Personalisation was supposed to empower vulnerable citizens. It failed.

Self-directed support should have improved adult social care, but the movement I founded became the new bureaucracy 

One of the big ideas that is at the heart of reforming health and social care is personalisation. At its simplest this means moving away from standardised services, towards a flexible system where people have more control and play a bigger part in their community. It can also be more efficient, as people create solutions built around their own lives.

These ideas have been a big part of my life. Since 1990 I have been working on self-directed support, a system to give disabled people, especially people with learning disabilities, more control over their support, without having to employ staff or manage cash. This includes the concept of a personal budget, where people are told their entitlement up-front, so they can decide how to manage and spend it.

 Between 2003 to 2009 I ran In Control and developed these ideas in England. At the beginning some local government leaders found these ideas really exciting and we worked together to test and implement them. In some areas, like Barnsley, there has been a concerted effort to implement these ideas carefully and intelligently. Today personal budgets are the norm and there are few big services left to commission. The focus is shifting to strengthening citizenship and local community action.

But other places have found these same ideas very challenging. From 2007, when central government made personalisation mandatory, progress has been patchy and in some places things seem to be getting worse, not better. Personally I found the whole process very frustrating and so I left In Control in 2009 in order to work more independently of government. In particular there have been three negative reactions to personalisation.

Some have effectively rejected it. For instance, one lady told me of how she and her husband (who had a severe stroke and was physically disabled) were “given a personal budget”. They were asked some questions, told their budget and then told that they would be getting the cash directly and should find help by putting an advert in the local newsagents. No effort was made to help them think through their options or to provide proper assistance. Here personalisation has become an excuse for abandonment.

Others do embrace personalisation, but in a way that is confused and poorly thought-through. Social workers rightly complain that they must complete new forms, on top of the old ones. Citizens are told their budget, but then encouraged to let the local authority “manage it”. Complex systems of support planning, panels and monitoring are put in place. Here personalisation has become the new bureaucracy.

 Some just see personalisation as a tool for cutting budgets. Social care is in the midst of a 33% cut in funding from central government, so it is not surprising that every effort is made to reduce spending on individuals. For instance Nadia, one of the Centre’s fellows, who has complex impairments, but is a very active citizen, has been put through a “resource allocation system” that seems quite insensitive to the reality of her needs. Here personalisation has become an excuse to cut costs.

 Local leaders will need to take stock. The idea of creating a new alliance with local citizens, building solutions together and moving away from institutional services will not go away. But there will need to be a stronger focus on people’s rights and many of the current bureaucratic systems will need to be dismantled. In the face of increasing centralisation, local government must learn to stand up for itself and for its citizens. This is a challenge local government can meet – they have before – and they can again.

Source: Simon Duffy 01.30.2014


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