Mainstreaming user choice through Personal Budgets

The introduction of DPs had pushed the boundaries of choice to give users control over the dimension from whom, when and how care was provided – at least for those opting for DPs.

81

With DPs, users had effectively been recognised as co-producers of care (Leadbetter 2004).

For those that did not opt for DPs – and among older people these were the majority of users – it was still up to professionals to judge and sanction on their behalf which services were best suited to meet their needs. Moreover, the gatekeeping role remained firmly in the hands of professionals – and with time the services sanctioned by LAs had increasingly been limited to personal care – enabling them to influence take-up (cf. Spandler & Vick 2005; Ellis 2007).

Users were often left with one option: to vote with their feet – i.e. exit – to influence the what dimension of choice and this only if they were able to manage DPs (Hardy et al. 1999).

Concomitantly, LAs’ increasingly tightened budgets translated into DPs of lower amount, which left little resources available to fund anything else but essential personal care needs.

Finally, DPs only covered the social care component, leaving out other sources of funding for care, which could compound on the complexities of navigating the system of care benefits. It was against this backdrop that the Individual Budgets (IBs) experiment came to be implemented.

The proposal to experiment with IBs grew out of a series of policy documents in the mid-2000s, that sought to level the playing field for all groups of users to benefit from choice, and from the experience of the initiative In Control (Glendinning et al. 2008). Piloted by people with learning disabilities, In Control sought to personalise services by giving users greater leeway in the definition of their needs and means to satisfy them (Poll et al. 2006).

This meant not only employing PAs or purchasing services directly from home care agencies, which the DPs already allowed for, but also paying relatives or friends or alternatively purchasing mainstream activities such as social outings. This vision was reflected in official policy documents, among these chiefly was the Report Improving the Life Chances of Disabled People, which detailed the vision of how “individualised budgets” would pull together different funding sources to help meet the goal of independent living:

Disabled people – and the families of disabled children – should be able to choose whether they take their individualised budget in cash, in some combination of services and cash payments, or entirely as services commissioned by their local authority. The budgets should be used to get whatever type of support the individual needs. (Prime Minister’s Strategy Unit 2005, p.13).

Following the principles of the In Control initiative, IBs were going to represent a fundamental shift in the delivery of care in five key areas, as laid out in Improving the Life Chances of Disabled People:

82

i. Funding: unlike DPs, IBs gathered funding from different sources and benefits into one budget, thus rationalising the number of assessments and reviews. On this premise alone, IBs should prove easier to navigate than DPs.

ii. Assessment: the process of assessing one’s needs was meant to become more akin to a self-assessment procedure led by users with support from care managers, with the amount of the IB reflecting relative need calculated by a standardised resource allocation system (RAS). Users were encouraged to define the outcomes and how the IB could best accomplish them.

iii. Use: users would be provided with greater latitude and flexibility to use their IBs in novel ways: not only could IBs be used to hire PAs (which was possible already with the DPs), they could be spent on mainstream activities and services, such as paying for social outings, and not just day care. This reflected one of the hard-core principles of the In Control initiative (Duffy 2004) and the personalization agenda (Needham 2011).

iv. Deployment: IBs could be received as a cash payment – in which case they would be denominated as DP – to be managed directly by users to purchase their own services or employ a PA; they could be held and managed by the LA on behalf of the user; they could be held and managed by a third party, such as a relative or a formal provider; or through a combination of any of the above options. A user could decide to have part of its IB managed by the LA and take the remaining as a DP to employ a PA, or pay for social outings.

v. Scope: although the Report clearly stipulated the need to pilot this new approach, it was clear that, if successful, IBs were not meant to be an opt-out, as DPs had been in the past. They were to become the standard way of delivering publicly funded non-institutional care.

