SCIE research briefing 20: Choice, control and individual budgets: emerging themes

Published January 2007

What is the issue?

This section introduces and defines the scope of the briefing, and the topic.

A SCIE research briefing provides up-to-date information on a particular topic. It is a concise document summarising the knowledge base in a particular area and is intended as a 'launch pad' or signpost to more in-depth investigation or enquiry. It is not a definitive statement of all evidence on a particular issue. It is intended to help health and social care practitioners and policy-makers in their decision-making and practice.

This briefing is about the themes emerging from British and international literature relating to the development of individual budgets for adults currently receiving services in England. These include older people, people with learning disabilities, people with physical and sensory disabilities, and with mental health needs. The briefing is specifically intended as background to the evaluation of 13 pilot individual budget schemes running in selected sites between 2006 and 2008. It also offers practical messages for services users, carers and practitioners involved in the pilots or in developing similar schemes in their areas. It does not, of course, include any information or evidence from the current pilots: this will be covered by the forthcoming evaluation.

Since the late 1980s, policy in relation to the provision of care services in the UK has involved a series of linked initiatives, all based on the idea that the needs of the person requiring services should form the basis of a closely-tailored, responsive and flexible, personal package of care. For the purposes of this briefing, the following definitions of the systems will be used:

• care management - the development of individual care plans, based on detailed assessments by budget-holding care managers, taking full account of the service users' wishes and needs
• direct payments - where people, after assessment, are given the money to pay for their own social care, along lines proposed by them and discussed with their care manager
• individual budgets - a system which involves streamlined assessment across agencies responsible for a number of support funding streams, resulting in the transparent allocation of resources to an individual, in cash or in kind, to be spent in ways which suit them.

The implementation of 'care management', (originally 'case' management,) in the early 1990s was an important step in developing the spectrum of provision, which has now come to include direct payments and individual budgets. While the introduction of direct payments in 1997 was seen by many commentators as representing a step-change in the approach of providers, the systems listed above are not necessarily mutually exclusive. Rather than involving a complete break with pre-existing services, the introduction of consumer-directed care can be seen as an effective way of reforming them (1). All may co-exist, within a framework of rights, along a continuum of choice and inclusion with key decisions controlled by the service user.

Similar, but not identical, trajectories in the developments of care systems in other countries have resulted in initiatives called 'consumer-directed care', 'self-directed support', 'personalised allocations' and so on. These are commonly a response to a demand for autonomy on the part of service users, but may also be driven by traditions, politics and policies which are very different from those which apply in the British context. A feature of many of these systems - particularly in North America - is the provision of support to individuals wishing to make use of them. The support may be of many different kinds, and focus on access to information and services, financial and management issues, developing community resources and so on. People providing this support are often known as 'brokers', and may be independent or attached to service providers, paid or voluntary.

Why is it important?

The Government has linked the development of individual budgets explicitly to the lessons to be derived from experience of direct payments (2). There is also experience of operating analogous schemes from the European Union (EU), North America, New Zealand and Australia which may provide valuable lessons.

The origins of these developments make it important to examine how schemes have been implemented in comparable contexts in order to ensure that policy innovations meet their objectives of improving the quality of life of service users and their carers, and to support policy coherence. Many commentators have noted that the impetus for schemes of the kind discussed here derive from a complex blend of imperatives: a clear voice from the independent living and inclusion movements, demanding an end to social exclusion, stigma and second-class citizenship; a sense among governments that the traditional European welfare states can no longer cope with ever-increasing demand; and a trend towards personalised, tailored responses to need which - it is hoped - will both empower the consumer and perhaps save the state money.

Direct payments in the UK, and consumer-directed payments elsewhere, have primarily been used to employ a new and growing group of care workers - personal assistants. It is important that questions about the pay, employment conditions, qualifications and skills of this important group should also be examined in the light of experience.

