Personalisation in a Time of Cuts
Author: Kate Whittaker
A fundamental shift in the way social care is delivered has been gathering pace in recent years, and the UK Government has adopted it with gusto and is rolling it out to other areas of service provision, such as supported housing and health. But with budget cuts in full swing, and disabled and other vulnerable people who use social welfare services being among the hardest hit, there are concerns that the ‘personalisation agenda’ may in practice be delivering funding cuts at the expense of the goals that it is founded on. Lawyer Kate Whittaker explores how the interaction between these two trends is impacting on the lives of those people affected.
What is ‘personalisation’?
Much rhetoric has been applied to the term, but at heart it is a principle by which care arrangements or other services provided for a disabled, elderly or ill person take into account their preferences and the outcomes they want to achieve, recognise their expertise about how their needs are met, and offer a greater level of control and flexibility for the individual than traditionally arranged or institutional services.
Apart from being self-evidently a ‘good thing’, the principle of personalisation carries with it two strands of thinking that suggest wider benefits, and also happen to chime with the Government’s cost-cutting agenda. One is that putting the user of services in control of how they are delivered generates efficiencies, because they are best placed to know how to get the most value out of the resources available to them – they know how to get more for less. The other strand of thinking is essentially that of a ‘stitch in time’: if individuals are provided with early stage support that meets low-level needs and fosters independence and well-being, then their needs will be less likely to escalate and become more costly. For example, providing a modest level of support to a disabled person living at home may avoid their health and well-being deteriorating and so reduce the likelihood of them being admitted to hospital or requiring long-term residential care.
With these ideas in mind, the Government has said that by 2013 it intends everyone eligible for social care services, and many of those using health services and other services, to have a ‘personal budget’, an identified level of resources which is available for meeting an agreed set of needs. In principle the individual will have a greater level of flexibility and control over how the resources are used, whether the budget is in the form of a cash ‘direct payment’ used by the person themselves (or perhaps more commonly by his or her family carer) to purchase support, or an ‘indirect payment’ paid on the person’s behalf to a third party organisation that provides the services in a way that is ‘self-directed’ by the individual.
But is it new?
The short answer to this question is that very little of what is being rolled out under the banner of personalisation is based on any new law. Direct payments have been available since 1997 as a mechanism for individuals to receive cash instead of direct services, and for many disabled people this has transformed their ability to employ their own support workers and manage their own care package in order to lead the lives they want.
There have been some more recent extensions of the direct payments approach, for example to cover areas such as equipment, help with housing needs and employment. There have also been pilots of direct payments for individuals to purchase healthcare through a ‘personal health budget’, such as packages of continuing healthcare for individuals with long-term conditions or complex disabilities to live in the community. But on the whole the terms ‘personal budget’ and ‘individual budget’ referred to by local authorities are used interchangeably with that of direct payments, and are identical in law.
Certainly there have been rapid developments in the techniques that local authorities are using to streamline the process by which people’s needs are assessed and a budget identified, in order to meet ambitious targets for increasing uptake of direct payments. Many authorities are seeking to cut out old style face-to-face assessments and instead get disabled and older people to complete a ‘self-assessment questionnaire’. This will typically involve a series of tickbox questions about different areas of independent living for which they may need support, often combined with questions directed at establishing whether the person has any other potential sources of support that they can turn to instead, such as family. The scores from the tickboxes are then processed under the local authority’s computerised ‘Resource Allocation System’ (‘RAS’) which generates an ‘indicative budget’ that is likely to be made available to the individual to arrange the support they need.
For many individuals the allocation of the indicative budget is the end of the process as far as the local authority is concerned: along with the freedom to use the allocation of resources flexibly, comes the transfer of responsibility for making and maintaining all the care arrangements, as well as the risks around whether the arrangements will in fact work out so as to meet the person’s needs properly and keep them safe from harm. In many cases it will be parents or other family carers who will be expected to take on the role of managing the care package; in theory they must be willing and able to do this but many do not feel they have a choice. The involvement of social workers at any stage tends to be minimal, and many people feel bewildered by the idea of arranging everything themselves, and doubtful about whether it is even possible based on the budget that they have been allocated.
Is it enough?
Worryingly, there is evidence that many of the personal budgets allocated are not nearly enough to cover all the different costs involved in setting up and running a support package. For example an individual with physical disabilities and challenging behaviour arising from a brain injury may need support workers with a sophisticated understanding of their needs in order to pre-empt difficulties before they arise. They may need small amounts of input and prompting dispersed through the day so they can be supported to manage independent living tasks themselves without getting overloaded. However after allowing for on-costs such as tax, NI, holiday, sickness and maternity pay, insurances, CRB checks, recruitment costs and so on, the money left to pay staff will invariably be minimum wage, and will based on an allowance of only a few hours a week, based on ‘pop-ins’ three or four times a day. Few if any support workers will be willing to take on a role where they are paid as little as two hours a day for several visits, so the individual will be forced to compromise and try to cram as many tasks as possible into fewer blocks of support time. Compromises in the quality and level of experience of the staff recruited will be inevitable but this invariably leads to high staff turnover which is in turn costly in terms of additional recruitment and training, and in terms of the detriment to the well-being of the person being supported.
