The right people are more likely to step forward when you are really clear on the purpose of paid support. Additionally, people are more likely to stick around when they are fully informed of the expectations and when they understand and share your vision. Unspoken or hidden expectations tend to lead to disappointment and to unnecessary turnover.

Start at the end

Asking the question, ‘What is the end result I am looking for?’ is a really great way to start thinking about purpose.

The importance of such a question can be revealed in exploring this scenario. Consider someone who likes gardening. You might consider matching paid support to this interest and conclude that finding a gardener is the way to go. Taking some time to consider purpose, however, can reveal some interesting differences. If the purpose of the role is to build a garden, finding a gardener might work. But if purpose is to increase opportunities for connection to others through this interest, a person only skilled in gardening may not cut it (excuse the pun).

Here are some other ideas to assist your thinking.

Think about how others get the task done

Ask: how do other people get this thing done or achieve this?
Firstly, think about the task that needs to be done. Now think about how that same or similar issue is solved by other people. How do others in our community get this kind of thing done?

This gives us some great clues on what we want to model and replicate. Sometimes we tend to jump to service and paid responses first. But asking this question allows us to take a breather and see if there are other solutions we could put our energy into (the time and energy we would be using to find paid assistance or service solutions).

So give these scenarios some consideration in light of this:

1. You’ve lost track of time and now your garden is in need of a makeover.
2. You need your lawn mowed regularly

• you have never tried mowing a lawn before and aren’t sure if you could do it.
• you could learn but you aren’t interested and prefer to dedicate time elsewhere
• you aren’t able to mow your lawn

What are different solutions to these scenarios?

Generally the more formal, regular and structured the task is, the more likely it is in our society, to seek a paid solution. But a lot also depends on our family culture, background, gender, the place you live, income, age…… So think about what makes sense to you.

I know in my life, I would be more inclined to turn my dishevelled garden into a social opportunity, provide food and drink or even offer to assist friends with something in exchange for their help. Our lawn is large. I can learn to mow but I’m not interested in mowing. However, this is not something I think is reasonable to ask a friend or neighbour to do on a regular basis. Sure – collect my mail, feed my cat for a couple of days. But not mow the lawn regularly. A neighbour might offer because we have built a reciprocal relationship, but this is different to me asking. Additionally our living expenses mean that getting someone else to do this regularly is not possible. So I need to mow my lawn. But you might have a different response that fits your culture, family, income, community etc! It’s the process of thinking through that is important.

This kind of thinking helps us understand the place of paid support, whether it is actually needed, and also helps us think about the place of informal relationships and whether we could focus energy on this rather than on paid support.

So ask yourself: what can a paid person bring that natural support might not bring? How can paid support add value to what I already have? (not take away or cut off an opportunity for growth of other kinds of relationships)

Regularity, structure and formal teaching are some examples of answers to these questions.

Some other examples are:

• Social connection/bridge building into different parts of a community
• Building a fuller picture of who the person is: helping the person learn more about themselves, trying different activities, exploration and trial. This can be important for people whose interests are unknown or unexplored
• Learning new skills
• Personal care
• Role modelling and mentoring – behaviours, feelings, thinking
• Generating new ideas – creative, innovative, considered ideas
• Team development – developing the cohesion and functionality of a team
• Work or business development

Clarity on role and purpose really helps us to hone the characteristics we are looking for in people. What qualities, skills and interests are we looking for in people? Let’s look at that next.

We’d love to hear your thoughts on successful techniques.

If you want to learn more,  join us for our upcoming webinar on December 9 2014!

Click here to hear what a participant has said about our sessions.

L-R Libby’s husband, Libby and Matthew

I find myself often being asked by parents and those who work in the disability sector about being a ‘sibling’. Have there been difficulties growing up? How do I get my kids involved? I don’t want my other kids to be involved because they have their own lives. What strategies can I use in my work to help parents think about their other kids? How do I even get to talk to siblings as we are always talking to parents?

Here are some of my thoughts about the whole area.

Some themes

Brothers and sisters are likely to have the longest relationship with a person with disability. Usually continuing after parents have died, they can last for 70 years or more.

