The eligibility question – the real source of depersonalisation?

Abstract

There have been a number of high-profile strategies over recent decades to raise social care above what is widely regarded as an unacceptable service in the United Kingdom. Quite apart from all too frequent high-profile scandals, it is seen as a service that is depersonalising and stigmatising. None of the strategies to bring about change, most of them introduced to great fanfares, have delivered the changes they promised. This article sets out a view that the reason why they have all failed is that none of them have identified or therefore tackled the underlying problem, which is the relationship between needs and resources. Underfunding has long been a serious concern for campaigning organisations. The article does not detract from that contention. However, it sets out how strategies to manage the gap between needs and resources, more than the funding gap per se, are themselves the root cause of depersonalised and chronically impoverished services. The unlikely source of these strategies can be traced to the unintended consequences of an Act of Parliament that had the best of intentions.

Keywords:

• Personalisation
• eligibility
• funding levels

Context

During the recent UK Parliament (international journal audience) Public Accounts Committee hearing into Personal Budgets in Social Care, the Chair asked the following question of the sector leaders giving evidence:

… if a local authority does not have enough money to meet the increasing direct payment budgets, what happens? The Care Act is really clear about sufficient support. Who bails them out? and ‘it might not be possible to square that circle’. (UK Parliament Public Accounts Committee 2016)

The Chair was given the following answer by the representative of the Department of Communities and Local Government:

We wouldn’t expect them to get to that position, because they have to set a balanced budget. (UK Parliament Public Accounts Committee 2016)

This brief exchange reflects what might be called the eligibility question – how is the circle of needs and resources squared? Demand comes in the form of needs that are unique to each individual, and the costs of meeting them can vary from tens of pounds to tens of thousands of pounds a year. But budgets are fixed in advance of spending decisions. How can the government be so entirely confident that council budgets will always be ‘balanced’?

The 1970 Chronically Sick and Disabled Persons Act

The source of the answer to this question can be traced back to 1970s. Alf Morris MP, a life-long campaigner for disability rights, succeeded in getting a private members Bill onto the statute books – the Chronically Sick and Disabled Persons Act (HMSO 1970). State support for disabled people had long been criticised for its meagreness. Among other provisions, the Act created a legal duty for councils to provide services to individuals who were in need. No longer would councils be able to plead insufficiency of funding as a reason not to provide. The Act aimed to require councils to assess the numbers and quantum of local care need. This was the first piece of legislation aimed at strategic planning. This part was not, however, implemented.

The Act was seen as a great triumph for disabled people. It was described 40 years later as ‘a Magna Carta for the disabled’ (BBC 2010). However, whilst the provision was inarguably well intentioned, it resulted in unintended consequences that have been devastating and long lasting. Whilst the Act created the legal right to services, it did so only once the council was satisfied the person had a need that made it necessary to do so. Councils soon learned that to control the clear threat to their budgets they had to restrict their view of what a ‘need’ was. Given the fiduciary duty to spend within budget, central government had created a Hobson’s choice for councils.

The effect was three-fold. Firstly, there was no change in the level of support people received. That was still determined by the amount of resources made available. Secondly, the Act institutionalised a conflictual relationship between service users and councils. They had quite different bases for how ‘need’ was perceived. For the service user, it was their lived experience; for councils, it was their resources. Thirdly, it shifted the responsibility for decisions about levels of support that should be provided from the political system to the judicial system. Whilst there are many people who believe intuitively giving power over councils to the judiciary is a good thing, it has consistently failed to improve the lot of service users. Courts in both the United Kingdom domestically and Strasbourg show a marked reluctance to challenge anything more than the worst excesses where neglect is occasioned by public bodies (Clements 2013). They are inclined to respect the right of elected bodies to determine their own priorities. This was made apparent by the landmark judgement in the case of Barry v Gloucestershire (House of Lords 1997). The judgement used the 1970 Act to declare that a council could not only determine what it believed was meant by need, but also have their own view about whether it was necessary to meet a need. Both judgements preceded the decision about what support to offer.

These three factors have dominated social care in the United Kingdom for the past 50 years. The following two scenarios illustrate how:

•

In a recent case heard in the UK Supreme Court (2011) the appellant was a woman in her 60s who had been a principal ballerina who had developed an impairment. She had a need to visit the toilet frequently during the night but could not get from bed to toilet without physical support. The council duly provided her with a night carer. However, as budgets tightened they decided they could not afford the £200 a week this cost. They re-defined her ‘need’ from being able to get to the toilet to just being safe at night. This newly formulated ‘need’ could be met with a supply of incontinence pads costing a few pounds a week. The service user was outraged, pointing out that her needs were not just physical but included a need for dignity. The Supreme Court rejected her appeal.