Research knowledge

The limitations of the research

The research literature overall contains limited information about the cost-effectiveness of schemes, the relative quality of services provided, or questions of equity. The experience of black and minority ethnic services users is underrepresented. Evaluation criteria are primarily linked to consumer satisfaction, growth in self-esteem and/or sense of empowerment in most studies. Issues of risk and risk management are tackled by a few. Detailed work in relation to the UK direct payments scheme is still in progress (3). This survey and the evaluation of the first two years of the In Control project (4) are expected to provide evidence about the implications of consumer-directed schemes for practitioners in England.

An important limitation on the use of the international research for informing the development of the new English scheme is that analogous schemes from other countries vary along a number of different dimensions:

• social welfare philosophy and tradition in which they are set
• source of funding - social insurance, taxation
• eligible group - Canadian schemes initially focused on children and young people with learning disabilities, for example (5); the Swedish, on adults with physical disabilities (6)
• detailed objectives - the Flemish scheme was aimed at reducing the use of expensive residential care (6); the LAC scheme in Western Australia, at combating the fragmentation of service provision in remote rural areas (7); consumer-directed care in the US has been directed partly at solving a shortage of long-term care staff (8).

With these provisos, it is safe to say that common themes emerging from the literature are suggestive.

Consumer views

The opinions of service users in many countries have been canvassed about their experience of consumer-directed care. Responses vary of course according to scheme and service user group, but a high proportion of reactions have been positive to the idea of consumer-directed care as an option, given the right kind of support. A few studies have looked specifically at the experience of black and minority ethnic service users. Results are mixed, with some recipients finding the flexibility of schemes enabled them to access culturally-appropriate services; while others found the barriers to accessing the schemes even higher for them than for other service users (46). Consultation with recipients - including, especially, older people - has also found that a major concern is the quality of advice and support available to people using direct payments or individual budgets (10, 47).

The systems which appear to be most appreciated by recipients are those which 'safeguard their self-determination', are linked to a clear local support strategy and are routed through organisations of disabled people (30). Swedish recipients have formed an interest group which gives a quality stamp to registered personal assistants, while user cooperatives offer to take over the employment responsibilities of new recipients who open an account with them (6).

The interesting link between take-up of direct payments by older people, and people with disabilities (see below) (16), which may suggest activity by local organisations, and evidence of the role played by local voluntary organisations and peer advice in stimulating take up in general (20), all point to the importance of service user networks in a locality.

Implementing innovation

Attempts have been made to analyse the slow, patchy growth of direct payments in the UK, and the apparent reluctance of councils to promote them has been the focus of much of this analysis (9-16). Contributory factors in England have been identified with:

• the need for cultural change, leadership, better information and training
• reluctance to relinquish power, and fear of deskilling and job losses
• the prevalence of risk-averse practice
• perceived or real difficulties about establishing consent
• concern about costs - especially start-up costs
• lack of a strategy for, and experience of user involvement in services
• uncertainty about the capacities of service users, and paternalism.

One detailed analysis of the literature about both roll-out and take-up has set out to unravel the numerous and complex underlying causes of slow growth, identify gaps in the literature and develop a conceptual framework for future research (11). This proposes that future studies should use a more sophisticated means of analysing implementation structures and networks, and that the implications for one form of implementation or another should be investigated in relation to the full range of potential recipients.

Continuing research by the Personal Social Services Research Unit (16) suggests that the geographical variability noted in the Commission for Social Care Inspection' s Performance Assessment Framework analysis for 2004/05 cannot be simply explained in terms of council policy preferences and social work 'behaviour', but is also clearly linked to a range of local factors both within and beyond their control. In respect of factors that may be within local authority control, the findings suggest that local authorities that are generally committed to the provision of intensive community care provide more intensive direct payments packages. On the other hand, it appears that local authorities performing 'best' according to current Commission for Social Care Inspection performance standards tend to spend proportionately less on each direct payment recipient than 'poorer' performing authorities with fewer recipients.

