By Simon Stevens
As a long-term service user, I have witnessed the rise of personalisation and now I believe I am witnessing its fall. The current generation of professionals have forgotten what personalisation is and there appears little effort to rescue it.
Direct payments were an early from of personalisation, and existed long before they were enshrined in law under the Community Care (Direct Payments) Act 1996 because they worked for everyone involved. They were desired by users and families because they were better than being dependent on services that could not meet their requirements. They worked for local authorities because they got trouble makers, those endlessly making complaints, off their backs and turned them into happy customers. This was demand led and accountability was a matter of trust in what was an ad hoc system.
As policy on personalisation evolved, personal budgets were first piloted around 2006. They were not born out of demand but rather ideology and a misplaced faith in resource allocation systems (RAS) by government ministers. Simon Duffy, the inventor of RAS, convinced ministers around this time that they were the answer to the future of social care. He offered a promise of delivering what users wanted and saving money, and a deal with the devil was sold.
‘Beginning of the end’
I am sure the idea of RAS works well when you are decommissioning block contracts for services like day care for people with learning difficulties, where the deliverables are soft and flexible, and replacing these services with individually assessed supported. Here the costs of providing the service can equally be provided to each user to do as they wish, minus the desired cost reduction. But imposing this on people who require personal care, where the room for flexibility is limited, was a big mistake and this was the beginning of the end for personalisation.
The heyday for personalisation for me was the individual budgets pilots in 2007. Coventry council was one of a few authorities that rejected using RAS in favour of measuring outcomes and providing fully costed support in co-produced assessments. For someone who received funding from my council (Coventry), Access to Work, and the Independent Living Fund (ILF), it enabled me to officially do what I was already doing. But the pilot quickly failed in terms of the cooperation of other funders. So individual budgets quickly become personal budgets, a costed support plan from your local authority that may or may not be provided as a direct payment.
The Care Act 2014 enshrined personal budgets in law and as something everyone now had, but it did not really change anything. Everyone blames austerity for the failure of personal budgets, but I believe the reasons are more complex. While direct payments were created out of demand from users and families, personal budgets were, and still are, driven by professionals. The personalisation lobby with organisations like In Control are still congratulating themselves on how politically correct they are and how personalisation still matters despite everyone else moving on.
I fear the real reason personalisation is dying is the same reason that long-term service users experience problems from time to time, and that is because the current generation of professionals have forgotten what personalisation is.”
National and local agendas have moved on and in an era of tight budgets, stricter monitoring of direct payments and personal budgets has appeared; for example, in the form of payment cards that limit how a user can spend their budget.
There has been no malice in these new regimes; they have simply had no lived experience of the benefits of personalisation. Service users are always the last people to be told about policy and culture changes in what remains an ad hoc system, and this is why I currently find myself holding a square peg and being asked to account for it by putting it in a round hole.
After 20 years operating a single package funded from a number of sources, my local authority is demanding I split it into separately funded packages (not even understanding I have a single package), splitting my main personal assistant in half! With no support available to manage this and no one in the council even understanding my package that they have agreed to, I am having to now re-educate my local authority on the basics of personalisation on top of trying to lead my own independent life.
Fight the system
So, personalisation is dying and there appears little effort to rescue it. The government is currently too busy dealing with the potential impact of Brexit on every aspect of British society to do anything else, and the rhetoric of a social care crisis is neatly playing to the benefit of organisations regaining control away from users, including the carers movement.
Corbyn’s Labour Party opposes anything that was created by New Labour, and sees personalisation as a part of the neoliberal regime they despise. Unlike Gordon Brown’s proposed National Care Service, Corbyn’s nationalisation of social care would likely reduce my quality of life to something comparable to living in a Communist-era Romanian orphanage as his sums fail to add up and cuts like we have never seen are made.
I write this article as I am potentially on the verge of losing my personalised support package for good unless I fight like cat and dog to rescue it, which I intend to do. But sadly, few users have the knowledge, experience or weaponry to fight the system and win, which is why it may not be long until I am the last user with a true personal budget standing.
Simon Stevens is an in independent disability and inclusion consultant with 25 years’ experience as a social care user and professional. @simonstevens74