I have run workshops and also observe the roles of siblings in many of the families I work with.

I’ve heard some interesting comments made and stories shared. All with some common themes it seems:

1. A desire by brothers and sisters to be involved but feeling ill-prepared and uncertain about this
2. Families are so crucial to our well-being but they are a mish-mash of power dynamics
3. All sibling relationships are ambiguous. Basically you love and hate your family at the same time but, strangely, this does not diminish love.
4. There exists a deep emotional paradox with many parents. They both want their other children to be there in the future but they also want them to lead their own lives. Even when unspoken, it remains an energy in families and is often hard to talk about
5. Many siblings appear to watching, thinking and planning in their own heads, regardless of whether it gets talked about. They sometimes have very complex and finely tuned plans worked out about where they will live, what will happen for their sibling etc.

The Orders of Love

The Orders of Love is a theory by a guy called Bert Hellinger (Get you Google fingers going) that I have found very helpful in thinking through some of these dynamics.

There is a natural order to a family that is unchangeable (even through events like divorce or death). Parents are first in line. Then there is the first born sibling, the second born and so on. Imagine it like a line of paper cut-out-dolls.

Image of paper cut-out people

When siblings marry or have a long term partner, they then create their own family, their own ‘paper-cut-out’. Their primary relationship moves to their partner and then often their own children.

However, I think a social dynamic impacts many families in which there is a child with disability that can disrupt this. This dynamic is best represented by those relationship circles that Judith Snow so beautifully captured many years ago. Below is a (sort of and generalised) depiction of the layers of relationship most of us have in our lives.

Circles of relationship

But what is a common relationship experience for many people with disability?

This can often contrast hugely to other brothers and sisters whose lives and relationships expand as they grow up and they develop their own intimacy circle separate from their parents. This is actually the typical experience.

So one of the keys to strong siblings relationships is that each sibling gets to have their own wonderful web of relationship circles that are their very own. There isn’t pressure or a feeling that siblings have to become the primary relationship for the person after the parent and as they get older. Imagine those paper dolls look like this – where each person in the family gets their own life. You can see that people aren’t then dependent upon each other for relationship, but rather get to contribute to each other.

Three different circles of relationships

This implies a responsibility by all involved in the life of a person with disability to be working towards building a rich life with lots of different layers of relationships. A life like this mirrors what happens for people without disability.

Other things that are important to consider

Providing siblings with the opportunity to develop understanding of ‘the system’.

Remember, parents have gathered this information over the lifetime of their child (even if they think the system is unsupportive) but it is actually something that needs to be learned especially foundational information like

1. positive stories of inclusion
2. learning what valued roles are and developing a vision for their sibling
3. developing their own vision and having a chance to dream for themselves
4. talking about and mapping our family relationships

A sibling cannot be a parent!

Be wary about looking to ask for involvement based on a parental role. Even when a parent dies, the sibling relationship will stay that way. This doesn’t mean that brothers and sisters won’t play a key advocacy or safeguarding role in the future. But it is healthiest if it comes from their sibling relationship.
It might not get talked about, but caring siblings will be thinking about these things regardless.

Brooching these topics can take us to very raw, very vulnerable places. But it can be crucial for everyone’s peace of mind into the future.

Stereotypes are mental slavery

“Some stories enhance life; others degrade it. So we must be careful about the stories we tell, about the way we define ourselves and other people.” (Burton Blatt)

NPR is an American non-profit membership media organization that serves as a national syndicator to a network of hundreds of public radio stations. Three days ago, it decided to publish this image on it’s Facebook page. It gathered thousands of comments, so they contacted the photographer and wrote a follow-up piece about why they decided to publish the image.

We were told that the photographer, Andrew Nixon, shot this image in an effort to show how being caregivers affects the ageing parents.

SBS Insight then posted it to their page, again with many hundreds of comments.

That this is an image of a father who deeply loves his son, I agree.

That this image portrays a reality that remains largely invisible in our society, I agree.

That this image is likely well intentioned, I believe you.

