I don’t mind saying that Catherine Mahony, Linda Hughes (both from Mind-the-Gap and Community Disability Alliance Hunter) and I rocked the joint at the recent Managing Complexities of Self Directed Approaches conference in Sydney.

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.