•

In 2012, the Minister for Care, Paul Burstow, was asked by the Health Select Committee about the ‘funding gap’, which he was told was estimated to be as much as £7 billion (UK Parliament Health Select Committee 2012). His answer was that he did not believe there was a funding gap. This was because ‘eligible need’ was always met. This was a true statement. However, it omitted to point out that, because of the circular process whereby ‘eligibility’ is determined by resources, it would be true no matter what the size of the budget. He went on to discredit research that sought to quantify unmet need on the premise there was no agreement amongst academics as to what constitutes unmet need. This position can be placed within the wider context, and indeed evidence, of the phenomenon of disability being defined as the state deems it, with the prevailing fiscal conditions a determining factor (Roulstone 2015).

A landscape is thus painted of an under-resourced and depersonalising service, unchallenged by a judiciary that believes it has no power to intervene, and a complacent political establishment.

Attempts at remedy

There have been three major attempts to change this landscape.

The Community Care reforms of the 1990s

The UK Audit Commission (1986) reported that social care was dominated by a one-size-fits-all culture. This was bad for the individual and led to poor value for money. The government devised a solution, which was to create a system to deliver tailor-made care packages based on needs-led assessments. It was called assessment and care management. The title underlined how identification of need – assessment – should precede considerations of resource – care management. However, as Dalrymple and Burke (2006) point out, the subsequent Guidance to the Act undermined this vision by advising:

‘… that needs are unique to the individual’ but that ‘they have to be met within available resources’. (2006, 205)

This was the green light to continue applying the circular definition of need used to control demand. The system of assessment and care management has gone on to be widely discredited.

Direct payments

In the 1990s, the UK disabled people’s movement – who abhorred the system that controlled how their needs were seen – succeeded in creating an escape route. This was in the form of legislation that created direct payments. Rather than services, they could have cash and create their own support system, based on the philosophy of independent living, mostly through employing their own staff as personal assistants. Research has consistently shown it to have worked very well. The problem is that after 20 years only about 5% of service users are able to take advantage of this route (Slasberg and Beresford 2015). With only hesitant central government support, without the creation of the supportive network of user-led organisations demanded by the disabled people’s movement and with inadequate social care funding unaddressed, the mainstream system has remained unchanged for the 95% majority.

Personal budgets

The charity In Control believed they had the answer to low take-up of direct payments. Their thinking was that if you fairly allocated the council’s budget between all who needed care or support, you can give them the cash and they can choose their own services. This was seized on by the UK government of the day and has been embraced by governments since. It offered the prospect of better outcomes for all without any additional expenditure. But there were two problems that had to be overcome before implementation. Firstly, how can you decide what a ‘fair allocation’ is? Despite extensive efforts to establish a ‘resource allocation system’, none was found that commanded universal confidence. Secondly, how can you be sure that people will choose not just what they want, but what they are seen to need. The solution was to make the allocation of resource provisional or ‘indicative’ only, with the actual allocation decided only after the council had carried out its needs assessment and decided what support to offer. The effect was to strangle the strategy at birth. The real determinant of what people got was unchanged. The system to create the up-front allocation has been described as being like a ‘cog within a machine with which it does not connect’ (Series and Clements 2013, 226). A submission to the UK Public Accounts Committee hearing describes the personal budget as ‘a phantom policy’ (Shaping Our Lives 2016). It has had no impact on how the system functions, notwithstanding a continuing belief that it is working. The Shaping our Lives submission sets out how the perception of it working has been achieved.

The situation today

The 1970 Act is now defunct. However, its key provision of separating need from service response lives on in the Care Act 2014. But the Care Act makes another provision which has the potential to bring about change. Whilst it retains Alf Morris’ idea of obliging councils to meet certain needs as a legal obligation, it also makes explicit the option of meeting other needs on a discretionary basis. On the face of it, this might appear a weaker, second-best option. However, what it does is enable councils – for the first time – to be transparent about people’s needs as experienced by them and thus transparent about whether there is resource to meet them. This means firstly that it is possible to create a relationship of trust between councils and service users. Secondly, the 50-year taboo about admitting a funding gap will be lifted. Responsibility for how much need is met would be shifted back from the judiciary to the political system where, arguably, it properly belongs. However, we have set out previously (Slasberg and Beresford 2014) how government policy, expressed through the statutory guidance to the Care Act, is undermining the ambitions of the Act. It is leading councils to perpetuate the system of the past 50 years whereby ‘need’ is defined by resources.

Is there any hope of resolution?

There are two reasons to be hopeful. The UK Public Accounts Committee asked the right question – how do you square the circle of needs and resources? It remains to be seen whether they are willing to be fobbed off with the answer they were given at the hearing. Secondly, notwithstanding the weight of history and the weight of UK government pressure to make no changes to the fundamental way social care has been delivered, individual councils may take the opportunity created by the Care Act to have an honest and transparent approach to the way needs are assessed, and to be honest about the relationship between needs and resources in their community.

Disclosure statement

No potential conflict of interest was reported by the author.