Wednesday, 29 January 2014

“If you don’t know your history, you’re like a leaf that doesn’t know it’s part of a tree”.

SPECTRUM (previously Southampton Centre for Independent Living) recently hosted an event to mark the 30th anniversary of the origins of the Independent Living movement in Britain.  Someone once said “If you don’t know your history, you’re like a leaf that doesn’t know it’s part of a tree”.  As local authorities implement ‘personalisation’ in adult social care in the context of unprecedented cuts, it’s vital that we keep hold of the lessons learnt from past struggles by disabled people to live ‘ordinary lives’.

SPECTRUM’s event focused on the achievements of John Evans, one of the members of Project 81, a group of residents at Le Court Cheshire Home in Hampshire in the late 1970s.  John became paralysed as a result of an accident in his 20s and, like other ‘severely disabled’ people faced a lifetime of isolation and dependency in institutional care.

John concluded that if health and social care authorities gave him and others some of the money that they currently gave the Leonard Cheshire Foundation, “we could find another way of meeting our needs”. This was the radical idea that opened the way to what became the campaign for direct payments and underpins (or should underpin) the current roll-out of personal budgets for adult social care.   Crucially, it wasn’t just about the money that could be saved but about giving disabled people control over how their support needs are met.

However, it was illegal for social services authorities to pay cash to disabled people in lieu of services. John therefore proposed that Leonard Cheshire Foundation should act as a ‘sponsoring’ organisation and pass on to him the money that Hampshire Social Services would pay to enable him to employ people to provide the assistance he needed in his own home. 

John got his inspiration from other disabled people – not only in Britain but also in other European countries and in the USA – and this learning and support shared amongst disabled people has been a consistent theme in how independent living has developed since then. His achievement in finally moving into his own home in 1983, employing his own personal assistants marked the beginning of the Independent Living Movement in Britain. 

That achievement and progress since then have also been made possible by the small numbers of people working in statutory and voluntary sector organisations who share the vision that disabled people should have the same aspirations as anyone else.  It took another 13 years before the campaign for direct payments resulted in the Community Care (Direct Payments) Act 1996, years during which some far-sighted social workers and a few Directors of Social Services worked in partnership with disabled people to demonstrate that people who need support should have choice and control over how that support is provided.

Although it was people with physical impairments who started the campaign for direct payments in lieu of social care services, People First – the national organisation of people with learning disabilities - was very effective in convincing the government that people with learning disabilities should also be able to receive direct payments. Eventually direct payments were opened up to everyone entitled to social care support: older people, people with mental health support needs, carers and disabled children.

All through this campaigning disabled people tried to bring about a shift in the meaning of ‘independence’ and ‘independent living’.  As Simon Brisenden wrote in 1989,

Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.[1]

John’s journey towards independent living also involved the setting up of Hampshire Centre for Independent Living in 1984  – the first CIL in the UK: by 2004 there were about 40 such organisations, run by disabled people, employing disabled people, which provided the practical and campaigning support to enable thousands to use direct payments, as well as tackle other basic needs such as housing, access, employment and education. [2]

At the same time, there were radical developments in support for people with learning disabilities.  The National Development Team and visionary civil servants within the Department of Health, together with other pioneers working in local authority and voluntary learning disability services, individuals and their families were treading the same path as John Evans and the growing Independent Living Movement. One result was the 2001 White Paper, Valuing People: A new strategy for learning disability, based on the four principles of “civil rights, independence, choice and inclusion” and promoting person-centred planning.  At the same time, In Control demonstrated that allocating a specific budget to an individual and enabling them to express their preferences for how they want to live their lives was a more effective and efficient use of public resources.

Both strands had a big impact on government and on the social care policy agenda.  To some extent these came together in developing the 2005 strategy, Improving the Life Chances for Disabled People.  This adopted the social model of disability and defined independent living as:

all disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community.  This does not necessarily mean disabled people ‘doing everything for themselves’ but it does mean that any practical assistance people need should be based on their own choices and aspirations.[3]

The Strategy proposed the piloting of individual budgets, while in 2007 the Department of Health published Putting People First, a policy for personalising social care services.  All of this led to the roll out of personal budgets for adult social care and most recently personal health budgets.

We might think, from this account, that those who have been campaigning for independent living all these years have achieved what they were struggling for.  But that is far from the case – and it is not just because we are currently facing unprecedented cuts to public services and a return of extremely negative attitudes towards disabled people.

Throughout the last 30 years, disabled people have struggled, but failed, to establish a right to independent living.  The nearest we have got to that is that local authorities now have to offer a direct payment in lieu of services but there is no entitlement to a level of payment which would guarantee access to IL.  There is also no entitlement to support to use direct payments – in the way that was envisaged by Centres for Independent Living.

Local authority social services departments remain in control over how people access support.  For all the rhetoric about ‘personalisation’ and ‘choice and control’, the process of getting a personal budget or direct payment is usually dominated by complicated procedures devised by the local authority because they fear risk, mistakes and fraud. And because all too often people working in statutory, and some voluntary sector, organisations think that they know best.  Access to support has always been dominated by the rationing of scarce resources and this is getting worse but is too often masked by the rhetoric of ‘personalisation’.

Often disabled people, and those supporting them, have no knowledge of the history of the struggle for independent living.  Their experience of ‘personalisation’, of personal budgets and of direct payments is dictated by the local authority workers with whom they come into contact.  Too often these workers themselves have no knowledge of where the policies they are implementing came from, and their practice is dictated more by bureaucratic procedures than by the principles of independent living. These procedures deliver personal budgets in ways which do not enable choice and control – such as restricting their use to an ‘approved’ list of agencies.  Too often people are still not able to choose who provides their support, or what they are supported with and when. Everyday language is replaced with meaningless jargon.  Limitations are placed on people because of a fear of ‘risk’ and far too often local authorities do not trust people to use their budgets in ways which will achieve good outcomes.

When John Evans became disabled in the 1970s, he passed from a life where he took self-determination for granted to a life where his daily experiences, his aspirations and his future were curtailed by others.  He and the other pioneers of independent living changed our way of thinking about what is possible.  The problem is that access to the resources which would make independent living possible is still determined by those who, all too often, have little or no understanding of where current policies come from.  There remains a yawning gap between policy rhetoric and reality, a gap made possible because – as 30 years ago – disabled people still do not have a legal right to choose how they receive the support needed to go about their daily lives. 

[1] Simon Brisenden, ‘A Charter for Personal Care’ in Progress, 16, 1989. Disablement Income Group.

[2] Twelve basic needs or rights were eventually identified by the independent living movement: see

[3] This was taken from the Disability Rights Commission’s Policy Statement on Social Care and Independent Living (2002), written by Gerry Zarb.