Personalisation must always be the servant of independent living

By Neil Crowther

Independent living is not another word for social care or just about public services or benefits.  It is, as the phrase suggests, about the capacity to conduct ones life as one chooses – to be, as the title of this blog says ‘the author of ones own life.’  As a project it demands nothing short of societal transformation – re-directing legal, economic, political and social power to disabled people.  This requires legal and institutional reform, access to information and advice, the creation of infrastructure, technological innovation, accessibility of goods and services and changes in public opinion, attitudes and values.

‘Personalisation’ is an important part of this project, but it is only one means to its end.  It does not alone address or convey the breadth and complexity of what’s involved in promoting independent living.  Alone, it is too confined to the relationship between individuals and providers of services. Having choice and control over services does not necessarily equate to have choice and control over ones life, nor does the personalisation agenda clearly speak to the enormous growing gulf between those requiring support and those provided it by the State. Failing to connect ‘personalisation’ to ‘independent living’ is akin to divorcing the promotion of diversity from the pursuit of equality.  It simply loses context and direction.

My comments here are not designed to contribute to what Martin Routledge has called ‘the failure narrative’ regarding personalisation. Rather they seek to help find a way to rediscover what is (and is not) valuable about the way personalisation has or is being implemented and to avoid personalisation being positioned as a fig-leaf for further cuts. It is about rebooting the navigation system.   Without doing so we risk allowing personalisation to be cut free of its mooring as Jenny Morris recently warned, and placing ourselves in a position of defending the indefensible: the illusion of progress, or worse still regression under its banner.

Just as the floods are destroying the physical infrastructure – housing, roads, trainlines, bridges – that enable people to lead their lives, so the floodwaters of austerity are sweeping away the infrastructure – social security, public services, receptive public attitudes – that sustains independent living.

Though I stand by previous posts that austerity provides opportunities as well as threats, in practice such cuts are not only limiting the overall availability of support, they are undermining choice and control in relation to that support which continues to be funded.  I have spoken to disabled people who say that such is the challenge of securing any support from their local council that we will take whatever they can.   What people are expressing is their sense of powerlessness – of being ‘done to’ and of having no real say.  It is the stuff of Oliver Twist –  ‘please Sir may I have some more’ – with rationed support ‘gifted’ not provided as a right.  This is of course precisely what the idea of independent living – and personalisation as a means to that end – sets out to challenge and address. But the fact that austerity diminishes not only the availability of support, but the extent to which people are, or feel that they are, able to exert control also reminds us that real power can only be exercised where the overall resources committed to public service support are adequate.

Related to this, I have also heard disabled people and others express a view that choice and control is relevant only once basic needs are met.  I fear this perception may be borne of a misunderstanding regarding some of the examples – such as that of a couple using a direct payment to purchase a season ticket so that someone could support the disabled husband to go see his football team – that advocates of personalisation have employed to inspire others.  The solution in this case may be imaginative and wildly different from what people are used to, but it was simply addressing the very basic human need of the wife – caring full time for her husband – to have a rest.  Had they continued to achieve this by him attending a day centre one afternoon a week (something which he hated and which left his wife feeling racked with guilt) would anyone view this as a luxury?  

Moreover, control (or fear of losing control) is typically a high priority concern for people in respect of matters such as who comes in and out of their home, helps them to wash and go to the toilet, take medication, get dressed and undressed, handle their money and personal affairs, or determine what time to get up or to go to bed.  The reason people may accept a loss of control in relation to such ‘basic needs’ is that the consequences of their not being met are so dire.  It is the point at which people are in the most vulnerable situation and at their least powerful. This is also why personalisation at the level of basic needs has the greatest potential to restore power to disabled people.  As Maslow’s hierarchy of needs (below) reminds us, without control over these so called ‘basics’ other aspirations – such as a good family life, social relationships, employment and so on are frustrated or rendered impossible.  

Advocates of personalisation must therefore challenge spending cuts not only on grounds that too few people are receiving support, but equally because spending cuts are presently disempowering those who do, robbing them of even the most basic foundational forms of dignity and agency.

Most fundamentally of all, we must never forget that independent living is a right, not a luxury.  When the UK government, with cross Party support (and urgency) ratified the United Nations Convention on the Rights of Persons with Disabilities in 2009 – with the UK already deep in recession and public spending cuts forecast – it undertook, in good faith, to implement the Convention including Article 19 – living independently and being included in the community.  Article 19 demands that disabled people can exercise self-determination over where and with who they live and that they should enjoy inclusion and full participation in community life.  The government undertook to ensure conformity of all laws, policy and programmes and the ‘progressive realisation’ of the right – that is, securing over time, albeit in clear milestones, enjoyment of the right in practice through the dedication of resources.

For personalisation to regain credibility and be a force for good, it must be clearly restated that it is the servant of independent living, the impact of spending cuts must be highlighted and challenged, and the higher ground of Maslow’s hierarchy must once again be our mission.

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One thought on “Personalisation must always be the servant of independent living

  1. I agree strongly with this Neil as you know. Personalisation, done well, is one contributor to independent living and inclusion. One suggestion though, related to the line “for personalisation to regain credibility…” I think there is a high risk currently of personalisation being seen simply as a government policy being “implemented”. I’d suggest rather that we are careful to encourage a view of personalisation as a set of approaches via which public services can change in ways that mean people can take greater control over them and hence make a useful contribution to independent living and inclusion. It doesn’t belong to government, even if government declare it as policy, in just the way independent living doesn’t belong to government despite the independent living strategy etc. If we see it this way we can define authentic personalisation, ask public agencies to adjust how they work to support it and ourselves act to bring it about. Seeing it simply as policy encourages us to define it as failing and eventually of no use (because we can guarantee many will continue to “deliver” it badly) and simply place blame. If we do this we risk giving encouragement to those who don’t see people having control over the public services they use as important. We will authorise systems and professionals to get on with what many see as the real business of commissioning and providing “services” that people are given or placed into (perhaps with a bit of outcomes based stuff thrown in).

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