The research also throws interesting light on the variation of take-up within local areas, by different groups of service users. There is evidence of a direct link between take-up of the scheme for people with disabilities in a given locality, and take-up by older people suggesting mutual influence between user groups at that level. Another important finding is that, while about three quarters of responding authorities reported making use of the provision for making one-off direct payments, very few of these were for improving access to education or employment as a means of promoting social inclusion.

How can these barriers to take-up be effectively overcome? The above studies (11, 16) argue for a much more sophisticated attempt at understanding the local dynamics of implementation, before remedies are proposed. From current evidence, we can say that the growth in take-up by recipients with learning difficulties has been successfully promoted by the activity of consumer-directed and voluntary organisations such as Values into Action (17), whose carefully targeted guidance and promotional material has influenced both service providers and service users. Parents of children and young people with disabilities have been very influential in the development of schemes both in Canada and the USA as well as in the UK (18, 19). There is also evidence that the provision of both peer and professional support at local level is helpful (20).

Carers

Many people employed as personal assistants in EU schemes are drawn from the ranks of existing informal carers, including spouses. In the UK, service users have been discouraged from using direct payments to employ close relatives who live with them, except in exceptional circumstances. However, In Control has found that in practice such exceptional circumstances do often exist, that this stipulation is causing few problems in the development of individualised budget packages, and many individual budget recipients do in fact employ relatives.

In the British context, carers may also be eligible for direct payments instead of services, following a carers' assessment under the Carers and Disabled Children Act 2000; but very few have received payments. The benefits of autonomy and flexibility which many service users appreciate about direct payments are just as relevant to carers - perhaps, especially to young carers - and many of the barriers reported are the same (39).

Models of support

The kinds of support that are needed are broadly identified as support in:

• accessing the scheme
• managing money, budgeting and accounting
• accessing the required services
• employing and managing staff.

Support may be independent or not, and definitions of 'independent' vary. A survey of English social services departments in 2004 found that nearly all respondents said that they funded local support schemes to help applicants and recipients of direct payments, and only ten of these were said to be exclusively in-house. The majority were described as independent; a few said that their support schemes were run by users of direct payments (21).

In 2000, limited practical management support was provided for recipients of consumer-directed schemes in Germany and Austria, and none in France. Some US states offered training, education, and funded peer support. Lists of potential workers and other providers were sometimes supplied (8). An evaluation of the Canadian Individualised Quality of Life project, which provided 150 individuals with learning difficulties and their families in Ontario with personalised planning, support and funding from 1997, found that it was the independence of the planning support which made it especially valued and effective (5). This kind of support has become known as brokerage.

Brokers

Complete independence from the agencies which fund and which have hitherto provided services has been identified as the essential characteristic of the brokerage model (22). The values of brokerage are seen as linked - not just to accessing specific services - but to a vision of full citizenship and quality of life to which recipients are entitled. The resources tapped by brokerage are not only the traditional pool of services conceived and controlled by authorities, but draw upon the family, the local community and the individual recipient to arrive at new solutions to individual needs.

When ten of the most promising initiatives from Canada, the US and Australia were reviewed in 2003, the most successful were identified with 'infrastructure supports separate from the service system, and a facilitator/broker role different from case management' (23). No compelling research evidence was described which demonstrated that such supports had a direct association with better outcomes for service recipients and their families.

Service brokerage has been explored in and adapted to the British context, and has become an integral feature of the self-directed support model promoted by the In Control programme. In this context, brokerage is distinguished from the continuing supports which a recipient may purchase - such as the services of a personal assistant, and is interpreted flexibly to cover advice, and administrative support, if needed, from a range of locally-identified organisations (24).

The development of brokerage has been one response to the difficulties experienced by some recipients in coping with individualised funding schemes; radically reducing their complexity could be another. A recent discussion paper by the Commission for Social Care Inspection (CSCI 2006) outlined some of the many questions which remain about brokerage in the British context: about its precise role (or roles); about recruitment, costs, training, pay, employment status and so on. It recommends further exploration, testing and evaluation (25).