But that, because of these things, it was OK for the photographer to have published this image, I disagree.

I want to try and explain why in the hope of opening up a different perspective. I say different, because the vast majority of online commenters have responded to this image positively.  The vast majority have agreed that this image was fine to publish because it shows love, it shows a reality, and because consent was provided by the parents.

It’s difficult to write about this without seeming to lay judgement on the father (or the family). It’s true I know nothing about either of these people. But neither do most of the people looking and commenting on this image. None of us do. And this is important because imagery like this is so powerful and sends messages about both the young man in this photo as well as people beyond the image.

And so this is the first reason I don’t think this image should have been published. It confirms, not disproves stereotypes.  That’s why I chose the image for this blog, because it links firmly to others arguing similarly – what does it do for the continent of Africa for continued portrayal of people begging, emaciated and desperate?

I believe that any benefit provided by opening up discussion around the issue of carers who are ageing is outweighed by this. In fact, by confirming stereotypes I think this image has served to promote the needs of one party at the expense of another.

Some of the stereotypes about people with disability I think this image re-inforces:

Honourable burden

Forever child-like

Non sexual

Incapable

Paulo Friere wrote in Pedagogy of the Oppressed,  “The oppressor shows solidarity with the oppressed only when he stops regarding the oppressed as an abstract category and sees them as persons who have been unjustly dealt with, deprived of their voice….when he stops making pious, sentimental and individualistic gestures and risks an act of love”.

One of the outcomes of confirming stereotypes is that we limit possibility for people.  People that we don’t even know!

And without knowing anything about this young man, I would argue that we are largely left with a sense of greatly diminished capacity.

But is this reality? When we see people in this way, the possibilities for them have already been limited.

Can this young man learn and grow? Can he communicate? Can he reciprocate? Can he have a positive future? The answer to all these questions, even without knowing him, is yes, because to be human is to have these capacities. Yet when we see images like this, perhaps we wonder that maybe the answer is ‘no’. Imagery like this doesn’t help us move past those in-built hesitations about people with disability. It doesn’t challenge us in a way that brings new understandings about people, that smashes the limits of our preconceptions. We think we are seeing something new. But unfortunately we are actually just seeing more of  the same.

People with disabilities too have something to say about the issues surrounding ageing carers. We need imagery and discussion that illuminates all perspectives on this issue and doesn’t sacrifice one at the expense of another.

When we use images like this, we serve to make distance the continued norm. And by doing that we actually weaken the strategies for inclusion and acceptance. This goes against what a movement of people with disabilities and their allies and families want.  With all our might we want people to be accepted (because rejection is the norm), to be included in their communities (because exclusion is the norm), to be seen for their full self (because most experience is about being seen as the sum total of a ‘label’).

There are great numbers of people who, each day, need any number of very practical tasks done with and for them. They need assistance with lifting, bathing, eating, toileting, transport and mobility, drinking, hygiene, communication etc etc (and all deeply desire for these tasks to be performed with the care that can be seen in this father’s eyes). But these people are also university students, school students, lawyers, government bureaucrats, community development workers, workers of all kinds, worshippers, volunteers, partners, and parents themselves.

When we see images like this, what kind of connection does it establish? Can we imagine ourselves studying with this young man and inviting him for a drink in the cafeteria, or saying yes to offering him a job should someone ask us? Can we imagine our children being friends with him? Can we imagine him as being anything other than cared-for for the rest of his life?

Yes ‘caring’ can regularly be completely shithouse –  tired parents who have cared in this way for years and years and years. Undervalued, un-resourced, taken-for-granted and invisible in our neighbourhoods and our minds. As a sister, I do sometimes (it’s hard to go there) think about the prospect of caring for my brother in his old age (and my old age) and quite probably his final days. What if he outlives me? Yes, I’ve sensed the edge, the unexpressed wish. And one day it will be as real for me as it is for my parents now.

But caring is also a deeply paradoxical and often beautiful experience. I don’t believe you can keep doing the shithouse without the experience – even for the briefest of moments – of the other side. The things you get to see and know deep within your bones about that person because of the deep connection that caring has brought about. The world might not think the person capable of much, but your caring experience tells you otherwise. And because you know this, you keep fighting and you keep caring.

