There’s been some controversy about these conferences – mainly because the cost is exorbitant. After discussing this we decided to speak because we had been invited and without which, we felt, there would be a lot of service providers talking to each other.

We took the approach that ‘complexities’ depend entirely on perspective. The complexities of self direction when viewed from an organisational and bureaucratic stance look very different from working in the organic complexity of a life trying to be well lived. This kind of complexity is best worked through in great relationship and partnership rather than through developing systems.

So more than case-studies (I hate the approach of the ‘consumer case study’), we decided there was really a lot of experience – long term, medium term and new- between us of real assistance for services starting out on this path or trying to figure it out.

What is some of this value?

• We know what we value about the self-directed experience – from trials, failures and successes we have a strong sense of what works.
• We know what is very important that we maintain high levels of decision-making and influence over.
• We know where we really appreciate assistance and what we value from a partnership with any assistive organisations.
• We have tried, experimented, failed and had success in many different areas over a significant period of time.
• We have seen the long term benefits of innovations like a home of one’s own, home-sharing, employment roles and student roles for people with significant disability.

So no need to go on study tours folks! Just talk to those with experience in your own back yard.

We began with three key messages from our personal stories

Cath: When we share authority and we each have roles that are complementary and helpful, people can develop and sustain truly innovative and responsive supports.

Linda: People need supportive infrastructure to enable solutions to become reality

Libby: Seeing is not believing. We need to see beyond people’s current contexts. We need to believe in better. We need to ask new questions.

We then asked each other some questions and had a great old conversation

When it comes to say-so over supports what do you definitely want to have authority over?

The 3 key things that we have always maintained are our non-negotiables.

1. To decide the ‘who’. That is, we have chosen and we know exactly who is knocking on our front door each morning. We have discovered talent and freedom in this area.
2. To decide lifestyle. This means how we live, where we live and what we do with our life and so how support should best be directed to achieve that.
3. To decide the ‘when’ of support.

Tell us the 3 most important elements to your partnerships with service providers

The 3 elements that we think stand the test of time:

1. We have maintained our authority over those things mentioned previously although we might ourselves delegate to others – eg paid staff.
2. We act in mutual accountability towards each other. So the other element that has been essential is a kind of negotiation process at the beginning and ongoing. What roles do we want? What roles would be helpful from the service provider? Once we know those roles – and they aren’t prescribed – how do we need to organise the relationship?
3. Flexibility and recognition of each other’s competencies.

Approaching things this way builds trust.

Tells us 2 key the innovations and creative solutions that have made a difference in Jacob’s and Matthew’s lives?

Housemates without disability.
Matthew has lived this way since he moved. The innovation of this is 2 fold:

• His level of disability – belief that people can live with a person who doesn’t speak and has significant disability
• We didn’t know anyone. Didn’t have a network. Yet we went ahead with it anyway.

For both individuals – Micro-business:

• Again, level of disability and belief this was possible.
• Build business based upon assets, interests and capacity. Innovation is the move away from deficit-based thinking and need-based thinking.

Lastly – being a tertiary student. Being a student at university and/or TAFE has opened up a whole new world.

None of these ideas came out of our own experience. So the other important point here is that they came from trusted sources. When you have trust you can challenge people to think beyond their barriers and present experience.

Mistakes along the way?

Yes we have.

For example, we’ve made mistakes in choosing support staff.
We’ve made mistakes in building good relationships with staff
Making some mistakes helped us hone our process.

What’s absolutely brilliant about making mistakes in a trusted environment is a sense of control over what to do about it. Going through it can be upsetting and stressful but it is actually wonderful to be in a position with the power to act.

One of the worst aspects of being in traditional services was this feeling of being totally powerless to influence what should happen, to be so dependent on the service to do the right thing but to often see that many agendas were at play.

Can service providers be innovative?

We don’t think innovation is the sole domain of any one party over another.

But we do think innovation is most likely to come from people closest to the problem.

However, what happens for people and families is that they live in systems where others are traditionally given the role of problem-solver. So firstly they regularly dwell in problems and secondly they regularly give over their power to others in the belief that those others are the ones who will create the solutions. Or they dwell in waiting – waiting for the individualised funding package, waiting for the next service. When people are waiting they are largely passive.

So it’s a picture of a kind of negative, passive, complaining role.

Because of this we think there is a very helpful role to assist people move from what is not happening, what the problems are, to what would make a difference to those problems. This is great assistance to get to innovation. It is also very helpful component of that role to be talking to someone who has a really good sense of what others have done to solve that problem – pointing the person and family in the direction of a vision.

I recently spoke at a conference called “Managing the Complexities of Self Directed Supports” (more on those ‘complexities’ in my next article).

The audience was largely service providers and so I was super-keen to get them thinking about the potential of their influence in supporting people with self-direction.

One of the strongest messages from my family’s experiences is to encourage service providers and professionals to SEE BEYOND and ASK NEW QUESTIONS in order that increasing numbers can grasp the opportunity of self direction.

Our self-directed journey began about 20 years ago with what I see in hindsight now was the beginning of a family conversation about what was wrong in my brother’s life and situation. From what was wrong, with the help of others, we worked out what could be right. NOTE – THAT’S ‘WITH THE HELP OF OTHERS’.

My brother moved from our family home into a large hostel when he was 9 years old. He lived in this hostel and then group homes until he was 26 when he moved into his own home.

His life now is very different. Not just his life but actually his identity, how he sees himself and how we and the world see him. Through changing his circumstances and through being able to work on the areas of his life that we deemed most important to his well-being, we have quite successfully enabled him. We have not done it alone.

When Matthew was living away from us, we might only see him on weekends and some holidays. His weekly life was not something I really knew much about nor had any real involvement in. As a teenager and into my early adulthood I remember starting to form some opinions about this. I remember yearly processes of being asked questions about Matthew but they always seemed to be the same questions and rarely do I remember us being asked to create this process or contribute to it. Sometimes people would come who knew nothing about Matthew and we would spend most of the meeting saying how we didn’t think their ideas would work.  Sometimes we didn’t participate I think because we couldn’t really see anything changing from year to year.  I remember thinking I’d just love him as much as I could when I saw him and hopefully that would be enough to last him.

It’s true that my mother was and is a leader in the advocacy movement. But isn’t that interesting? It can be quite a different story to take a leap forward into the unknown of your own life (even when the known is completely unsatisfactory and perhaps even abusive). It is also really hard to know what to do differently and HOW to do it.

So I think SEEING CANNOT BE BELIEVING. The contexts that we see people in can drive our perceptions of what they are capable of achieving. This was both the case for Matthew and for us. I know now that you could have thought us a number of things: an uninterested family, or a distant family, a family who didn’t have the goods, and therefore a family who might be incapable of  figuring out what was needed and then creating the means to achieve that.

It turns out we are and were none of those things.

The skills needed are

1. SEEING BEYOND PEOPLE’S CURRENT CIRCUMSTANCES

2. BELIEVING IN BETTER (even if they are struggling with this)

3. ASKING NEW QUESTIONS.