|Disability Studies Quarterly
Winter 2005, Volume 25, No. 1
Copyright 2005 by the Society
for Disability Studies
Personal assistance policy in the UK:
What's the Problem with Direct Payments?
Colin Barnes, Debbie Jolly, Geof Mercer, & Mark Priestley
Abstract: Across the United Kingdom (UK), the development of personal assistance through the policy of Direct Payments has seen a varied pattern in its success since its implementation in 1997. In some areas, local authorities have been reluctant to develop schemes, whereas others have shown a more positive commitment to ensure widespread access has been made. This article offers an overview of research in this area and reports on initial findings from a major UK wide study on Direct Payments being carried out by researchers at the Universities of Edinburgh, Glasgow and Leeds and funded by the Economic and Social Research Council (ESRC). In doing this, a series of conflicts will be set out, which have affected the move towards securing independent living for disabled people in the UK.
This article discusses some of the main policy themes and issues that have arisen in relation to personal assistance for disabled people in the UK. These are drawn from preliminary findings from an ESRC funded study Disabled People and Direct Payments: A UK Comparative Study being carried out from January 2004-December 2005. The study sets out to explore some of the key factors and conflicts that have influenced patterns of take-up of Direct Payments and employs a multi-method strategy. Discussion in this paper focuses on findings from the baseline statistical analysis and policy review, with subsequent work drawing on key informant interviews, focus groups, and targeted case studies.
Figures referred to in this article are taken from the statistical analysis. All figures are based on publicly available statistical breakdowns as of February 18, 2004. They include all Direct and Indirect payments recorded by relevant local government authorities and non-disabled people such as "care givers" who are eligible for Direct Payments in England, Wales and Northern Ireland. Information has been obtained from the Scottish Executive, Direct Payments Scotland, the Department of Health (England), the Department of Health, Social Services and Public Safety (Northern Ireland), the Local Government Data Unit, (Wales), and the National Centre for Independent Living.
Over the last two decades, the availability of state-funded cash payments for personal assistance in the UK has been characterized by inequitable access and a largely confused policy framework. In the early-mid 1990s, sporadic agreements between local authorities and disabled people emerged in a number of areas that allowed the receipt of cash rather than services. Around the same time, the "Independent Living Fund" (ILF) was introduced by central government, as a temporary measure to allow disabled people classified as having high support needs to purchase their own services. From April 1997, Direct Payments legislation eventually formalized the availability of cash payments from local authorities for designated services. This meant that disabled people assessed as being "in need" of community care, and living in areas adopting the scheme, would be able to receive cash instead of services.
However, despite the on-going support for policy from the UK disability movement, current figures estimate that just over 10,000 people are receiving Direct Payments across the UK (see Riddell et al, forthcoming for a fuller appraisal of the figures).
England has the highest number of users (9700) and represents 90 percent of the UK total. Although the total population in England is significantly higher than other parts of the UK, figures do present a mismatch with the percentages of persons reporting a "long-term disability or illness." Indeed, Wales, Northern Ireland and Scotland all score proportionately higher than England (standing at 23.5 percent, 22.5 percent and 20 percent respectively, compared with 18 percent in England). It should of course be emphasized that eligibility to Direct Payments would be restricted to a limited proportion of those recorded in this category, (through the community care assessment system), yet it is clear from these figures that there is an inequity in the geographical take-up of policy, with significantly more Direct Payment users in England relative to population.
As discussion will show, much of the impetus for policy has been based in southern English authorities. This paper will therefore seek to highlight some of the key conflicts and issues underpinning disparities and outlines why securing access to Direct Payments for personal assistance has been so fraught with problems in many parts of the UK.
Indirect routes to personal assistance: the development of local alliances
Prior to the formal adoption of the Community Care (Direct Payments) Act in 1996, confusion surrounded the legality of Direct Payments across the UK. In England, Wales and Northern Ireland, it was stipulated in the 1948 Social Security Act that a local authority could only provide services and not make cash payments. The position differed slightly in Scotland, where provisions in the Social Work (Scotland) Act 1968 allowed cash payments to be made in "exceptional circumstances" (see Pearson, 2000 for more details). However, prior to the 1996 Act, the impact of this ruling was limited, with little knowledge of the ruling amongst local authorities and only one example of payments being made through this route (Witcher et al, 2000).