If I hadn’t been helping my brother in the bathroom many years ago, I would never have experienced the first moment I saw him look in the mirror and smile at himself. What a profound moment amongst the banality of caring tasks! The world may think that it is better not to be disabled, but my brother thinks differently. It will power me for the rest of my life.

There have been cherished times with my brother when I have asked ‘who is the carer and who is the cared-for?’ Moments when I have felt terribly down and upset. Now my brother’s disability means he is unlikely to have grasped the complexity of the issue, but he has certainly sensed the emotionality, the feeling coming from me. He has reached out and loved me tenderly in those moments. When I travelled overseas for a long time, apparently he used to go to the top of the stairs at mum’s place and look down to the floor below where my bedroom was, thinking of me in his own way.

When we always portray people as the recipients of care, we again set up an us and them. One can only be the carer and one can only ever be the cared-for.

But I believe relationship and “…attachment arises from the human capacity to move others and be moved by them. Being dependent then no longer means being helpless, powerless and without control: rather, it signifies a conviction that one is able to have an effect on others, as well as the recognition that the interdependence of attachment empowers both the self and the other, not one at the other’s expense.” (Gilligan, 1986)

And this is the point. It is not empowerment if we sacrifice the rights and interests of another party in the process.

Here is an example of an image and an article that portrays things quite differently, while still bringing us into awareness of the issues.

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.

A young man talking with four other people

We recently held a workshop called Nurturing your Tribe. We were thrilled to find people with disabilities and their families attended with other people they had made an ask of; like becoming a housemate, or a friend whose strengths could help achieve something. We just loved playing a part in nurturing these vital relationships!

At one stage a young guy, Matt, stood up and spoke to us about being asked to become a housemate. He told us he’d known Chris at school and then after school they had continued to be connected in similar circles. Then he and his girlfriend were approached by another woman they knew, Jennifer, and asked if they were interested in considering moving out with Chris and sharing an apartment together. Both knew Jennifer- Chris was now employing her as his ‘lifestyle facilitator’ partly because she was so well connected.

Matt talked to us about the process of being asked and why he and his girlfriend said yes.

He told us that it was important to hear it from Jennifer because he knew she would be giving solid and trusted information – that it would be as she was saying.

He also gave insight into 3 essentials for a really powerful ask.

1. What’s in it for the person being asked

When you are making an ask consider what could be of benefit to the person being asked. Matt said it hit them at just the right time.Trying to move out into your first place in Sydney can be really hard. They were talking about moving out together but financially it was difficult. Chris’ offer involved financial assistance to make it work (in exchange for some roles and responsibilities with him). It was going to be a win for them.

2. What’s in it for the person

Matt told us that he had always been so impressed with Chris and could see what he had achieved so far in his life. He and his girlfriend were delighted to be asked to be part of helping Chris get further, of helping him take the next major step in his life. He said “we love being part of Chris’ story”. This is a big win for Chris.

3. What’s in it for a broader group or the community

Matt told us that he knew Chris had a wider support network, and could see how their contribution would help to strengthen this network and see the fruits of their efforts come to life. They wanted to be part of that network too and the bigger vision. This is a win for Chris’ parents, his brothers and his community.

So give it a go. Think of your ask in 3 parts. Imagine into all of them – don’t just think ‘what is in it for the person’ but also ‘what COULD be’. Check you have considered all of them. Let us know how you go.

Self Direction opens up an exciting array of possibilities and more than ever the opportunity to be the author of your own destiny.

But sometimes it can be hard to fathom just what is possible beyond our current experience. Being in charge is more than about having control over services, funding and supports. It’s about harnessing that control to break with the past, to get innovative, and to embark on new ways of doing things.

Download the word version of Getting creative with paid support

Download the PDF version of Getting Creative with paid support

“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.”

At InCharge, our mission is about working with people to discern the personal and collective elements that are going to make self direction a lasting experience.

