportunity for change. To work with people on their desires for themselves and their lives. And then help put the pieces in place around that – including supports, dollars, staff, services – that will help bring those things to life. We build from the ground-up with people.

Many people can’t speak these desires. That doesn’t matter. There are many ways this can happen. It may only be a niggling – surely there is more to life than seems to be on offer! Or an expression of continued dislike and complaint. A long list of things that aren’t right (this is how my family got started on change). Or non-verbal expressions of profound unhappiness and lack of control. People who are crying out for change.

We must also demand differently from our systems and services. This is a ‘top down’ piece to be done by our governments and by the NDIA. There is a lot of work to be done to move away from ‘special’ programs and solutions that further serve to segregate and exclude people. I was very heartened to hear Rhonda Galbally speak at a conference in Sydney recently where she described work that the NDIA Independent Advisory Council had been doing on ‘reasonable and necessary’ supports. The starting point for that she said, is the question “What is an ordinary life?” This is where we should be moving with reasonable and necessary. The NDIS should be funding the gap between the answer to that question and where a person finds themselves. This would help stop the NDIS from thinking more of the same is OK, she said. Hopefully the proof will be in the ILC and planning process pudding. How does this come to play out in the planning process regardless of the planner sitting before you?

But life is more than a planning conversation. It is also about how we choose to use those resources. What we direct them towards. Are we asking for different as well?

These are some of the qualities I think are characteristic of genuinely innovative service responses.

Focussing on sustainability

Long lasting, personal relationships are the key to ongoing quality of life. Creating 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.

Promoting active citizenry

People are not just receivers. 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. For many people 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.

Aspire to be ‘alongside’ (not doing for) people in their own efforts at change.

Developing rich relationships

Dissatisfaction with the dominance of paid relationships, and so breaking this dominance and offering people a vision of a life lived with many different kinds of people and relationships.

Welcoming environments

Working with the richness that already exists in our communities to assist it become more adept? at inclusion. Enduring relationships do not come from services, they come from the building blocks of the neighbourhood. That means investing in communities to become more competent. It means supporting an individual by growing community with them so that a service is not the bringers of the answers, but the bringers of the questions.

Autonomy and control

Focus on the conditions in which autonomy and greater control by people themselves can thrive.

This is more than just ‘goals’. People need to be ignited by something to strive for in their life. But they also need supportive, encouraging and challenging people around them. They need valued roles and services that are personalised and directed by people themselves.

I look forward to building and seeking these responses.

Libby

Photo of Laurel Lambert

Guest blog by Laurel Lambert

Laurel’s daughter, Peta, and her friend Natalie, recently purchased a unit with the help of a mortgage. They also live in the Hunter, NSW, and have been through the NDIS. She says that one of the biggest factors in making change is having an ambition that is worth the effort and that you know, deep down inside yourself, will help you to be in a good place.

Want to hear more from Laurel about preparing for change? Click here and join us for our next webinar on 20th April!

We are here, at the pointy end of social reform. For those Australian citizens who live with disability, the National Disability Insurance Scheme promises greater possibilities through improved choice and control over one’s own life. Those among us who live with disability or love someone with a disability, welcome this change.

At the same time as welcoming such a reform, there are many among us who also ponder the question about what this may mean personally, how might it look, how might it feel. Some of us see it as a trigger to wonder what it would be like to live another way? The potential stirs feelings within us like hope, anticipation, uncertainty and anxieties about future risks.

Should I, shouldn’t I, will I, won’t I, I can, I can’t.

Such emotions are completely understandable when faced with such predicaments because for a long time, people with disability have been cocooned in services that have been prescribed by others. Choice has been limited to a pre-determined menu of activities. Such circumstances inhibit the ability to think beyond one’s daily parameters.

Being leaders in our own lives

Now, the ‘big ask’ that stands before us today is throwing up major challenges. This can be due to our lack of exposure to the notion that we alone are now responsible to shape our own destiny.