During the 1980s and early 1990s, several local authorities sought to overcome the legal restrictions by administering payments indirectly to disabled people through third party voluntary organizations or a local independent trust. These schemes were largely found in southern English areas. Only one example was found in Scotland with no similar moves in Northern Ireland and Wales. In line with the push towards individualized funding and personal assistance schemes emerging in Canada and the United States from the early 1980s, an important feature of policy development at this time, was the allegiances formed between groups of disabled people keen to change their service provision, and local authority planners sympathetic to supporting independent living values.
One of the first schemes was developed in the local authority of Hampshire in the south of England, where a small group of disabled people persuaded the local authority to allow them to live independently by paying for personal assistance with money previously set aside to fund their residential care (Zarb and Nadash, 1994). It was agreed that the money could be allocated to the residential home, which in turn, made payments available directly to each individual on behalf of the local authority. Whilst individual support for cash payments rested on the enhanced control and independence secured by employing personal assistants, the local authority's co-operation focused on the potential for a new "marketized" model of service delivery offered by the change. Hence, it was the promotion of consumer markets, individual "choice" and "cost efficiency" enabled through cash rather than service provision that appealed to the Conservative Party administration that controlled the local authority. Indeed, this replicated the wider pattern of social policy restructuring being pursued in the UK and elsewhere during this time.
As Evans and Hasler (1996) note, throughout this period, development of these types of indirect payments was slow, with only a few areas adopting the approach. Most areas were not keen to take them on because they considered them either too risky or were wary of "handing over control" to disabled people. Consequently, where payments did emerge, the rationale for change strongly reflected collective negotiation and lobbying from disabled people and local authority planning views on service delivery where Conservative-run administrations were keen to produce a more market-based approach. This established a concentration of schemes largely in authorities in the south of England where Conservative councils were more prominent.
Indirect routes: other forms of payments for personal assistance in the UK
Although at this time local disability activism proved to be an important factor in establishing cash payments, other routes to personal assistance in the UK were also in evidence. These originated from wider changes implemented by central government amidst a reorganization of social security support for disabled people and the development of community care policy from the late 1980s (Glendinning, 1992; Berthoud, 1998). In brief, this saw the launch of the Independent Living Fund (ILF) by the UK Conservative government. The ILF was set up in co-operation with Disablement Incomes Group (DIG) – a national campaigning organization of disabled people - to compensate for the loss of additional domestic payments made to disabled people removed by social security reforms. Concerns were raised (Glendinning, 1992) that some disabled people would be forced to enter residential care – an outcome that clearly conflicted with the push towards "care in the community" being promoted at the time.
The launch of the ILF was initially seen as a temporary measure to cover gaps in support for disabled people prior to implementation of Community Care legislation in April 1993. However, its importance was perhaps more symbolic, in that it represented the first large scale opportunity for disabled people in the UK to use cash for personal assistance, rather than relying on services provided by local authorities or families (Zarb and Nadash, 1994).
At the time of its introduction, the ILF attracted criticism from a number of disability groups and opposition members of parliament, angered by the replacement of legal entitlements to benefits with discretionary awards from a charity (Wood, 1991). Indeed, use of the term "independent living" in this context was in itself questionable in that the ILF was being brought in amid a broader shift to "community care." From this stance, the principles of community care policy with its dominant focus on "professional assessment" of disabled people's "needs" (Griffiths, 1988) was seen as incompatible with long term goals of choice and control over who and how support for disabled people is provided (Hasler et al, 1999). This links in with wider criticisms of how the concept of "independent living" has been misrepresented by some health and social service professionals in the failure to embrace the principles and practices set out by the Disabled People's International Movement (Barnes, 2003).
