The eminent thinker and activist John O’Brien wrote an article recently called Surviving Cogworld for www.ddnetworkinc.org, in which he talks about the rise of a mechanistic view of service provision in his home area of Wisconsin, reflections of which he sees globally. He identifies pressure on service finances and a merging of older people’s care and care for people with learning disabilities as the cause of the ‘cogworld story’ of how long term care should work: “People need long-term care because they are incapable of performing activities of daily living. Long term-care efficiently and cost-effectively performs the specific tasks that people have proved that they cannot. These tasks are specified in a plan that links objectively assessed incompetence to procedures that are well defined for efficient performance. Whenever possible long-term cate is delivered in a person’s family home, especially when family members and friends can provide unpaid assistance. As need becomes more intense people move into specialized settings: assisted living, group homes, nursing homes.”
This is the opposite of O’Brien’s vision of long term care which enables people to contribute to community life, control their own lives, secure good health and a stable home, work and earn an income and learn and grow.
The paper poses questions and O’Brien says, “I have no solution to the difficulties I identify other than the invitation to join in figuring out how to make progress in a troubled environment.” How to return to a model in which organisations invest in positive, mutually valued, long-term relationships between support workers and the people they support, which O’Brien identifies as the key to good care and good lives?
‘Cogworld’, in which people are seen as parts of a machine which just needs to be designed better and properly fuelled in order to work well, is an image that rings true in the UK as well as the US. O’Brien is surely right that the key to good support is the time, space and mutual respect needed to develop relationships. He quotes people talking about their support workers being like friends or family.
Where I differ from his analysis, and why I think there is an affordable solution, is in the assumption implicit in the article that for support we need support workers.
A support worker is:
- Recruited, vetted, trained and monitored
- Contracted to provide a tightly defined service, within professional and time boundaries
- Responsible for the person they support, not vice versa
- Usually told who to work with and discouraged from ‘favouritism’ and fostering ‘dependence’
- At work when they are with the person they support, not at home
- Paid by the hour
When people describe really great support it is often partly about the professionalism of the individual; their skills and expertise. But it is also about the worker’s ability and willingness to step slightly outside of their boundaries. To become more like friend or family, or to behave in such a way that supporter and supportee can suspend their disbelief and feel more like friends and family, if only until the shift ends. O’Brien is right that it is increasingly hard to achieve this in systems which are ever more risk-averse and less well resourced. Even a brilliant support worker is unlikely to be able to feel like friend or family in a 15 minute visit. But there is no feasible future in which support workers routinely have twice as much time and half as many clients. Some areas and organisations get closer than others, but demographics, demand and public finances are only going in one direction.
The familiar alternatives to paid and boundaried support work are unpaid and often boundless family care, and the work of volunteers. There have been numerous attempts to grow volunteering in health and social care, with varying success, but most of feel distinctly uneasy about the idea of unpaid volunteers providing significant and personal care. Meanwhile family carers continue to provide vast amounts of care and there is little reason to believe that families have the capacity and willingness to do significantly more than they already do.
There are things we can do to improve support services. We can pay for outcomes and life changes rather than tasks. We can organise support around people’s lives and family care. But to move away from cogworld towards a relational model of support, we need to take a fundamental look at the very idea of support work. If great support work feels like friendships and families, why not build a model of support which is based on friendship and family life? One approach to this would be to offer families who are willing and able to provide care (and where that care is also the choice of the individual receiving support) the resources which are currently only offered to services, even where services provide a poor simulacrum of family care.
Regular readers will not be too surprised to hear that I feel Shared Lives is another alternative. Shared Lives carers share the vetting, training, support and monitoring which support workers receive, although with more intensive recruitment and training in order that they may safely be less closely monitored and more autonomous. But in most of the other aspects bulleted above, they more closely resemble friend or family member than support worker. Their commitment has boundaries and a contract, but those boundaries are not time boundaries and they are not paid by the hour. They are free to form lifelong attachments in which both parties regard each other as friend and genuinely ‘just part of the family’. This arises partly because both parties have choice about who to work with, just as we choose our friends and the people with whom we form households. The Shared Lives carer is at home with the person they support, not at work (even though they may be working hard).
Hoping that volunteers will fill the increasing gaps between services is not realistic, nor is it desirable: it would lead to toxic risks for people who need support and the exploitation of a few individuals’ goodwill. But nor can we buy our way to care and support which results in good lives. Shared Lives demonstrates that care can be recompensed without being commodified. That risks can be taken as well as managed. And that well-supported households and families can work like clockwork, without turning into cogworld.
Escaping the invisible asylum 