What are the elements that make for good ethical partnerships between families and services?

We haven’t been partners

Families have been very used to a system in which professionals and service providers have been invested in 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.

In addition, historically people receiving services have, by-and-large, been offered fixed models of care and support. This means that services are largely created before people arrive on the scene. This results in a ‘one size fits all’ approach. Such a system is not able to provide what a person needs to maximise the potential of their life. Maximising a person’s potential is predicated on a personalised system, where support can be designed with people, ‘one person at a time’.

What does truly personalised support demand?

Creating personalised solutions means people with disability will move from being passive recipients of ‘one size fits all’ care to ‘partners’, ‘creators’ and ‘drivers’ of solutions. To grasp this opportunity they will need to become engaged in the design and delivery of their own support arrangements, and become equipped to choose and direct the services they receive.

The beauty of the possibility of the National Disability Insurance Scheme (NDIS) is that those who choose to self-manage their funds may not even need to use a traditional service to provide what is outlined in their plan. This possibility needs wide-scale promotion.

We also know, however, that larger numbers of people still continue to rely on disability services. Given this, what are the elements of a genuinely helpful partnership between a person and a service?

A story to start with

My brother received a support package, moved out of a group home and into his own home in 1996. At that time we partnered with a local service with experience in devolution and supporting people in their own homes^[1].  In 2005 however, we found ourselves in a collapsed relationship with this service. Ultimately it became nasty. It rendered my brother effectively homeless for about a year. It was long and arduous, but ultimately we decided to seek a new provider and a new relationship (NB this demonstrates the importance of portability of funding).

And so this was the context in which we were about to meet the key ‘implementation person’ of another service. We already had a positive response from the CEO and now the next step was to meet the person who could help make it happen.

The meeting was arranged at my brother’s home. Big tick already. I remember we had a meal together. Another big tick. She got up and did the washing up! Yes, we stood and had a conversation about our experience, my brother’s needs, getting to know us as the washing up happened, and it was no artfulness on her part!

A sound basis for good partnership

There are many subsequent stories to tell about this woman, but all of them have a common thread of ‘stick-with-it-ness’. She aligned herself wholly with the interests of my brother and of doing her all to make things work for him. Consequently she stuck with the ups and downs of his life and getting his supports the best they could be. She still remains very connected to my brother eight years later, in friendship and guidance.

“Lucky you” you might say. The point of this story is NOT ‘if or when you find a good person, then you should go with that service’. Of course that is too random, and good people come and go too, so no, this is not a sound basis for partnership.

Rather, through this story and this relationship we can extract many things that ARE the basis of good partnership:

• ‘submissive posture’ – the onus is on me to build trust, openness, questioning, curiosity
• recognition of where people have come from and therefore what mindset they may have
• equality of relationship
• commitment to the person
• ability to effectively and repeatedly problem-solve

I summarise our relationship as: The road ahead is unknown. Quite probably lots of mistakes will be made. We can’t say what it will look like from our end. We want to say that we’ll make a commitment to you to work it out as we go.

An A-side and a B-side make a record!

Yes back in the dreaded past, there were magical things called records (check it out on Wikipedia if you don’t believe me)! A record has an A-side and a B-side. You flipped a record over, played the other side and together they made beautiful music!

Michael Kendrick explains partnership through an A and B dialogue. It was revelatory when I first heard it and made me immediately think of this record analogy. An A side and a B side are two sides of the one thing.

Actually going to Wikipedia isn’t a bad idea, because you get to read things like this, “The A-side usually featured the recording that the artist, record producer, or the record company intended to receive the initial promotional effort and then receive radio airplay, hopefully, to become a hit record. The B-side (or “flip-side”) is a secondary recording that has a history of its own.”

So you see, they are two sides of the one thing, but they both have different roles. This is the beauty of a genuine partnership. It is an alliance that benefits both because each is providing something the other doesn’t have or doesn’t want to have. In the business world, for example, good partnerships help each party go further. “I’ve got a great product. You’ve got access to a large market. Let’s make business love!” In fact there is a whole area of business theory that says partnerships are the real key to success.

Of course in our context we are talking about an historical power imbalance between the parties. We also need to take into account that relationship is not purely transactional (although I would argue that even in the business world relationships are not just transactional). Despite this, however, I think this framework gives us a very good starting point.

