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Participation is all the rage. But how can we ensure it includes everyone?
Alex Fox, CEO Shared Lives Plus , 30 October, 2019

Residents of a Shared Lives house

Residents of a Shared Lives house

Large swathes of our increasingly online lives are given over to ‘having our say’. We leave reviews on TripAdvisor or Amazon. We use social media to harangue businesses which let us down. We sign online petitions and share our views with friends and online acquaintances. And yet people who are hyper-informed and connected in the social and commercial space can feel disconnected from the decisions and decision makers which shape their public services and societies. And this isolation is magnified when it comes to people who are already marginalised by society, such those living with a disability.

Perhaps this sense of detachment is one reason there is a growing global movement to involve people in the decisions which affect their lives and neighbourhoods. Approaches such as citizens’ assemblies and participatory budgeting, where a community is given control of how to spend the money allocated to their area, are not new, but they are resurgent.

Participatory democracy can be empowering, but that new power is not evenly distributed. Local forums can be captured by the most vocal groups; they can default to the lowest common denominator issues (everyone cares about the bins and pot holes, but only some people care about social care). Most perniciously, they can actively exclude the groups who are in most need of resources or who experience the most prejudice.

This is far removed from ‘co-production’ where people who use services are involved as equals. True co-production has long been fought for by disabled people , with the support of bodies such as Think Local, Act Personal (TLAP). But for now, coproduction is also now much talked about, but far from standard practice.

While participatory democracy is not always inclusive, coproduction can be limited in its focus – for example only asking disabled and older people to comment on services ‘for them’, rather than take part in wider decision-making. Achieving the equitable, collaborative community relationships – what the New Local Government Network (NLGN) calls the Community Paradigm – will require us to do both.

Here are two lessons I think could be learned from coproduction in social care, which could make devolving decision-making to communities more inclusive of the most marginalised groups, while enabling coproduction initiatives to have an impact beyond the public service world.

1. Consensus is overrated

Lessons from self-managing teams suggests that groups of people find it difficult to get majority decisions, particularly when the decision is around innovation. This can result in stasis or maintaining the status quo. Instead, self-managing teams use highly structured discussions in which members of the group consult widely, but can then make and take responsibility for decisions without achieving consensus. In the context of participative budgeting, you could identify clusters of consensus amongst sub-groups, and reflect these through a series of smaller decisions or budget allocations. This kind of process can only be done by people who want to work in that way and who have had the right support. Such decision-making forums would ask more of participants, but would also offer more support , particularly to those groups who might otherwise be re-marginalised.

2. Strong communities start at home

We often talk about community as if it is found ‘out there’, in public spaces, but the Shared Lives experience is that community can be built outwards from our close relationships. In Shared Lives, someone who needs significant support to live in the community, often because they have a learning disability or long-term health condition, is matched with a ‘Shared Lives carer ’. The individual may move in with their chosen Shared Lives carer and live as part of a supportive household, as an alternative to living in a care home or being stuck in hospital. Shared Lives is a regulated care service, but the Shared Lives carer doesn’t just provide personal care, they also involve their family and friends in helping the individual who has joined their household to build informal support networks.

So Shared Lives households are active in looking for new connections and activities for the people who live within them. Some go on to lead community activities, start new ones or even found social enterprises. Compare this with the experience of many under-supported families who are experiencing illness or disability, where unpaid family carers can find that their social connections, confidence and energy shrink. Families under this kind of strain can only look inwards for survival.

The challenge for those seeking to devolve democracy to communities is not merely to ‘be inclusive’ of disabled people and other excluded groups. It is to recognise that those people can be the building blocks of those communities, and that well-supported disabled people and carers can be among those most motivated and able to lead devolved decision making, as well as having the most need of a share in that newly-distributed power.

Alex Fox OBE is CEO of Shared Lives Plus, the national network for Shared Lives and Homeshare and author of ‘A new health and care system: escaping the invisible asylum’ (Policy Press).