Jenny Morris wants us to remember what we have learnt as we move forward

"If you don't know your history, you're like a leaf that doesn't know its part of a tree".

So blogs Jenny Morris as she discusses how we need to remember the lessons we have learnt from past struggles by disabled people to live 'ordinary lives' while we move forward with the changes as we implement personal budgets in adult social care and face unprecedented cuts.

Jenny highlights the example of a recent event hosted by SPECTRUM (previously Southampton Centre for Independent Living) marking the 30th anniversary of the origins of the Independent Living movement in Britain.

The 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 1970's who was paralyzed as a result of an accident and like many faced a lifetime of isolation and dependency in institutional care.

Jenny raises this example as showing how one individual could have such a profound effect on where we are today. 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" opening up the way for direct payments and personal budgets and the world of personalisation we have now.

As Jenny explains it wasn't just about the money: 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.

It did however take another 13 years before the campaign for direct payments resulted in the Community Care (Direct Payments) Act 1996.

And 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.

John's journey is just one example Jenny highlights as she talks about the many steps that have been taken in the move toward personalisation and direct payments being availbale to all.

The examples make it sound like those that have been campaigning for independent living all these years have achieved what they were struggling for. But she explains, that is far from the case. It is not just because of the cuts social services are facing, but because there appears to be a return to extremely negative attitude towards disabled people.

And this is what Jenny hopes we can change by looking at where we can from:

'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 Independent Living.  There is also no entitlement to support to use direct payments - in the way that was envisaged by Centres for Independent Living.'

The problem is seems is that the experience people have of personalisation is still determined by the local authority workers they come into contact with - '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… 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.'

Sadly, from Jenny Morris' point of view, the issue that John Evans, who championed the right for disabled to determine how their funding was spent and pioneered the concept of independent living, faced are still affecting us today.

'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.'

Jenny Morris is a once researcher and influencer of policy who writes her own blog as well as for the Leeds Disability Archive.

To read the full blog visit Jenny's blog site.

You can also read more about where the personalisation agenda is in other recent blogs:

Martin Routledge, Alex Fox, Miro Griffiths and Vidhya Alakeson blog about personalisation - asking Is it time to give up or move on? Read the full blog here.

Julie Stansfield blogs about how small steps can lead to big change. Read her blog here.

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Last Updated : 05 February 2014. Page Author: marijke.hirst.