Our work this year has largely been with people who require the assistance of others, mostly family, to be directing their supports. We were thrilled to have raised funds which have allowed us to develop a terrific team and undertake our first Ally Project. We have continued to strengthen our partnership with Supported Living Network and its members, as well meeting and working with families in a number of other forums.

In this last piece for 2013 I would like to reflect on the key issues of significance emerging from our work and what we find has been of assistance to people on the path of self-direction.

People’s great ideas require noticing and safeguarding for innovation to be replicated

Often people have no shortage of fabulous ideas and the energy and tenacity to try, fail and try again. They have found a freedom, a satisfaction in directing their supports and funding. They are finding a release and the ability to work on things they have been thinking about for some time but haven’t had the opportunity to do because of the traditional disability service system.

We have found that there is great deal of worth in helping people reflect on their successes and the enormous achievements they are making.

In reflecting with people, we can also be of practical use through recording systems or ways of doing things that are working for them. Through this we find people more easily notice things that they can replicate and discard things that aren’t working. For example, many people are developing very interesting ways of recruiting paid supporters. Simply listening and recording what people have done and offering perspective (eg “It sounds like you have most success using a local networking approach to recruiting.” “That’s right, I do!”) is extremely helpful.

Validating people’s efforts, simply put, helps people to keep going.

It is also vital that people connect with each other and investing in peer-support is a crucial piece of the puzzle.

While many people have great ideas this sometimes masks that they may be experiencing challenges. They look super confident and super productive to the outside world. Of course people are productive. But every person is still on their own path with its challenges and its ups and downs.

With families who are doing a lot of the imagining and thinking with their family member, they can still be blocked by the same things that block society in general; for example, low expectations, not having a sense of what is possible beyond current experience, having past negative experiences that make us risk averse, and trying to work things so that we can get on with our own lives. This means that we too might only be making choices within the perspective or experience we know.

‘Choice’ is a word so bandied about. We have found it very helpful to find ways of working with people that develop trust. When trust is present, it is possible to ask questions and have conversations in which people can start to see choices that they didn’t think were once possible. People must be exposed and experience other peer leaders who are doing things they might not have imagined possible.

Where once services did all (or nothing)

We’ve been very used to a system in which professionals and service providers have been invested as the ‘solution-makers’. This model has rendered invisible the social innovation capacity of people with disability to develop their own solutions as it generates a ‘solution-receiver’ role which is largely passive. The search for solutions outside oneself means that services end up (both if you can get a service and also if you can’t get a service) playing a big role in people’s lives.

I invite you to think for a moment about how you become known to others. How do you form relationships? We meet people throughout our life as we venture forth. School, work, university, travel, leisure, community involvement, political and religious interests. Whatever. Think of all the places and ways we meet people. Some who stick; moving from acquaintance to friend, some becoming a best friend, a girlfriend or boyfriend, perhaps a partner.

Imagine them like circles around you[1]. Those closest to you in an inner circle. Those who are more like colleagues and acquaintances in a more distant circle. The services you connect with on the outer circle. These web of relationships provide us with strength, identity, improved mental health, fun, belonging, assistance and all those other thoroughly researched and documented things we know relationships provide.

The life experiences of many people with disability and their families can be quite different.  People may be more visible in our communities that at any other time in our history, but too few remain truly known. Isolation is still a common experience. There are many possible reasons for this. But what it results in is often a more fragile or smaller web of relationships.

As you become isolated you may rely on ‘the system’ more. That same system that is invested with ‘having all the answers’. Additionally it is a highly changeable system where people come and go from their jobs, where Departments re-shuffle, where funding and eligibility for programs waxes and wanes. Where the quality of what you get depends highly upon the values, skills and experience of the person at the other end of the line (regardless of how much training they receive).

So now we have an image of quite fragile networks and friendships around people, and a service layer that is also compromised (but heavily invested in).

Building supportive relationships is crucial for sustainability of self-directed supports

In NSW the ability to ‘self manage’ funding in certain program areas has, for some time now, offered people something incredibly important. The opportunity to describe goals and needs in your own terms, define the solutions to meet these and to direct the use of resources to achieve them.