However despite these concerns, implementation proved to be remarkably successful and highlighted a number of benefits for disabled people (Kestenbaum, 1992) and demand greatly exceeded government projections. Furthermore, the appeal of the ILF for local authorities reluctant to embrace indirect payments was that funding came from central government budget and made no impact on the structure of council funded services.
In line with the experiences of individualized funding schemes in Canada (Roeher Institute, 1993) and elsewhere (Lord and Hutchison, 2003), persons using ILF highlighted enhanced choice, control and flexibility, when compared with direct service provision (Zarb and Nadash, 1994; Kestenbaum, 1993). Hence, as a result of the ILF's popularity, government plans to close the fund were reconsidered and it was replaced with two – albeit far more restrictive – new charitable trusts. Existing users continued to receive payments through the Independent Living (Extension) Fund and the Independent Living Fund 1993 (ILF'93) was run alongside services provided or purchased by local authorities.
Since its revision in 1993, the ILF'93 has primarily been used to top-up local authority services for people living in their own homes where the costs of services would otherwise exceed the price of residential care. However, restrictive changes brought in at this time dramatically reduced user-take-up so much so, that by 1994 fewer than 200 people in the UK were benefiting from payments and the national budget of £4 million was under spent (Kestenbaum, 1995).
Moving towards Direct Payments
The dramatic reduction in the number of new ILF users with the shift to the 1993 fund meant that the momentum for UK wide uptake of cash payments had lessened once again. Elsewhere, it was becoming apparent that the political affiliation of local authorities together with the campaigning role of local disabled people was a significant relationship in the establishment of indirect payment schemes. Whilst in local authorities like Hampshire, a successful working allegiance between disabled people and Conservative members of the council who favored a more consumerist framework of support services had been achieved; in other areas these partnerships were less easy to facilitate (Priestley, 1999).
In other parts of the UK, progress with indirect payments remained patchy. In Scotland, most payments were made through the ILF with occasional examples of alliances between disabled people and local authorities. Indeed, there appeared to be widespread confusion within local authorities as to their availability and the type of approach offered (Witcher et al, 2000). In Northern Ireland, progress was especially slow. Whilst a number of people employed their own staff using ILF money, there was an absence of grassroots support for personal assistance payments from disabled people and limited demand to extend them more widely (NICOD, 1999).
Therefore by the mid-1990s, the disability movement was becoming frustrated with the restricted access to the ILF and limited willingness from local authorities to make payments from their own social service budgets. Indeed, the availability of indirect payments was looking increasingly precarious and a number of legal challenges were put in place as the then Department of Social Security took action over indirect payments being made by local authorities. Although the cases were won, the actions raised the profile of these types of cash payments, thereby instigating the needs for a more formal legislative path to be developed.
Policy on the statute: the 1996 Community Care (Direct Payments) Act
Prior to securing Direct Payments legislation, a number of issues were outlined as to why policy would not be formally adopted by the then Conservative Government (Pearson, 2000). These centered strongly on "cost efficiency" and "accountability" of public spending together with wider concerns that personal assistants might exploit or abuse disabled people (Campbell, 1996). Such concerns proved significant obstacles to reform and progress with securing a Bill in Parliament was frustratingly slow (Glasby and Littlechild, 2002).
Given the reluctance by the Conservative Government to proceed with legislation, the main umbrella organization of disability campaigning, the British Council of Disabled People (BCODP), changed tack and contracted the Policy Studies Institute (PSI) to carry out research to highlight the cost implications and effectiveness of Direct Payments (Zarb and Nadash, 1994). Unsurprisingly, findings showed much higher levels of satisfaction for personal assistance users and critically, for a government focused on cost efficiency issues, the study found that support financed by payments was on average between 30 and 40 percent cheaper than equivalent service-based provision. In emphasizing these findings, the research became an important base to challenge the Government's position. Indeed a week after its publication, it was announced that legislation for Direct Payments would emerge in the following session of parliament.