Between 2006 and 2008, the IBs were piloted in thirteen LAs, of which eight provided IBs also to older people (see Glendinning et al. 2008 for details on the evaluation and setting up of the pilots), but midway through the IB pilot process the government decided to mainstream the benefit, now recoined as Personal Budget (PB), and to extend it nationwide albeit including only social care funding. Subsequently, PBs were to become the cornerstone of community care²⁰ in England as LA-supported care was to be provided through PBs to all new users from April 2011. PBs were to be extended to all eligible users and carers by April

20 PBs cannot be spent on residential care.

83

2013, preferably as a DP (Routledge & Lewis 2011; ADASS 2012). PBs maintained most of the features of the piloted IBs, as depicted in Table 3.2, most notably regarding its use and deployment and the possibility for PBs to be spent on equipments or mainstream goods and services. Nonetheless, while IBs had sought, and to a great extent failed, to pool together a wider range of funding streams, PBs would only be funded from adult social care (Moran et al. 2011).

Table 3.2 – Use and deployment options for Personal Budgets

Deployment of PB Agency Management/use behalf of the user with a home care agency and the LA manages payments to the agency.

Direct Payments (1) User chooses how the care needs are met

The user directly employs a PA and is responsible for payment of wages, taxes and

The PB is held by one home care agency under LA contract, akin to a current account of services, from which the user can draw to receive care. The day-to-day arrangements are agreed between the user and the agency.

Source: Adapted from ADASS (2010).

Notes: (1) The DP can be held by what is considered to be a suitable person (e.g. a relative) when the user lacks capacity. The LA may be appointed by the user to act as the suitable person, but this is different from LA-managed PBs.

(2) The payment of wages, taxes and insurance – the actual management of the money – can be delegated by the user to a support agency.

One option was to take the PB as a benefit managed by the LA, which would commission services on behalf of the user with the user’s preference taken into account however. A second option was to take the PB as a Direct Payment of cash, in which case the user would take responsibility for managing the benefit and for purchasing care services from home care agencies, employing a PA or a combination of both. When using the DP option to employ PAs, users would be responsible for the related social contributions and tax payments, as well as insurance (e.g. health, sickness and public liability) and fulfilment of general employment regulations (National Audit Office 2011). Finally, the PB could also be held and managed by a home care agency chosen by the user, with the latter maintaining responsibility over how and when the money was to be spent. Users were free to combine any of these options, so that, for

84

example, a user could use part of the PB to receive care services from a home care agency commissioned by the LA – LA-managed PB – and take the rest of the benefit as a DP to employ a PA.

In terms of agency and the dimensions of choice allowed, Table 3.3 provides an overview of the evolution of different choice mechanisms in England, from the earlier institutional consumerism reforms (quasi-markets), to DPs, IBs and the benefit that eventually was established in the wake of the IBs experiment: PBs.

Table 3.3 – Different choice mechanisms and dimensions of choice for home care Choice

As PBs were set to grow in importance, three issues became more prominent in user choice policy in England: whether outcomes under PBs would improve for older people; whether changes of the assessment and use of benefits would lead to the desired increase of take-up of PBs as cash, i.e. as DPs; and to what extent LA-managed PBs would fundamentally depart from institutional consumerism. What follows is a summary of the evidence on each of these issues, building on both the evaluation of IBs and more recent research.

85

On the subject of improved outcomes, evidence was somewhat mixed. On the one hand, there were consistent reports of better responsiveness achieved with PBs taken up as a DP (Newbronner et al. 2011; Hatton & Waters 2011; ADASS 2011; Sheikh et al. 2012). Older people voiced how PBs allowed them to better meet idiosyncratic and sometimes shifting needs, and arrange care around their daily routines and family life, i.e. they had control over when and what care was provided (Newbronner et al. 2011; Sheikh et al. 2012). The possibility to have control over the person who provided care – in the case of those hiring a PA – was also credited to have increased satisfaction with care received (Ipsos MORIS 2011).