This is a hugely innovative force. People’s ideas and solutions have leapt forth. People’s capacity to create, sublime.

Service providers supporting people to self-manage are now ‘stepping back’.

So what happens when we are choosing this path but still in a context of fragile, emergent or perhaps even very few relationships?

This is a big question for the sustainability of a self-directed experience. All that energy, creativity, drive, innovation and liberation needs to be sustained.

The ups and downs in all of our lives are sustained through relationship. All of us need others who hold our life vision and support us achieve it into the longer term.  This is a key aspect we would use to describe friendship, and certainly partnership/marriage, I am sure.

Heart and head learning

We are finding that people are benefiting from input, not just with the technical aspects of self-management but also with the stuff of building relationships for a long lasting and ultimately liberating experience that self-direction is aimed to be.  This is both the case for developing robust informal supports as well as paid supports.

Once you have recruited support workers, for example, how to do you engage them in your vision, support them and develop depth in them so that it is a relationship that bears fruit?

Informal relationships can’t be built overnight.  And we can’t just assume that ‘community’ is now going to take up the space where services have been. The historical experience of segregation and congregation has meant that our communities are largely unused to, and inexperienced in, including and involving people. Yep, there are many people who are just plain a^&holes. But there are also those who are interested when approached but extremely tentative. They don’t know what to do.  But they might do something if given some assistance.

So there is also a genuine role here for some bridge-building assistance. We find it takes understanding the needs and desires of both parties to achieve a well-supported inclusive community experience.

Key steps have emerged through our work. Building a strong foundation entails clarity of vision by and with the person with disability. It also entails discerning the ideal roles parents and engaged siblings in the support system (and so gaining clarity on what other roles would be of assistance if we don’t want to do them), achieving balance across a range of relationships and building mutuality and reciprocity.

When we talk about stepping out, asking, inviting and connecting, this can be emotionally tricky work. Our fears are present. We might have attended many seminars and intellectually know what the pieces of the relationship-puzzle are, but actually taking that step is a totally different matter.

We have found a couple of things helpful here. Firstly our work has focussed on action-learning from the heart and the gut, and not only the technical skills needed for self-direction. These are adaptive learning skills.

Secondly assisting people to imagine and develop  ‘community engagement’ style roles. These are roles assisting people establish greater links into their community, and build and strengthen relationships with people beyond family. We know the NSW has funded the Ability Links roles in the Hunter as part of the National Disability Insurance Scheme launch. It has said that it will roll out these positions across the state by July 1 2014. The success of roles like these depends upon a lot of factors. We are interested in supporting grass-roots community engagement initiatives with roles developed and governed by people themselves as much as possible. Our work with Supported Living Network shows that the work of community engagement can be highly nuanced and sometimes needs micro-community level work to even establish one successful role in community for a person with disability. This work simply cannot be done without knowing people well and with large case-loads.

So we are developing ways for more people to benefit from independent, grassroots community engagement roles in 2014.

Today is International Day of People with Disability.

I tossed around whether to write something for it.

I felt uncomfortable because part of me agrees with the critics – is it a celebration of false community; a smiley-face-party-hat-of-froth overlaying deep inequality? This especially stands out for me when I see the functions created by service providers for their ‘clients’ and know the deep lack of power and decision-making that is likely to characterise their relationship with that provider. Part of me squirms wondering if some of these people might be subject to the kind of violence, bullying and abuse that so easily flows in situations where people are vulnerable and power is concentrated. Take the recent case of the worker at Yooralla service in Victoria.

But today has been the catalyst to some reflections and I decided to share them.

IDPwD has made me reflect on all the people with disabilities I know, love, care about, had the opportunity to work with and am associates of. And I do want to celebrate them. Not as inspiration porn or as some ‘object’ of my learning. Not as some false community. We have congregated and segregated people with disability for centuries and a day like today can indeed serve as a way of yet again, bringing people together (literally or figuratively) in a bubble of non-togetherness. I always remember thinking as a kid that the other people my brother lived with in his group home were more different from each other than the same. Matthew always gravitated to certain people and they generally weren’t those he was deemed by others to have something in common with.