While ever we are alive, change will be an inevitable and many of us will be sorely in need of some solid leadership. Not the type of leadership that permits us to follow but the type that allows us to lead.

In a time of uncertainty, we often look outside to others for the answers. But in my own experience and in my work with other families in my community, I see that we actually have what is needed to make the most out of change.

Deep understanding

To take a step into change like this (what might it be like to live another way?), transformational leadership is needed. Such leadership can only be born out of a deep understanding of the individual, for this is the instrument through which one can motivate the person to desire change.

It is crucial that any aspiration must be formed out of the person’s own genuine insight and knowledge that there is a place where they truly wish to be.  Having something to hold on to, to aspire to, is a great driver through uncertain times.

For my daughter, and her good friend, having their own home, and more than this, owning their own home, was the light that helped us move through all the uncertainty of change.

Allowing free exploration of ideas

Secondly, it seems perhaps obvious to say, but we had to match this intimacy and knowing of the person with a creative, optimistic and welcoming environment in order to achieve this outcome.

Igniting enthusiasm, selling the benefits and painting a picture of future accomplishments, I found invited participation and developed a unified theme. Creating these shared values also fosters an attitude of continual growth and mutual respect.

We are also in a very good place to bring forward the other skills needed to bring about such desires and ambitions.

Authenticity

Firstly, the ability to know the kinds of communication styles that are going to work best for the person developing their vision. Without this a clear and honest outcome will not be achieved. Secondly, working in a framework of humility and authenticity, never forgetting that the ‘leader’ works to stimulate the environment, not create the thought.

Flexibility

What I also learnt to see is that some processes capture the imagination and energy of the person, and others do not.  What we do need to learn is that it’s OK to eliminate a pathway and try again if necessary. Perhaps a different technique may invite better outcomes. Reinforce our optimism that all is not lost, we are all still on our ‘L’ plates.

Letting go

Lastly, a key trait of the ‘leader/facilitator’ is to know when to surrender the leadership and power to the person so that intellectual stimulation, individual consideration and eventual personal motivation to change the status quo can occur.

Yes, we might feel rightly worried and uncertain at the prospect of change. But we also possess the foundations, when directed clearly, that can so genuinely assist another to take control. It is these foundations we can refine and develop in order to produce the guiding light through change.

Let people own their world, be the architects of their life, let them work to change it and so become that person they wish to be. In the end, their life truly belongs to them alone.

Want to hear more from Laurel about preparing for change? Click here and join us for our next webinar!

More about Laurel:

Laurel Lambert is a parent, a guardian for several others & a representative for several more women living with the NDIS. For many years, she has advocated for people to live inclusive lives. Laurel has worked in the voluntary & paid sectors of the disability industry for over 40 years. Currently, she is the Chairperson of a carer group whose mission is to build good lives for their family member with disability.

A lit match ignites a row of other matches

This is a follow-up piece to my blog titled Shadowlands: Institutions Big and Small and is a re-print of a newsletter article I wrote for Community Resource Unit. Great newsletter – grab a copy here.

Institutions come in all sizes, but they all begin with separation. Such separation shapes the identity of the people who live in them – not just how they are seen by others but also how they see themselves and their place in the world. My brother Matthew grew up in institutions. Living away from us firstly in a hostel and then in a number of group homes. That was a long time ago and much has changed since then. We have come a long way down a path that has helped us to create a real place of belonging for Matthew – in his own home and a community of his choosing. In this article I am exploring what it took from within us, for this change to occur. It started with a ‘leap of faith’.

I had an insightful experience recently around leaps. I needed to make a decision around something that felt emotionally hard and I was encouraged to try something different to my usual ‘think it out’ approach. Somebody close to me suggested I try a process to gain a different perspective to get me out of my head. This person has much experience helping others who have the same affliction.

