I sometimes think everyone who talks about personalisation should have the experience of working with deafblind people. It throws up healthy challenges to the way we work that have something to offer the debate around the future of personalisation. It can be a real test of your commitment to putting the person at the centre of what you do, of making no assumptions of what will and won’t work, of listening to what is wanted (and what is not).
When your two distance senses are impaired, the world and the way you interact with it changes. To design a team away day that will be accessible to people accessing information through both interpreters and computer Braille display without slowing things down so much that it becomes difficult to engage is a challenge. It means ditching all your ideas about how to work with groups – out of the window go flipcharts, post it notes, and a raft of other inaccessible activity. Welcome to group feedback by email (technology is essential in this).
At its core, personalisation is about giving people control. So the first question is: control of what? There remains a lot of talk about managed budgets being somehow less personalised than direct payments. Yet for people who face challenges with access to information and communication, choosing to have someone else deal with the finances can be a sensible way to keep control of the parts of life that matter. Add to this the fact that a Braille user may have to negotiate a minefield around accessibility – do you want your bank statements in Braille so that you can read them, or print, so that the direct payments team can read them?
And of course, having control of your budget isn’t an automatic passport to control over your support. If it was, all self-funders would be purchasing excellent support. But self-funders suffer from both lack of information and lack of appropriate services. The Care Bill addresses both information and market shaping, but these need to be delivered in a way that is suitable for people with a sensory loss.
It’s great to see the increasing focus on market shaping – making sure there is actually something there to spend your budget on. There’s a lot of focus on variety and choice of providers, on micro companies and social enterprise. For sensory impaired people, the debate may be different – suitably specialist support may be higher up the agenda than the exact type of provider, especially for those with very complex communication support needs.
When it comes to evaluating impact it is clear that personal budgets make a huge difference for a large number of people. But who are those minority where it doesn’t and why?
When it comes to looking at the future of personalisation I think we could do worse than look honestly at where it’s not working and what we can do to address this. That will mean delving below the statistics: which are the groups and individuals who are not benefitting? My guess is there will be a fair few people with a sensory loss in that group. But addressing the groups where personalisation is currently failing is what will challenge us to think more laterally, to really listen to people without preconceptions and in so doing, to become more skilled at personalised approaches – for everyone.