Personal assistants

From the beginning, a large proportion of personalised budgets has gone towards employing personal staff whose roles and functions are hard to define, precisely because of the very flexibility they offer. These form the growing army of personal assistants, domestic supporters or care assistants. A significant part of the literature about developing schemes which increase choice and control, and empower service users has been concerned with the recruitment, management, skills and availability of personal assistants. Throughout the world, personal assistants are overwhelmingly female, and often paid low wages. There is evidence in the EU that personalised budgets that are set too low can lead to the development of an unregulated market leaving both care users and workers at risk. Personal assistants may work unsocial hours, which can fluctuate according to the care needs of their employer, have little in the way of a job description and receive very little support in what can be a demanding job (34, 35). Yet they are the key to the success of many schemes.

Some personal assistants who are not related to care users have been found to appreciate the part-time and flexible character of the job, while others see taking a post as a personal assistant as in some way transitional (36). A recent study of job satisfaction among the employees of direct payment users in Staffordshire found a mixed picture. The pay and conditions of personal assistants were poorer than those of home care workers employed by the local authority; but they reported higher job satisfaction and less stress than home care workers (37).

People prefer to train their own personal assistants. Where a trained cadre of assistants has been developed, this has led to the development of a new profession which - while arguably providing a more thoughtful kind of care - has not met with approval of all care users (34). Studies into barriers to take-up of direct payments in England, Scotland and Wales have all found that difficulties in finding personal assistants and anxieties about organising their employment have been high on recipients' lists of challenges (38). Some countries have tried to overcome these barriers by providing lists of approved personal assistants, setting up voluntary organisations offering registered personal assistants from a pool, or organising their employment and payment through statutory agencies. These schemes have on occasion given rise to angry protests by some care users, who see them as an attempt to 'recolonise' services (6).

Costs and allocations

Information about the costs consumer-directed schemes is patchy, and difficult to compare across countries. Virtually every analogous scheme in the EU has been based on an underestimate of costs, at least partly due to unpredicted demand and previously undetected unmet need (6). The Swedish scheme was on the point of collapse by the end of 2004, because of ballooning costs and perceived fraud. The Flemish scheme was unable to meet even a fraction of demand, and was criticised for lack of transparency, and long waiting lists. In 2005, the possibility of capping the budget for the new Dutch scheme to halt the upward drift of expenditure was under vigorous political debate, and from 1 January 2006, coverage was altered to eliminate much-valued household help (unless part of a package), and transfer responsibility for it to the municipalities. Germany has protected the financial health of its scheme by building in extensive cost-containment mechanisms; and a review of schemes for older people in the Organisation for Economic Cooperation and development (OECD) area has suggested that confronting the need for cost-effectiveness from the start may help to promote their development (26).

There are examples from the British experience of direct payments costing less than previous care packages, but commentators warn about the need for start-up costs. A review of consumer-directed care in the US found that costs were not uniformly nor fully accounted for across evaluations, some of which failed to take account of family care, uncompensated out-of-pocket expenses, unmet need and un-delivered care under traditional schemes, and start-up costs among new ones (27). A small study of one Australian scheme of individualised funding has, conversely, found high transaction costs and much unmet need (7).

In 1994, Pijl (36) identified the following methods of transferring funds to recipients:

• a lump sum, which the recipient can use in any way
• a budget made directly through the recipient, or through a care manager, to be spent in a prescribed way, and accounted for in detail
• reimbursement of expenditure, with or without a ceiling
• vouchers for specific services
• a credit system, involving withdrawals via a card.

Precise allocations to individual recipients vary tremendously across countries and states within countries (6, 8, 23, 26, 28). Some EU schemes arrive at a rate based on the assessed level of need for hours of support, based on or near a minimum wage level. Others take into account the cost of alternative (for example, residential) services. Schemes which offer a choice between receiving cash or services usually 'discount', i.e. offer less in cash than the full cost of the alternative service. But, in general, cash remains a popular choice.