The process was to externalise the decision, to help me move from my head to using my body and objects. I was asked to choose objects to represent the decisions or the problems as I saw them and then I had to place them wherever they made sense to me. Very interestingly, the decision I perceived most difficult was the one I placed closest to me. The person invited me to take a step into that place in order to feel what it was like to be there. I had perceived this step as an enormous leap, too hard to take safely really, but there it was, in front of me, only a footstep away.

I was then told to literally step in to this new space and yet I hesitated… a lot. I saw it right there in front of me. Strangely it was very scary to take the step but once I did, I knew as soon as I was there that it was the pathway I wanted. When I was ready this unfathomable leap became just a step.

What I think happened was that I stepped out of my thoughts and their supposed logic and into my gut and heart space. I felt the change I needed to make and this made all the difference. When I felt it, I couldn’t talk it away – there was no going back. All the difficulties still seemed to be there, in the path of this decision, but my perspective on them changed. They began to feel less like difficulties and more just things that may (or may not) happen and just a natural part of the process.

Building the stack

This was what it was like for my family in the build up to when we helped Matthew move into his own home. Some of my earliest memories from this time involved a lot of communication within my family about what was wrong with Matthew’s life. A lot of complaining, if you like. But we did it with each other as we shared the inkling that surely life has got to be better than this. During this time we were building our understanding of what it was we were not happy with. This was in the days before self-direction or personalised support and notions like ‘consumer governed’ or ‘family governed’ had not yet crossed our paths.

I also remember being present with other families at conferences and education forums as we grappled with the question of ‘what could be’. The conversations started with all the things that are wrong and moved over time to better ways of doing things to not only replace them, but to make them obsolete. Piece by piece we were building a vision of a better way.

For my family the vision we were building included Matthew having his own home and a crucial element of this was wanting Matthew to not have to face strangers any more. The pain of dropping him off at the group home to a stranger who didn’t know him or how to communicate with him or even take care of him was excruciating. The heart ache of that was too much. Imagining him at one moment being understood, nestled and loved, and the next moment being completely on his own amongst others, fending for himself, was awful.

Inside us at that stage were murmurings that things weren’t right, but we needed an external trigger that helped us see the possibilities. All we needed was a spark to ignite us and turn these imaginings into possibilities. We needed to be exposed to the possibility that somebody with a severe intellectual disability and autism who doesn’t speak could have their own home and that other people without disabilities would want to live with this person.

What happens for so many people and families is that they live in systems where others are traditionally given the role of problem-solver. This encourages families to dwell in problems and as they are encouraged to give over their power to others in the belief that those others are the ones who will create the solutions. It can also encourage them to dwell in waiting – waiting for the funding package, waiting for the next service. When people are waiting they are largely passive. It is the path of victimhood. We found this to be a bitter, soulless place to be.

Spark

When something else comes in there – I see it as ‘possibility’ – then there is the spark that can lead to a shift. I define possibility as something I have not yet imagined for myself and this is always most powerfully communicated through a peer – that is, seeing that it is possible for someone like me. ‘Possibility’ was the kind of external trigger we needed and once we had that our imaginations ran wild. We dared to imagine him being involved in his community because we saw that others were doing it. We dared to imagine him living with someone who didn’t have a disability because others had shown us it was possible.

‘Possibility’ has got little to do with centres or service providers or case managers or assessments. Ironically, ‘possibility’ dwells in ordinary things that make life great for all of us and makes us want to get up in the morning. These things are the possibilities for all people, even people who most challenge us.

Ignition

Once we were ignited by possibility, we needed to take ownership of that possibility; see it as not just an idea somebody else had made happen for themselves, but something that could fully take its own shape in Matthew’s life. We were the ones who needed to make this change. It was not the responsibility of anyone else – government, service providers, case-managers, Local Area Co-ordinators etc.

That is not to downplay the importance of collaborating with others. We had many genuine and valuable allies that helped us make our vision for Matthew possible. In fact having professionals on board helped us facilitate new breakthroughs. They were most useful when they were true allies. Allies because they had taken ownership of the part they could play in change. Their work was genuinely transformational and that’s what made them good.

