"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
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)
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
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.