Increased control, however, was not limited to those hiring PAs, for PBs had also helped users feel more empowered in their dealings with formal provider organisations, and this had contributed to their overall enhanced feeling of being treated with dignity and respect, a fact acknowledged by home care agencies themselves (Sheikh et al. 2012). Those who had previously received LA-commissioned care prior to the introduction of PBs reported improvements on how care was provided under PBs as well as an enhanced sense of control, even though it was unclear whether that was due to take up of PBs as DPs²¹ (Ipsos MORIS 2011).

On the other hand, however, the individual amounts of PBs provided to older people remained low²² (Glendinning et al. 2008; Moran et al. 2013; Jones et al. 2012). This severely limited the affordability of anything other than personal care and thus hampered older users from benefiting from the added flexibility and control that DPs could allow (Netten et al.

2012). Unlike younger disabled people, who welcomed and took full use of the possibility to spend the DPs on a wider range of services, older people also appeared to be more cautious with the use of DPs. The care plans of older people were thus mostly built around personal care and support with domestic tasks, rather than on activities such as leisure or socialising activities (Glendinning et al. 2008). The use of DPs to access mainstream activities was further hampered by professionals’ concerns regarding risk (Stevens et al. 2011; Moran et al.

2013). This had to do not only with using DPs for ends that tax-payers would deem defensible, but most importantly with professionals’ concerns about the health consequences of some of the choices made by DP users.

21 The sample included people receiving PBs as DPs and as LA-managed and 3^rd party-managed PBs; it is not clear to which of these groups those reporting improvements belonged to.

22 In the case of the IBs, certain streams of funding, such as the ILF, were not accessible to older people and thus could not be included in IBs for this user group.

86

On the issue of take-up of DPs, PBs had not substantially changed the picture and DPs remained confined to a minority of older users. The figures on Table 3.4 show that the number of users of PBs in general, and of DPs or DPs taken together with managed PBs in particular, has grown since 2009/10. One should not forget that specific targets were imposed for the expansion of PBs: 30% of all home care users by April 2011, expanding to 70% by April 2013. It is also clear, however, that take-up of PBs as DPs remained lower for older people than for other groups of users. A survey on PBs delivered in English LAs conducted by the Association of Directors of Adult Social Services (2011), reported that although the number of PBs was increasing, most of this increase was due to the managed PBs. Overall DP numbers had somewhat plateaued.

Table 3.4 – Distribution of PBs by type of deployment and user group

Type of deployment

provider-managed) 6,460 (52.2%) 1,425 (51.4%) 4870 (54.7%) 49,090 (83.1%) Mix of DPs and

provider-managed) 26,770 (60.2%) 5,645 (62.7%) 19,790 (63.0%) 201,855 (88.6%) DPs and Managed PBs 5,140 (11.6%) 745 (8.3%) 4,580 (14.6%) 10,440 (4.6%)

provider-managed) 40,045 (58.2%) 11,420 (65.6%) 35,190 (64.7%) 307,055 (87.5%) DPs and Managed PBs 8,750 (12.7%) 1,490 (8.6%) 7,745 (14.2%) 17,040 (4.9%)

provider-managed) 45,690 (56.2%) 17,480 (66.7%) 49,050 (64.8%) 353,630 (87.2%) DPs and Managed PBs 10,715 (13.2%) 2,145 (8.2%) 11,560 (15.3%) 21,780 (5.4%)

provider-managed) 48,910 (56.0%) 21,075 (67.8%) 54,495 (63.7%) 368,175 (86.5%) DPs and Managed PBs 11,285 (12.9%) 2,535 (8.1%) 13,255 (15.5%) 24,545 (5.8%)

87

The figures testify to the fact that some issues with take-up of DPs lingered. Across studies and surveys, older users consistently expressed doubts and concerns about lawfully spending DPs, and in fact some were not even aware they could take PBs as a DP of cash to employ a PA (Hatton & Waters 2011; Sheikh et al. 2012). In a study on the experiences of older users and those with mental health problems conducted by Newbronner et al. (2011), older users were wary of using their PB in an unlawful way or to overspend, even if there was little evidence of this actually happening. It did not help that users were not always aware of the exact amount of their PB or DP, or how it had been calculated in the first place (Needham 2013). Difficulties and uncertainties in managing the DP could therefore result in increased anxiety and lower psychological wellbeing among older users as the evaluation of the IB experiment had shown (Glendinning et al. 2008; Netten et al. 2012).

