The government’s Office for Disability Issues (ODI) last week highlighted the need to break down the barriers to implementing independent living for disabled adults.
A report from the cross-departmental body identified an “inherent resistance” towards change in the sector.
The claim comes at a crucial time. As care services minister Ivan Lewis said in Community Care, the government sees direct payments as a “mainstream part of the social care system going forward”, while he has also said that individual budgets, which are now being piloted, are almost certain to be taken forward.
The two initiatives represent the clearest manifestation of independent living policies within social care, putting purchasing power in the hands of service users to provide them with choice over their care, moving well away from councils bulk-buying undifferentiated packages of care for disabled people to slot into.
Figures indicate an improvement in local authority performance in terms of direct payments – expenditure rose from £126m to £196m between 2003-4 and 2005-6. But significant variations exist between councils, and recipients represent a small minority of those eligible.
The ODI’s report part of a 12-month cross-government review of independent living shows the difficulties in empowering disabled people unless social, economic and attitudinal barriers are overcome.
It said adult social care, in its present configuration, employed vast numbers of people, for whom provision of care to disabled people was their “bread and butter” role, and there was a clear reluctance to let go of this.
It also revealed a vested interest in keeping disabled people “passive and dependent” so that the status quo in terms of institutions, processes and workforce skills could be maintained.
Ian Loynes, chief executive of Southampton Centre for Independent Living, believes concerns over employment, a reluctance to empower service users and a “risk-averse” environment within social care are key barriers to more widespread independent living for disabled people.
But the biggest challenge, he claims, is convincing commissioners and providers to relinquish their power over services.
“Somebody has to give up the power, and people don’t willingly want to do that,” he says. “Ultimately, I think powers will move in different directions but it’s not a black and white issue – there are definitely shades of grey.”
John Dixon (pictured left), vice-president of the Association of Directors of Adult Social Services, who sits with Loynes on the ODI’s expert panel on independent living, believes a major cultural change is needed to transform “short-sighted” views on the current system of traditional support.
“Commissioners and providers are offering a relatively limited menu of services and people must fit in to those,” he says. “Personalisation of services turns this on its head and allows for a more holistic approach.”
John Knight, head of policy at disability charity Leonard Cheshire, agrees there is a vested interest in the sector in keeping disabled people “passive”, but believes it is not entirely a conscious decision.
“It is a subconscious action – this is a profession which is institutionalised and doesn’t have the confidence and security to break free from that.” He adds: “We must be careful about demoralising an already demoralised profession.”
According to Knight, there is a much wider issue at stake concerning whether commissioners and providers fully understand the concept of independent living and its outcomes for service users. “I think there is a great fog over this issue which is clouding what exists now,” he says. “I’m not sure the idea of users becoming commissioners – with their own financial and moral power – has been grasped by everyone.”
Both Loynes and Knight believe increased empowerment of disabled people would not result in huge redundancies for the social care sector. However, Loynes adds: “The system is set up to benefit the service user, not the employer. They have to change or they will become extinct.”
Dixon echoes the line taken in the 2005 adult social care green paper that a shift towards empowering users would not result in fewer social workers, but transform them from gatekeepers of services – the current care management role – to a more supportive role.
Ruth Cartwright, professional officer for England at the British Association of Social Workers, says a greater incidence of independent living among disabled people could result in staff working in different ways or locations.
For instance, she says home carers, currently employed by councils or agencies, could become personal assistants employed by direct payment or individual budget recipients.
Cartwright believes the resistance identified within the sector towards self-directed care is a natural reaction to alternative ways of working.
“It’s human nature to be resistant and anxious about change,” she says. “But this is a change for the better. It will free social workers in the way they want to work.”
However, Helga Pile (pictured right), Unison’s national officer for social care, questions the charge of resistance from staff contained in the ODI report, describing it as “not very helpful” and points to a lack of investment in the system.
She says: “This [charge] is an easy option which too many politicians and policymakers are hiding behind. Social care is dominated by acute funding pressures, ever-tightening eligibility criteria and the push to outsource provision to the cheapest providers. This does not add up to much of a sense of ‘power or control’ for staff working in the sector. It does create huge barriers to the extent to which the principles of independent living can be achieved consistently.”
Unison has been ambivalent on direct payments, but recently agreed a joint statement with disabled people’s organisations in Scotland, balancing support for empowering users with calls for staff investment (see The Unison Stance).
The ODI report said there was emerging evidence of the cost-effectiveness of independent living, but highlighted “marked” gaps in the availability of data. This is partly due to the fact the independent living agenda remains relatively new, both in terms of research and implementation, it said.
Dixon says that a shift to independent living services will not lead to a rise in demand and costs, despite the predictions of some providers.
“There is no inherent reason why giving people control over their own budgets will require social services to give out more money,” he says.
Cartwright adds: “People are waiting to see how the individual budget pilots are panning out,” she says. “There has been a lot of argument about how much this is going to cost but when service users work out their own care, it often works out cheaper.”
Early evidence from the In Control scheme – a prototype of individual budgets – suggests such “self-directed care” could improve quality and cut costs. And the Department of Health’s Care Services Improvement Partnership last month said it would team up with In Control to examine how independent living can help councils cope with the forecast demand for social care.
But Loynes says the concept of independent living is a “human rights issue” to do with empowering users, rather than a financial one.
He adds: “We are operating in a fairly risk-averse environment. But independent living is about allowing people to assess the risk factor themselves.”
The Unison stance (back)
Unison has agreed a joint statement with the Glasgow Centre for Inclusive Living, the Lothian Centre for Independent Living, the Scottish Consortium of Direct Payments Support Organisations and the Scottish Personal Assistant Employers Network (Spaen) on direct payments in Scotland.
Each body will help formulate good practice terms and conditions for people employed through direct payments. They will also campaign for increased levels of funding to cover decent pay, training, holidays and pensions.
Spaen’s Peter Brawley says: “These payments are often vital for the person concerned but they are not a substitute for other public services, and are currently set too low to cover the cost of employing staff at a decent level of pay, training and holidays.”
What is independent living?
The report adopts a broad definition, as provided by former Social Care Institute for Excellence chair Jane Campbell: “Independent living means that disabled people have access to the same life opportunities and the same choices that their non-disabled brothers and sisters, neighbours and friends take for granted.
“That includes growing up in their families, being educated in the local school, using the same public transport, getting employment that is in line with their education and skills and having equal access to the same public goods and services.”
In social care, this means giving disabled people the power to purchase their care packages through direct payments and individual budgets to provide services that are personalised to needs rather than bulk-purchased.
● Choice and control for disabled people is dependent on the removal of social, economic, and attitudinal barriers.
● A lack of robust cost and benefit data of independent living services precludes analysis that can illustrate the long-term benefits.
● But long-term forecasts to date indicate care provision will be better quality, more efficient and enhanced value for money through increased personalisation of services.
● Investment in long-term, sustainable projects rather than small pilots will realise the potential cost savings of independent living.
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