Tricia Nicoll is a mum, daughter, survivor of the mental health system, co-convenor of the positive change movement Social Care Future and agitator for the Gloriously Ordinary Lives campaign. Here she shares her valuable insight around the role of people, places, and resources in person-centred care and support.
Disabled people started to fight for the right for what we now know as direct payments in the late 70s, challenging the notion that there should be a bunch of ‘expert’ people making decisions about what money should be spent on to meet the needs of another group of people who need to draw on care and support to live their everyday lives. In 1996 the Direct Payment Act made that law.
In 2003 we first tried out the idea of self-directed support – the crazy notion that if we told people how much money we spent on them, worked with them to think about what a good life looks like and, then using public money alongside support from family, friends and communities to help make sure that good life really happened. We have personalisation, person centred support and personal budgets. We have personal health budgets and we even have personal education budgets. In every bit of policy around social care now you’ll see the words ‘personalised care and support’ peppered liberally. Yet if you look at the majority of older and disabled people’s lives, you will see support organised in ways that are focused on time and task, outputs, box ticking, processes.
The Social Care Future vision is that, ‘We all want to live in the place we call home, with the people and things that we love, in communities where we look out for one another, doing the things that matter to us’. Key words there …home, people, love, communities, what matters. The words that most of us use when we think about our own lives and what makes them good.
My experience is that, as soon as people need support from social care to enable them to live in a place they call home, a strange parallel ‘Serviceland’ universe takes over. We talk about placements and caseloads, accessing the community and personal care. People’s lives are reduced to transactions, and we become service users being delivered support.
One of the reasons I started talking about Gloriously Ordinary Lives when my kids were teenagers was to try and stop the system reverting to this ‘Serviceland’ thinking and speaking. As a family we were clear that we wanted our kids to have the same experience and opportunity as their non-disabled peers; local school, guides/scouts, cinema club, swimming, hanging out with friends. What we were mainly offered was a set of services that looked very different and mainly involved not doing things with other local kids. When my Mum (who lived with me) needed more than low level support, the assumption was that she would, ‘go into care’ – she didn’t.
So, whilst there are undoubtably issues around budgets, on the way that social care is organised and on some of the daft things we do in the name of commissioning, I maintain the biggest thing that is getting in the way of people living in the place they call home and having Gloriously Ordinary Lives is our attitudes and expectations of what people’s lives should and could look like. The them and us of service user and service provider. The very fact that we hide behind words like personalisation (made up word by the way) rather than talking about good lives says it all.
So, I guess my challenge to all of you out there reading this who are part of organisations that offer support to people, is to start with Social Care Future Vision and the five tests for Gloriously Ordinary Lives ….oh and try asking people what a good life looks like to them. Do that and you won’t go far wrong.
@socfuture
socialcarefuture.org.uk