The original policy guidance for Direct Payments (Department of Health, 1997/National Assembly for Wales, 1997/Northern Ireland Order 1996, No. 1923/Scottish Office, 1997) set out the framework for policy implementation from April 1997. Initially, this permitted local authorities and health and social service trusts to make cash payments to disabled people between the ages of 18 and 65 to purchase services on their own behalf, rather than using those supplied and organized for them. In order to qualify for a Direct Payment, an individual has to be assessed as requiring a community care service. A key feature of the legislation was its position as enabling legislation. This presented local authorities with the option to allocate Direct Payments or maintain existing modes of service provision. As Pearson (2000) notes, the policy model fit in with wider shifts to locality planning of services across the spectrum of UK social policy in the 1990s. Therefore, the framework for Direct Payments linked in with the promotion of "local care markets" developed through the 1990 NHS and Community Care Act. This centered on promoting voluntary and private sector organizations in the delivery of key social services.
Promoting personal assistance?: Initial take-up: 1997-2000
The impact of the early years of Direct Payments across the UK may at best be described as limited. Whilst local authorities with established indirect payment schemes used legislation to formalize and develop existing practice, elsewhere the picture was far less positive and presented acutely different patterns in take-up across the UK.
Indeed, progress with Direct Payments in England shows a marked contrast with the rest of the UK. In 1998, it was reported that just over half of English local authorities offered payments to 1404 users – 95 percent of them were to persons defined as having physical and sensory impairments (Auld, 1999). This extended to 80 percent coverage across England and Wales in 2000, with 3612 users (Jones, 2000). Again, Jones' survey highlighted the predominance of users with physical impairments and found that a number of local authorities excluded access to persons assessed as having learning difficulties or mental health problems. Similarly in line with the earlier pattern of indirect payments, there was a clear regional pattern to take-up, with the majority of payments being offered in the south of England and the least in central and northern areas alongside Scotland, Northern Ireland, and Wales.
The first major study of Direct Payments in Scotland was carried out by Witcher, Stalker, Roadburg and Jones (2000). This research, commissioned by the Scottish Executive, confirmed the limited availability of Direct Payments, with only 13 out of the 32 local authorities having fully operational or pilot schemes, and a total of 143 users. Although figures have since risen (this will be returned to shortly), take-up is proportionately lower than in England. However, findings from Witcher et al's (2000) study highlighted a similar imbalance in impairment groups to England, with access for users from black and minority ethnic communities also shown to be disproportionately low.
Many of the barriers to developing Direct Payments in Scotland have been explored in more depth elsewhere (Pearson, 2004a), where it is argued that resistance to widespread policy development has focused on two main issues. This has centered primarily on the prominence of an anti-market discourse from policy planners, whereby Direct Payments have been viewed by some senior personnel as part of a broader drive to privatize social care services. Indeed, resistance to the New Right drive to consumerize welfare services has been traditionally felt more strongly in Scotland, where a stronger allegiance to state-provided services and professional power, has featured prominently in many areas of social policy (Riddell et al, 2001). In addition, a second major problem – a pervading ignorance surrounding the principles of independent living in many social work departments – has prevented many staff from actively promoting policy to users. These issues will be returned to later in this article.
In Northern Ireland, progress with Direct Payments at this time was especially slow. Whilst there were a number of disabled people employing their own staff using money from the ILF, there did not seem to be any significant demand for Direct Payments from disabled people themselves (NICOD, 1999) in contrast with other parts of the UK (Acheson, 2001). Some of these issues were picked up in a research project run by the voluntary sector organization, NICOD (NICOD, 1999). The project was set up with a view to recommend a model of best practice for independent living and personal assistance and included pilot payments for around 10 people with physical and sensory impairments across the Province. Like other early research discussion of personal assistance, the NICOD findings echoed overwhelming user support for payments. However, it was clear that disabled people involved in the project had received no information about the availability of Direct Payments prior to their involvement in the pilot. As one participant commented, "it's one of the best kept secrets in Northern Ireland" (NICOD, 1999, p. 49).