Despite widespread problems of this kind, vulnerable people struggling to get their needs met are often unaware that they can challenge the level of provision that they are offered, or indeed decline direct payments altogether and opt to receive more traditional services that are managed for them. There have been many cases where individuals faced with a substantial cut in the budget offered to them relative to the cost of direct services they may have received previously, have been unable to get any explanation from their social worker as to how the new amount is supposed to meet their needs. ‘The computer says £74.10 per week’ is the common refrain.
It is made clear that there is no going back to the old system: cost-cutting measures by local authorities are including large-scale closures of services such as day centres and respite homes relied on particularly by those with more complex needs. In many cases personal budgets will include no allowance to replace the support previously offered in such settings, as people will be expected to use their own creativity to access free services from charities, or failing that families will be expected to step into the breach, whether they want to or not.
This is the reality of the ‘Big Society’ idea as it is being applied in social care. Far from being new, this is the approach that existed prior to the welfare state, when elderly and disabled people faced the stigma and lottery of being dependent on family or charity for help, rather than being recognised as having the right to have support to live equally with other people.
Legal underpinnings of community care support
Importantly, however, underlying the varied and often baffling practices that are presented as ‘the new way of doing things’, is a bedrock of law governing assessment and determination of eligible needs that provides important safeguards for vulnerable people in need of community care support, and much of which has not changed significantly since the 1948 National Assistance Act.
Fundamentally, elderly, disabled and ill people are entitled to have their needs properly assessed by a qualified social worker, and then to have support provided that actually meets those needs determined as ‘eligible’ by application of clear, fair eligibility criteria. Assessment must involve an analysis of the risks to different aspects of a person’s independence and well-being that will arise from each need, if it is not met – i.e. disregarding whether they have money, family or other resources potentially available to address that need.
The risks may include:
- health problems developing or the person’s life being threatened;
- abuse or neglect occurring;
- loss of choice and control over the immediate environment;
- inability to carry out personal care or domestic routines;
- inability to sustain involvement in aspects of work, education or learning;
- inability to sustain family and other social roles, responsibilities and support systems.
Each of these types of risk are acknowledged as equally important and worthy of protection. Each need will be banded as either low, moderate, substantial or critical depending on the level of risk involved. So for example a person will be recognised as having a critical need for support to access day-time activities in the community if without it they will be a prisoner in their own home and ‘vital social support systems and relationships cannot be sustained’.
Each local authority providing social services must set its own eligibility criteria based on this national framework, but may take account of its local resources and demographics in deciding where to set the eligibility threshold, for example whether to provide services to those with low or moderate needs, or only those with substantial or critical needs. Needs below the eligibility threshold do not have to be met by the local authority, though they are encouraged to meet such lesser needs in order to prevent them developing into more serious ones – the stitch in time idea.
In recent months a very few local authorities have published proposals to raise their eligibility threshold so that only critical needs will be met. On this basis, an elderly or disabled person who, without support, will be unable to carry out the majority of personal care, cleaning, shopping and other domestic routines and will be likely to suffer neglect as a result, will not be eligible for that support because the risks involved would be considered only substantial. Only if the neglect they are likely to suffer is regarded as ‘serious’ neglect will they be acknowledged as having a critical need, which is therefore eligible for support.
Clash of the agendas
It is perhaps one of the starkest illustrations of how the cuts agenda has coloured the personalisation agenda, that proposals such as this have actually been presented by local authorities as furthering the goals of personalisation. In response to a judicial review challenge by five severely disabled adults against a raft of proposed cuts to its adult social care budget, Birmingham City Council argued that by providing personal budgets only to people with critical personal care needs (not even those with critical needs in respect of other aspects of independent living and well-being), and providing only ‘information, advice and signposting’ to those with substantial or lower needs, they were in fact building on a ‘vision that the vast majority of people can use their own resources and skills to contribute to meeting their adult social care needs’ and ‘fostering strong and supportive communities that value the contribution that each of their citizens can make’.
The High Court disagreed. On 19 May 2011 Mr Justice Walker held that in approving the new policies Birmingham had breached its statutory duties to disabled people. The decision to move to ‘critical only’, along with other features of the policy, were struck down and Birmingham was required to rethink the substance of its reforms to adult social care.
The Birmingham case, in which Irwin Mitchell acted for one of the claimants, has been striking in the scale of the challenge and of the proposals concerned. But there are many other publicised and unpublicised examples of legal avenues being successfully used to challenge cuts to individual care packages and local community care services, by reference to the underlying duties to properly assess and meet needs – not just to provide a computer-generated allocation of resources.
If, as a society, we wish to reclaim personalisation for the goals it was originally intended to serve, we must re-assert the long-standing duties on local authorities and other public bodies to truly meet the needs of vulnerable people.
An earlier version of this article was first published in Irwin Mitchell's Impulse magazine.
Personalisation in a Time of Cuts © Kate Whittaker 2011.
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