Case studies of person-centred schemes in four US states (29) found that in Wyoming, for example, a system has been developed which assigns a personal budget to an individual using statistical methods to identify consumer-centred factors that demonstrably affect the costs of supporting individuals in the community. In Wisconsin, the budget is set using a 'triangulation' process that considers factors such as historical costs, personal income, existing support and support needed.

The In Control programme aims to provide clear and piloted models of consumer-directed individual budgets in the English social care context. In one such model, participating local authorities helped develop resource allocation by means of four steps:

• identifying the price of major, typical service elements
• identifying typical service packages
• examining price and distribution of typical packages
• determining funding for the existing system, on to which assessment criteria can be mapped.

Three criteria were used:

• level of need - low, medium or high
• family situation - living in family home or not
• complexity - yes or no.

These gave rise to 12 possible permutations. Initial findings from the pilots revealed that the distribution of funding packages was clustered, typically involving six levels to match existing allocations; the relative 'generosity' of local levels appeared unrelated to local economies; and that the approach could involve some efficiencies, but would provoke increased demand (24, 30).

Some start-up costs arise from the need to identify clearly and disaggregate existing funding. The individual budget pilots underway in England are based on the principle that assessed entitlements from a number of income streams should be virtually pooled, in order to arrive at a transparent figure for the budget available to meet a given applicant's needs. No specific evidence has been identified from the international literature which throws light on the issues arising from combining funds in this way, at the level of the individual. The difficulties encountered in combining funds, towards common goals, at the level of the institution, may be instructive (31, 32). In particular, messages about allowing time and money to enable trust and capacity to develop; clarity about legal and technical matters, including ring-fencing, accountability, service level agreements and employment issues; and the need for 'champions' within agencies and sectors to take developments forward may all be useful.

Quality and risk

The idea that older or vulnerable care recipients may be put at risk by seeking personal assistants in the open market seems not to be borne out in practice. Remarkably, no real incidence of abuse or neglect was found by quality evaluations of the Austrian Cash Allowance for Care schemes nor the Cash and Counselling pilots under Medicaid in the US (27). A small study of the role of personal assistants in the north west of England did find evidence of dishonesty, discourtesy, incompetence and abuse of all kinds. This study recommends that negative feedback should be sought, and taken seriously (33). There is also evidence from here and other studies that the employment rights and conditions of work of personal assistants may be insufficiently protected.

This should be seen in the context of evidence about the abuse of vulnerable people in some institutional settings; and none of the experiences described is a reason for closing off self-directed care opportunities. But they do suggest that better monitoring, better support for care users and personal assistants, clear contracts and simple job descriptions which set out what care users expect of their assistants, better pay and greater transparency about available funds should all form part of local strategies.

Consumer satisfaction and reported growth in autonomy have been the most frequently reported outcomes of consumer-directed care (6, 8, 19, 26, 38, 41-43). In the face of professional reluctance to see consumer satisfaction as an adequate evaluation criterion, research in the US has called for a more complex range of consumer-centred outcome measures (44, 45).

Stimulating services

The emergence of personal assistants to meet the new demand is the most marked development, followed by agencies and individuals specialising in supporting budget recipients: brokers, advocates, and financial intermediaries (5, 6, 8, 23, 26, 34). In Sweden , some large companies have woken up to the profits to be made from the generous budgets available; and in Flanders, Belgium several private personal assistant temping agencies have grown up. In the more heavily-regulated Dutch system, service providers are essentially still employed by the state, to the dismay of some users (6).

In many systems, individual budget recipients may use their allocation to'purchase' formal services; but evidence from Germany and Austria suggests that these allowances have little impact on the development of the formal service sector. A different kind of impact could emerge if recipients begin to combine their purchasing power, and collaborate to fund the kind of setting or activity they want. In the US where market development has been slow some expect it to grow in tandem with the development of local networks of disabled people, and local independent brokerage capacity (40).