Early policy development in Wales also showed a minimal impact. Only limited information about Direct Payments was documented at this time and much of the literature (Glasby and Littlechild, 2002) tends to merge details with England. A more in-depth appraisal of Direct Payments at this time, therefore, only revealed patchy coverage (Stainton and Boyce, 2001) and replicated the pattern of take-up amongst impairment groups elsewhere in the UK.
Expanding access?: exploring the impact of policy change since 2000
As indicated, coverage of Direct Payments across the UK in the early years of policy implementation received only limited success. It is clear from a preliminary analysis of data for the ESRC research project that Direct Payment receipts have increased since 2000 (Riddell et al, forthcoming). Northern Ireland has increased its payments by the highest percentage with a 74 percent increase from 2000-2003. However as the figures show at the outset of this paper, overall take-up remains low. There also remains a clear imbalance between user groups. Certainly in the early years of policy implementation, access was dominated by persons with physical impairments. More recently attempts have been made to increase the numbers of other users – notably, early resistance in offering payments to persons assessed as having learning difficulties (Holman and Bewley, 1999) or mental health problems (Ridley and Jones, 2002) is showing some signs of lessening, but figures remain low. Likewise, concern has been expressed at the low uptake of policy access to all groups within black and ethnic minority communities (Vernon, 2002).
Therefore, discussion now shifts to explore some of the broader policy changes set out by government and the related devolved UK administrations to promote payments more widely, and the impact to date of these changes by examining some of the key themes picked up in the research studies.
Primarily, it is clear from policy initiatives from the New Labour Government and the devolved administrations in Scotland, Wales and Northern Ireland, that there is a strong commitment to extending Direct Payments and to a more diverse user population. Indeed, policy has been presented as an integral part of the modernizing agenda for social care and social inclusion programs (Department of Health, 2003a; Scottish Executive, 2003). As a result, a number of changes have been made to the original policy framework.
This began in 2000 with the expansion of Direct Payments to persons over the age of 65. Older people were initially excluded from the legislation to limit the number of users, thereby reflecting concerns from the then Conservative Government that policy implementation would lead to excessive rises in public spending (Means and Smith, 1998). However, since then Direct Payments for older people have been presented as a key part of the modernizing agenda for social care (Department of Health, 2001).
To date, there is some evidence to show that the extension of Direct Payments to older people has been well received. Yet whilst qualitative studies like Clark, Macfarlene and Gough (2004) have highlighted positive outcomes for individuals moving to this type of support, coverage and access remains fragmented. England for example, has seen an 81 percent increase between 2000 and 2003, resulting in 2700 users, whereas estimates for Wales and Northern Ireland stand at 20 and Scotland with 86 percent, has the highest growth rate of all in the UK.
The focus on extending Direct Payments to a wider user population has also been addressed in a number of subsequent pieces of legislation which have, in turn, instigated a different pattern of user access across the UK. Legislation has tended to be led by the Department of Health (which holds responsibility for policy change in England). This was initially addressed in changes outlined in the Carers and Disabled Children Act 2000, which gave payment access to parents or guardians who look after disabled children, 16 and 17 year olds and "carers" aged 16 or over. Expansion was followed by a shift to mandatory implementation of Direct Payments across England and Wales from April 2003.
The impact of these changes to these groups has been less acute than for older people. In England, figures available for all these groups are low and coverage variable, with "young carers" served by just three local authorities (totaling 5 users), 16 and 17 year olds by 10 authorities (totaling 10 users) and "carers" by 18 (totaling 18 users). Elsewhere in the UK, the pattern of access still remains limited – there are currently no recorded figures for payment use amongst 16 and 17 year olds, "young carers" and parents/guardians of disabled children. Moreover, legislative change has included some important differences.
In Northern Ireland, changes to the original Act have been laid out in the Carers and Direct Payments (Northern Ireland) Act 2002. Like England and Wales, this outlines the extension of policy to "carers," parents/guardians of disabled children and 16 or 17 year old disabled persons.
