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The Life That We Take For Granted

Professor Peter Beresford and Colin Slasberg assess Labour's plans for a new independent living service

The plan to create a National Care Service, as unveiled at Labour's conference last month, aims to create a system of ‘person-centred support' underpinned by the principles of ethical care and independent living’. Labour have pledged to commit several billions of pounds to make it work. However, if they are to avoid spending a great deal of money which serves only to extend to a greater number of people what will remain a third rate service, there are three huge bear traps they must avoid. And it's not just about money.

The first is what do we mean by independent living. The concept has a noble history, originating some 40 years ago from the disabled peoples’ movement. It is now enshrined in the United Nations Convention on the Rights of Disabled People. It broadly means people being able to live their lives on the same terms as others, making the same choices as others. It can mean major life changing issues such as contributing one’s talents to society, or it can mean fundamental matters such as going to bed at a time of one’s choosing, rather than at tea time to suit the system’s convenience.

The Lords Independent Living Strategy group sum independent living up as "the life that most of us take for granted". But the term has been purloined by the current system to mean something very different and quite ignoble. It has come to mean simply being without support.

It has provided a smokescreen for cuts. We must be very clear that independent living is the United Nations version - and that becomes the driving ambition for the system.

Second, a progressive government would need to make free personal care the ‘foundation’ of the service.

Everyone will welcome cutting back the means testing, but a focus on personal care would be a serious mistake. Personal care is but one aspect of independent living. Not only are there all the practical challenges, but also the social, cultural, vocational and emotional issues that make life worth living. We are not narrowly defined by our bodily functions.

Third, is the belief that social care can be reduced to a specified range of ‘eligible’ needs as the route to reconciling fairness and control of spending. It’s simply untrue. It has given us a post code lottery of shocking proportions. The highest spending councils spend nearly double per service user than the lowest whilst all maintain the pretence of meeting the same range of ‘eligible’ needs.

The need for social care arises from the complex interplay of a wide range of factors that make them unique to each person. Similarly, the cost of meeting those needs varies hugely. Two people with identical impairments of mind or body could require completely different levels of publicly funded support. Each individual is best placed to understand their own situation. The system must be free to build on that individuality.

Needs testing must go. Eligibility of need must be replaced with affordability of need as the means to reconcile fairness and control of spending. This will put social care on the same footing as the NHS, where the gap between needs and resources is measured by the size of the waiting list. The social care equivalent will be the scale of needs not met. With that will come political pressure to close the gap.

Labour’s conference also voted in favour of a proposed National Independent Living Service put forward by disabled activists. It is a radical alternative to the National Care Service. It would create a legal right to all the support required for independent living. It would mean flying over the bear traps without having to negotiate them. It would be the perfect solution. But whether Labour goes on to adopt the idea in its manifesto is another matter. It is not possible to cost it, and the unpredictability of the cost of needs for independent living means a right to them could not be delivered within a budget. It would need to be funded on an open cheque basis.

If securing independent living is too much in one leap, addressing the above three issues will create the essential stepping stone without which we will remain trapped in the prevailing culture. It would also make it possible to deliver on the United Nations principle to ‘progressively realise’ the level of resource to enable all to experience independent living.

Independent living must be our destination even if we cannot get there in one step.