No, when I think of these people I see them in my mind’s-eye making their way in life – with all its concomitant joys and ‘I hate-the-world’ periods. Making their way in life through their own local, political, work-related, family, interest-related, religious and (insert your own title here) communities and sub-cultures.

And when I do that, it gets me excited.

Don’t get me wrong. I see everyone I know struggle, feel so frustrated and experience multiple personal rejection. It regularly flattens me. But I have also had the great privilege through these treasured relationships to see what happens in worlds when people with disability are genuinely present. Those worlds change. So through my relationships I have been able to see a world changed. And that is what I want to celebrate. Thank you one and all.

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’.  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 all of John’s inner-ness”.

I know the smell of institutions. I smelled it first when I was 7 years old. I don’t want anyone else to know that smell. All the so-called solutions above smell like that to me. A mixture of urine, wipe-down-plastic-furniture and industrial cleaner. They smell of distance and rejection and exclusion. We’re plagued by the notion that building things and creating more services is the solution to the life needs of people.

So I find I have more in common with anyone keen on building a truly-inclusive world. For starters they are a far sexier bunch.

I saw this meme on Facebook recently. It reads “We blame society but we are society.”

Interesting. We can’t expect the world to be more welcoming and inclusive if we are not doing the same. We can’t say society doesn’t accept people as they are while we continue to build segregation. Sometimes I am categorised as part of the community of carers, family members, siblings. But I don’t necessarily consider myself totally part of those communities. I know why many parents seem intent on re-building institutions. I FEEL why they do it. But by doing it we re-create the very world we long would change.

Now I don’t want to go all soppy on you, and I know I said something about inspiration porn, but building a truly-inclusive world, that is a real hard place to be. That is where heartache lies because of course there are many a*^holes in the world and because you still can’t even get in the door most of the time. And because pretty much all the resources are still locked-up in congregated and segregated solutions. They are really up against it. So to choose something different is a very vulnerable and often tiresome place to be. And therefore I think it takes extraordinary courage.  Because if it’s the riskier place to be, with possibly much personal cost, then those people I know, love and care about, have to decided to be in that place anyway.

And I want to thank every one of you on this day.

When I first moved to the Blue Mountains I got inspired to look into the Quakers. A certain spiritual curiosity and searching was my initial spark. Their peace work interested me. They seemed to have quite a community going. Indeed I discovered their work was interesting and the people associated with it. It was a deliberately quiet space. People seemed to be who they were. There was no need to be super competent or outgoing.

Over a cup of coffee one day after meeting I met Jasmyn who was getting her garden going. I said I wanted to get a garden going but was unsure. She said ‘you have to contact Josie. She has helped me so much with my garden.’ I left it a bit….one day I rang Josie. Sure enough Josie ran a business where she gardened alongside people. She didn’t just come and do the work and leave. Together we created a vision and then she was there beside me helping it come to life!

Josie knows lots of people. I invited her to my birthday and other things too. Recently she invited us to Katie’s house. Katie runs another business buying local produce direct and then making group meals, like a pop-up restaurant in her own home. The room was full of wonderful people, eating wonderful food including another Canadian Australian couple like us. I solidified my desire to keep my garden going. I’ve tried to think of people I know who would be interested and invite them along too.

This story is not at all extraordinary. But it is illustrative of the natural ways that we make new connections. It starts from mutual interest and it branches from there. It can happen in person or in cyber-space. I have many online connections I am yet to meet. Many of us are perhaps lucky enough not to even really think about it – it just happens.

These are the kinds of pathways and connections that make a difference in everyone’s lives. The means can differ, but I believe everyone wants to connect. They might not articulate it consciously or verbally, but people articulate it through their health, their body, their actions, their energy. The way connection happens is individual and there is not some check-list of success to aspire to.

Self-directed funding, self-directed supports like the National Disability Insurance Scheme afford us the opportunity to invest in the things that matter, rather than building more of the same. We can absolutely use resources to create opportunities and pathways with people, develop fertile ground, and undertake nuanced, supportive work alongside people in finding and building their tribe.