The main focus of change in Scotland was set out in the Community Care and Health (Scotland) Act 2002. At the forefront of this was the enforcement of a mandatory duty placed on all local authorities to offer Direct Payments to all disabled people requesting them from June 2003. Although the same change was made in England and Wales, the implications of this shift in Scotland - where local authorities have been more resistant to change – already looks to be more strongly felt. Other changes made in the 2002 Act also allowed parents of disabled children to receive payments. However, it is clear that the impact of this shift remains limited as many local authorities have struggled to reorganize their services (Pearson, 2004b). This type of concern is also reflected in the decision to exclude "carers" from policy change – a move that differs from change in all other parts of the UK.
Promoting payments: encouraging awareness and developing support structures
In looking at the development of Direct Payments in the UK over the past decade, it is clear that the policy framework and access has hinged on a number of competing discourses. As discussion has shown, it is evident that the role of disability activism has been central in gaining both national and local change. However, it is also important to acknowledge the wider impact of social policy change both through the introduction of quasi-markets in service provision (Le Grand and Bartlett, 1993) and the promotion of "community care" as a main structure of support for disabled people in the UK. This next section looks more closely at some of these issues by exploring how Direct Payments have been promoted. In doing this, discussion focuses on the role of social workers as gatekeepers to Direct Payment access and support structures as a means of promoting the personal assistance role.
UK social work roles in particular have received something of a mixed press in relation to Direct Payments. Whilst examples of good practice have been highlighted (Stainton, 2002; Clark et al, 2004) whereby Direct Payments have been actively promoted as service options, social worker's position as "gatekeepers" to cash limited "care" budgets has invoked a series of conflicts. Indeed on the one hand, Sapey (2001) suggests that Direct Payments are an important means of challenging the "culture of welfare" across social service departments. However, as a number of commentators have indicated, many practitioners are unaware of the principles of independent living and social justice promoted by the disability movement in campaigning for policy change (Dawson, 2000; Pearson, 2004a). Although Stainton (2002) argues that structural conflict of interests in relation to social worker's roles within the community care system are greater threats than individual views and practice, it is clear that attitudinal barriers prevail. Moreover, there is inevitably a concern for many disabled people that the impact of Direct Payments as a means of encouraging independent living may be lessened through their positioning in a wider network of cash restricted "care services."
Resistance from within social work has also centered on broader ideological concerns over the use of Direct Payments as a mode of service provision. As suggested, this has been a dominant theme in Scotland (Pearson 2000, 2004a) where the marketization of social services has been more strongly resisted than elsewhere in the UK and in many authorities, Direct Payments have tended to be viewed as privatization strategy. Indeed the public sector union, Unison, has expressed particular concern over the impact of policy for employees in the social services sector (Unison Scotland, 2004). Although some efforts have been made to inform practitioners about policy and broader concepts of independent living, it is clear that a more systematic focus will have to be made if a long-term change in the culture of service provision is going to be made.
Another important aspect of successful policy implementation has been identified through the role of support organizations. This has been emphasized from both the disability movement (Hasler et al, 1999; Evans and Hasler, 1996) and policy planners across the UK (Department of Health 2000b; Scottish Executive, 2003b). Indeed, preliminary analysis for the ESRC study showed that support schemes undoubtedly have a positive effect on Direct Payment use, encouraging take-up by up to 80 percent when tested at UK level. Likewise, the value of this support has been acknowledged by disabled people across a range of studies (Carmichael and Brown, 2002; Clark et al, 2004). However, despite the recognition of this role in facilitating payment packages, local authorities are not obliged to meet the costs as part of the assessment. As a result, many organizations like Centres for Independent/Integrated Living (CILs) have found themselves in a precarious position, where it is assumed that they are willing and able to support an expanding and increasingly diverse user population, but without additional funding (Pearson, 2004b).
