Outdated system and underfunding are key barriers to personalisation

Disabled people are routinely having their human and civil rights undermined because of years of underfunding and an outdated care system, according to one of the authors of a groundbreaking new book on personalised support.

Supporting People: Towards A Person-Centred Approach has been written by service-users and those who work closely with them.

The book builds on evidence from the Standards We Expect project, the largest independent study so far of person-centred support, which was also published this week.

Professor Peter Beresford, one of the authors of the book, said that more and more people who needed social care support were not having their needs met or their rights respected.

He told an event held to launch the book and the study that service-users and others on the frontline of social care had told researchers that person-centred care should ensure the “power is with the person, not the organisation”, but the experiences of many of them had been “very different”.

Beresford, who chairs Shaping Our Lives, the national service-user and disabled people’s network, said the barriers in the way of proper person-centred support included the institutionalisation of long-term service-users, “tokenistic” and “ineffective” service-user involvement, the poor wages and other terms and conditions of care workers, and an over-reliance on unpaid carers.

Although there were “many examples of good practice” at local level, he said, the fundamental barriers preventing real personalisation were “many years of underfunding” and an “outdated” culture of means- and needs-testing of service-users.

He also warned that social care-users were increasingly being stigmatised as “dependant and scrounging”.

The Liberal Democrat MP Norman Lamb, the chief parliamentary and political adviser to Nick Clegg, the deputy prime minister, welcomed the report.

He said there was a need to “radically move away” from social care’s traditional “paternalistic approach”.

But he warned that the move towards personalisation was “being undermined by a shortage of funds”, while he was “very concerned” about the way that some local authorities had responded to public sector funding cuts.

He said that some disabled people in his home county of Norfolk had been transferred onto personal budgets while at the same time having their funding cut.

Among its findings, the study – which was led by service-users and supported by the Joseph Rowntree Foundation – found there had been too much discussion of the methods and techniques of personalisation, and not enough on how to achieve person-centred outcomes.

18 May 2011