One group, headed by Professor Peter Beresford – a self-described “service-user activist” and director of Brunel University’s Centre for Citizen Participation – wrote to social services directors last month to call for a change in direction in how personalised social care was delivered.
They believe that the system of self-directed support is “undermining” the quality of care and support and causing “significant damage”.
Those who signed Beresford’s letter include fellow disabled academics Professor Colin Barnes and Professor Nick Watson, and the disabled consultant and campaigner Jane Young.
They stress that they are “totally committed” to personalisation, but are just critical of the way it is currently being delivered.
But now a letter to the same directors of social services – signed by 70 personal budget-holders, relatives and allies, who call themselves The Doers Club – has accused Beresford’s group of being “ideologically driven”.
They say they “profoundly” disagree with the criticisms, and insist that any problems are caused by councils failing to follow the principles of self-directed support, where each individual’s personal budget to pay for their own care is supposed to be allocated “up front” through a resource allocation system.
The letter, written by carer Les Scaife and personal budget-holder Gavin Croft, says: “We believe that this is a really unhelpful distraction from the two main issues – massive reductions of funding in social care, and councils struggling to share power with people.
“For many of us, the arrival of self-directed support and personal budgets has been the most important policy development affecting the lives of us and our families.”
Members of The Doers Club are all part of an online network of disabled people, relatives and allies, many of whom have taken Partners in Policymaking courses run by the charity In Control. They sought advice from the charity after reading the Beresford letter.
In Control pioneered the use of self-directed support more than 10 years ago, and is largely funded by central government grants, and fees from local authorities, health bodies and other organisations “that enlist our help to implement personalisation”.
Beresford said he was “really pleased that there is beginning to be a more open discussion about personal budgets policy”, which he said bears no relation to its roots in the direct payments model developed by the disabled people’s movement in the 1970s and 1980s.
He said: “The more evidence that there seems to be, the more problematic the present policy on personal budgets seems to be.”
He said the “really progressive” policy of direct payments was being reshaped into something very different by the government.
He said: “The future of direct payments is absolutely at risk. This government has absolutely no commitment to direct payments as a viable way for disabled people and other service-users to live their lives on an equal basis to other people.
“The amount people are getting is going down and people are constantly being reassessed and losing their entitlement… the budgets for social care are getting smaller and smaller.”
He said there was a need for all those “with a commitment to real self-directed support and real choice and control for disabled people and other service-users” to open up a proper debate on “how best to take that forward”.
Sue Bott, director of policy and development for Disability Rights UK and a trustee of In Control, said that although there were problems with the current system, she did not agree that self-directed support should be abandoned.
She said: “I think more work needs to be done, and is being done in some local authorities, to get the up-front allocation right. This is essential for transparency and equality.
“Whilst I recognise the good work many social workers do, I am not in favour of allocations purely decided by them.”
She added: “The main problems with personal budgets are a lack of resources for social care and the reluctance of some social care professionals to share power with people who need support.”
Martin Routledge, head of operations for In Control, said he was “really happy to have a debate”.
But he said there was other “more credible” evidence that backed the self-directed support model, which was – at present – the best way of securing power for disabled people and their families over their public services to obtain inclusion and independent living.
He added: “We [and Peter Beresford] probably agree on a large number of things. We agree that it is terrible what is happening to resources in social care and I think we agree that in that situation there are enormous pressures on councils and disabled and older people.
“I also know that even when the money was quite good, it was still very difficult for councils to actually share power with people, for complex reasons.”
He said he also agreed that some of the ways in which some elements of self-directed support were being delivered were “very poor”, but he added: “The area we disagree on is the idea of the importance of an indicative allocation in the personal budget process.
“People should go into the support planning process with some indication of the money that they might get in order that they can exercise power.”
Routledge said In Control was continuing to ask councils to survey disabled people who use personal budgets to find out “what is working and what is not working”, and that was “providing increasingly clear evidence” that if personal budgets were delivered through self-directed support, they tended to produce better outcomes for people.
He called for a peer-reviewed article to analyse which piece of evidence “stands up strongest”.
1 May 2014