These practices should be understood in the context of budgetary constraints faced by LAs at the time of the expansion of PBs (National Audit Office 2011). LAs slowly but steadily began to restrict eligibility to Substantial and Critical levels of needs only, and sometimes to the latter only, meaning that only very frail older people or those with dementia were likely to be among the users of PBs (Care Quality Commission 2011)²³. The over-safeguarding attitudes of care managers regarding management of risk when users took-up DPs or demanded more creative care solutions were likely to be more evident in the case of frailer older users.

Furthermore, as reported by both users and care managers in the evaluation of IBs, lower DPs might simply be perceived as not being worth the extra responsibility and management burden to get the same care (i.e. personal care) that LA-managed care would deliver (Moran et al. 2013).

Finally, the above reviewed studies and surveys confirmed the fundamental issue with DPs and older people, as had already been pointed out by Glendinning (2008) in the wake of the IB experiment. This was also illustrated in the theoretical literature on the limits of the consumerism discourse concerning choice reviewed in section 2.3.3. The first contact of older people with the benefit is liable to take place in a moment of crisis or bereavement, following a sudden deterioration of health or loss of a spouse or carer. Decisions over deployment

23 In 2003, the eligibility criteria for access to social care was reorganised around four levels of need – low, medium, substantial and critical – partially in an attempt to provide some homogeneity in the eligibility rules across LAs (Lewis & West 2014).

88

options of PBs are often made at a moment when older people have to cope with changing circumstances in their lives and uncertainty about future needs.

Despite the prevalence of managed PBs amongst older people, there is a dearth of empirical studies on how users experience LA-managed PBs and how far they differ from institutional consumerism. What evidence exists from the viewpoint of users shows less positive outcomes (than those of DPs), and more standardised services being provided through managed PBs. These are accompanied by reduced awareness on the part of users on how the PB is managed and on choices available to them (National Audit Office 2011; Hatton & Waters 2011). Recent research shows LAs making efforts to adapt commissioning to deliver more choice alongside efforts to diversify supply of available services through market development initiatives (Wilberforce et al. 2012; Baxter et al. 2013). A study on LA-managed PBs by Baxter, Rabiee and Glendinning (2013), in particular, showed LAs still to be very much in control of how care was provided through LA-managed PBs. Some LAs have set up Individual Service Funds (ISF) which corresponded to PBs held by a 3^rd party, in this case home care agencies, but where users have greater freedom to define how and when care is provided directly with the home care agency. Subsequent changes can be negotiated without having to obtain prior LA approval.

Outcomes of PBs and take-up of PBs as either DPs or managed PBs therefore remain interconnected issues. DPs still seem associated with more creative ways to arrange care and these in turn are associated with better outcomes. In their analysis of the POET survey results, Hatton and Waters (2011) caution that the less favourable outcomes experienced by older users may owe less to old-age per se than to the more conservative use of PBs.

Although IBs had initially sought to tackle some of the barriers hindering the take-up of DPs and expand the dimensions of choice allowed to users, it is not clear that its successor, the PBs, have resolved those issues. Importantly, eligibility and available resources continued to grow tighter. It is contentious whether PBs provide enough purchasing power for users to get more than the bare minimum. By providing differentiated deployment options, PBs were supposed to create an enabling environment for choice for all seasons, i.e. tailored to the wishes of different users: DPs for users turned consumers or willing to become employers of care; or “managed PBs” for users craving for control but welcoming a helping hand from LAs or home care agencies in supporting their choices. It is not clear that the former is available to all or that the latter provides sufficient control to users.

89