I also remember inviting our long term family friend, Jane, to help us. She became Matthew’s first circle member when we all began talking together. I remember my mother’s tenacity and strength.

Fanning the fire

Once people are ignited then a fire is built. That’s when we see this idea of a fire burning in people’s lives so this is then about creating and tending to what you imagine. Moving from possibility to imagination to then creating that thing that you want. These are really the conditions for personal autonomy, for being in charge.

I remember when we had been overcome with the possibility of Matthew moving into his own home. I would wander the suburb where we imagined his home would be (a suburb close to my university where many of my friends and other young people lived). I would stand in front of lovely homes (not grand homes ) that I thought he would like to live in and picture him there.

It is important to continue to add fuel to your own fire by keeping in touch with peers and possibilities. The point is not to light the fire once, but to keep it burning and the more people attend to a fire the longer it is going to burn. We are thinking about this idea of sustainability, of keeping something going, of keeping something alive. For this you must do another potentially challenging thing. You must be with others, especially those that can lovingly challenge you, and you must nurture those relationships. If you do this work on your own you will have a harder job keeping that fire burning.

I know that Matthew’s life, with supportive networks (both paid and unpaid) around him, is something that helps other brothers and sisters to get involved and plan for the future. To feel more able to think about developing, building and sustaining these supports after their parents have died. If there aren’t these networks and all you can see is you, it starts to feel again like an enormous thing you will have some-day to ‘take on’ – but this is for another article!

Conclusion

The lessons I have shared from our experiences with Matthew are relevant both on a personal level but also one much broader. The process I have outlined above is relevant to people looking to create change in systems as well as in the lives of individuals with disability.

The families of today are taking these leaps and being ignited by the ‘possibilities’ shown by other families. They are grabbing the possibilities – stepping in to them, feeding them and making them their own. They are building networks to fan the fire.

My hope for the future is that we can assist each other, from the space of radical change, to grow new organisations, projects and enterprises. Working with people as they do this work for themselves, so that when they take this leap, it might not feel like a jump into the abyss.

This piece of writing came to life in conversation with my friend and mentor, Pam Morris, and a social enterprise mentor, Tracey Allen. Pam’s son moved out of Peat Island institution in NSW. She was the only parent who supported its closure at the time. It didn’t close but her son moved. 

or The Why of InCharge – Part One

This week we have been necessarily reminded, through some great advocates, that there are still institutions for people with disability in NSW. Yep. We’re rolling out the National Disability Insurance Scheme, but for example, there are still over 400 people living in Stockton Centre in the Hunter Valley. Have a look at the others. I know many people who would have the same ‘label’ as people living in these places, and quite probably similar impacts of their impairments. However, just a glance at my Facebook newsfeed this week wonderfully shows people in school, at rock concerts, working, coaching sport, volunteering…. How come we have both possibilities, so diametrically opposed, co-existing still?

Well I know there are lots of reasons and lots of research (fantastically ignored). But these are my thoughts about it.

Firstly that these experiences co-exist shows that it has nothing to do with any supposed objective description of a disability label that implicitly means that some people couldn’t possibly, while others possibly could. “Well he has complex needs” just doesn’t cut it because people with complex needs are, at this minute, also rocking out to Nine Inch Nails.

Today I thought about my younger years fascinated by, and researching in the area of geography.  ‘Disablement’ is partly a spatial process. By this I mean that space and place shape identity. Separation, isolation and segregation are spatial processes. Think about apartheid. Inherently a spatial process. Once people are separate we then establish norms which maintain division – boundaries between ‘us and them’, ‘same and other’, are produced. It means that people are deemed ‘in place’ when they are separate, and deemed out of place when they desire to be part of the everyday, the ordinary, the taken-for-granted that so many non-disabled people (me included) get to experience.

But also places become a lens through which we see people. So a centre like Stockton, itself radically shapes how we see the people in them. We end up thinking “well they must be in that place because they are so disabled and this is therefore the best place for them”. Meanwhile the dude rocking out to Nine Inch Nails is thought somehow to be less disabled.

