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.

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.