Adopting a mindset of “our presence will benefit this organisation”, not just this organisation will benefit us and thinking through those benefits changes the conversation. In other words don’t go in as the “underdog”. I remember even in 2005, we treated this as partnership building. When seeking a service we discussed and proposed my brother’s needs and our values, in order to find a good match. It has worked well for us and is an approach I have supported other families to use, with good results. It often results in very exciting, very relevant, living service agreements (happy to share some examples if you contact me).

This kind of approach isn’t only successful if you have a funding package. I know people who were only eligible for support that came through block funding, but managed to negotiate the personalisation of those resources through this kind of approach. For many years my brother accessed a day service that was block funded. He is too old to have been eligible for the individualised day program funding now available in NSW. My mother, ever sharp as a tack, realised the moment when his day service was to be moved to a non-government provider it could be seen as an opportunity. So we used this approach to negotiate a more individualised approach. This was the catalyst for him to leave the day program and do more interesting things with his life, like start a small business!

I’m a big believer in vision, mindset and thinking outside the box FIRST. Make the money follow and support that rather than starting with the money!

A-side

As families, we often think only about ‘what the service should be doing’. But what are our roles and responsibilities in creating an ethical partnership?

As I have eluded to, we have found it very helpful to approach service providers in the same way we interview/recruit for support workers – looking for a good match.

Take some time to develop what you need.  I know this can be difficult but it is worth the investment.  Think of it like a proposal – “hey, we are looking to do X, Y and Z. We could really use some help with A ,B, C to make that happen. What do you say to that”?  Think about what you don’t think already exists in you, your family, networks, community, and use these gaps to identify possible provider roles.

The conversations never quite go as linear as the above but it avoids the approach of ‘let’s hear what they can do and choose the least worst option’. You want to hear what a service can do, but in relation to what you need. Otherwise what you tend to get is a service menu. And often you can negotiate something new that the service didn’t have on its menu because you have articulated excitement, innovation and benefit.

Triple win thinking is so powerful here. A powerful proposition articulates:

What is the benefit to the person?

What is the benefit to the family?

What is the benefit to the service?

What’s in it for all these parties? When you are talking from this perspective you are inviting someone to join your big vision.

As families we have a responsibility too to build the relationship. If we want control and decision-making in particular areas, we must commit to the responsibilities this entails. This might mean we need to learn some things and spend time understanding them more. This doesn’t mean we have to do this alone – indeed perhaps this is what you need assistance from a provider to do. For example, I’ve been in some great meetings between providers and families who want control over recruitment, induction and supervision of support workers. Meetings where information was shared to create reasonable OHS checks, simple reporting procedures and understanding responsibilities under the relevant employment award.  If we want this control then it is also our responsibility to employ people legally and pay them fairly. We need to thank, and acknowledge where things have been very helpful. It’s a truism – but in the lead-up to the NDIS, there is no better time to be letting a provider know about the things that really work and are really helpful! After all, this is what we want more of.

B-side

There is much to be said about what would be helpful from the service provider side, given the historical power imbalances in this area^[2].

I want to focus on 3 things that can really assist families as part of an ethical partnership. They all focus on helping families address adaptive barriers to change. This is a capacity-building agenda. If we have a situation where services are simply saying “we’ll just do what the family wants because that’s empowerment”, this is not always helpful in terms of the goal of developing life-giving opportunities for the person with disability. And after all, this should be the driving ethic of both service provision AND family-governance.

Firstly, families themselves are not immune to being 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 them risk averse, and trying to work things so that they can get on with their own lives (which might mean the person with disability is not always placed first). This means that families too might only be making choices within the perspective or experience they know.

‘Choice’ is a word bandied about a lot. It is 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. Services can assist families by exposing them to peer leaders who are doing things they might not have imagined possible.

Secondly, when we are seeking to be the author of our own life, many things have the potential to derail 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.

Thirdly, if given time and a structure to ‘imagine better’, rather than simply focusing on what is not working, I find families have no shortage of fabulous ideas and often the energy and tenacity to try, fail and try again. Even very tired people!

People become hungry for ideas and strategy on how to make their vision happen. Services could provide this structure.

These could be fabulous assistive possibilities on the B-side, where a service takes an ethical stance ‘alongside’ (not ‘doing for’) people in their own efforts at change.

As we can see this doesn’t just involve saying “we’ll do whatever you want because it’s your choice”! An ethical partnership can involve gristle, challenge and breaking new ground.

For a range of awesome perspectives on this topic, click here for journal by Belonging Matters 

For a shorter version of this piece on the Every Australian Counts website click here