Let me tell you a little story about how place matters. My older brother has very significant intellectual disability and doesn’t speak. You can look around this website and check out some videos of him. When he moved into his own home about 16 years ago, I was living with him for a bit. His garden started at the side of the house and wound around to the back. One day I was round the back and I could hear an unfamiliar voice in the front. I started wandering around to find a man asking my brother questions – I think he was lost. The guy hadn’t spotted yet that Math couldn’t speak and wasn’t answering! He was having a good old chin wag. It was really an incredible moment for me. I remember just standing and watching for a moment. I know that the place – a home in a street – communicated a role to that man and continued to be more powerful than the impact of a disability on his understanding and perspective.

Another little story. One day 4 of us were squashed up on Math’s couch together – him and me and 2 friends – lined up like cute little Kewpie dolls having fun.  Math’s support worker came through with a tradie and began to introduce us. The tradie was a guy who did all the odd jobs for Math’s disability service provider. He started ‘big waving’ to us and called out a sing-song “hello everyone!” as he slowed his voice down to speak with us. I was looking up at him thinking ‘we’re all lined up on this couch and he thinks we’re the ‘residents!’ I tell you we laughed until we cried after he left.

Space is a medium, a communicator of expectations. In small ways and big big ways.

There’s a history, in my family too, of the wounds of institutionalisation.

When he was 9, Matthew moved into a hostel which I think had about 15 other people with disabilities living there. I remember it as a big old hollow place with lots of dark wooden furniture, panelling and doors, wipe-down furniture that squeaked, heigh ceilings, and big foam shapes lying around. Lots of strange noises (Math’s noises weren’t strange to me. I knew what they meant even at that age). It had a smell to it. Urine, cleaning liquid, washing detergent …. it smelled like institution.

The group homes he lived in subsequently also had that smell sometimes. Do you know that smell? Well I guess I do. And I first smelled it then when I was 7 years old.

From ‘I need help (to keep my family going well)’ to institutional living. What kind of society makes this the solution to the issue being presented? Turns out pretty much every western country and turns out it’s a habit hundreds of years old.

Institutions come big and small. They can be a house with 4 people with disabilities staffed 24 hours a day with ‘carers’. They can be one kid with disability stuck up the back of a classroom learning a separate curriculum glued to an adult ‘support teacher’. Or removed so much for “extra learning” that there is really no point in being there in the first place. They can be our own family desire for creating security, long after we die, by building things to put people in. They can be the leap from “John needs friends” to “Let’s create an Asperger’s social group” rather than “Let’s figure out the kinds of people John might like to meet in his community based on John’s inner-ness”.

We’re plagued by the notion that building things and creating more services is the solution to the life needs of people.

So Math spent a life from 9 years old to when he was 26 years old, living, recreating and learning with other people with disabilities. Apart from us and people paid to be with him, he knew no other non-disabled people. Because he didn’t speak and because many others couldn’t, he really didn’t form relationships with anybody. He formed relationships with people who could speak – so his paid carers. But they came and went. Form attachment, disappear. This is the stuff that Math learned about relationships and trust. I call him our weekend brother because that’s when we would see him – weekends and some holidays.

Around 20 years ago my family started a group conversation about what was wrong with Matthew’s life. 16 years ago this eventuated in him moving into his own 3 bedroom place with my younger brother and I.

I think we are also plagued by the conjoining of 2 things: low expectations (fabulously, depressingly low) and seeing people only as they are. When someone has been institutionalised they become someone they are not. Or perhaps more that we don’t know, we can’t imagine who else they could be. We can’t see it. We have no experience of someone other than how they present themselves in a place that circumscribes their identity. And also that person has no experience of who they might become.

This was Matthew’s experience and we needed to take a leap of faith. To create something that we had no experience of. To act purely on imagination and vision.

Part 2 – the importance of possibility in change.