Whilst CILs and other user-controlled support groups have traditionally been viewed as the main centers of expertise for Direct Payments support, there has also been a growth in other local support groups. However, as Barnes et al (2000) have observed, these services have assumed a number of different forms, many of which have not developed from a "user-led" framework promoted by the disability movement. Instead, they may be run by private or voluntary sector organizations with limited input from disabled people themselves. Although it is unclear at this stage whether organizational control impacts on user choices or experiences in relation to Direct Payments, a shift away from a user-led ethos looks set to push policy further away from its independent living roots and towards a more welfarist model of services.
This paper has set out some of the key problems and debates surrounding access to personal assistance through Direct Payments in the UK. As discussion has shown, in many areas progress has been slow and uneven. This raises three interrelated issues: the promotion of Direct Payments as a tool for independent living; the role of disability activism in securing policy change; and the positioning of legislation within a marketized system of "care."
Firstly, in examining the promotion of Direct Payments as a tool for independent living, it is clear that the policy origins from within the disability movement in North America and the UK have been central to instigating the shift towards personal assistance. Access to cash payments are not in themselves enough to secure "independent living" and need to be seen as part of a network of services. Indeed, it is clear that some of the structural and attitudinal barriers experienced by disabled people have been replicated through Direct Payment schemes. This is an area that will be explored in more detail over the course of this research. As earlier commentary indicated, it is apparent that many "care professionals" with responsibility for assessment procedures fail to understand the social model and the principles of independent living that have informed international campaigns. Likewise, the failure of local and central governments to adequately fund support structures, pushes policy further away from its original values.
The social model was originally devised by disabled activists in the UK and, as Barnes (2003) explains, is an approach derived from disabled people's direct experiences of living with impairment in a modern Western society (UPIAS, 1976). This frames disability in terms of being socially produced by economic, environmental, and cultural barriers, rather than individual pathology. This understanding of disability has broadly informed a philosophy of independent living founded on four basic assumptions. Firstly, that all human life regardless of the nature, complexity and/or severity of impairment is of equal worth; second, that anyone whatever the nature, complexity and/or severity of their impairment has the capacity to make choices and should be enabled to make those choices; third, that people who are disabled by societal responses to any form of accredited impairment – physical, sensory, or cognitive – have the right to exercise control over their lives and, fourth, that people with perceived and labeled "disabilities" have the right to participate full in all areas of mainstream life on a par with non-disabled peers (Morris, 1993).
Therefore, in line with international campaigns for independent living and personal assistance, the role of disability activism at national and local levels within the UK has been critical to policy implementation. Local alliances developed between activists and policy planners have presented a stark contrast between the relatively quick growth of schemes in parts of southern England compared with elsewhere in the UK. In particular, the absence of widespread pressure from the disability movement to encourage implementation in Northern Ireland has been an important factor in the slow take-up of policy. Furthermore, resistance to Direct Payments from public sector workers in many parts of Scotland and Northern England has been difficult to overcome when activism has been less prominent.
The positioning of Direct Payments within the Community Care system therefore presents a number of problems with regards to pursuing social model and independent living goals. From the outset, the development of the ILF, which established a precedence for cash for personal assistance in the UK, was set up as a charity to provide short term support to disabled people categorized as having "high dependence needs". Although funded through the Social Security system, like Direct Payments, it remains lodged within a framework of "care", whereby access remains reliant on professional assessments of disabled people.
The expansion of Direct Payments to other user groups also raises issues about the "ownership" of policy. This not only touches on philosophical concerns from within the disability movement, but the extension of policy to "carers" in England, Wales, and Northern Ireland and to other "community care groups" in Scotland, may undermine the broader progress towards independent living which have been central to campaigning.
Whilst it is clear that in some parts of the UK, disabled people are gaining access to Direct Payments and personal assistance is becoming more widely available, the overall pattern is far less positive and policy remains marginalized. As discussion has shown, policy has been caught up in a number of competing discourses in which the role of the market in the delivery of services has dominated. Likewise, the current inequity of payment access between different groups needs also to be addressed through close monitoring of local authority practice. This will require planners to identify patterns in uptake of Direct Payments by age, socio-economic class, ethnicity, gender, and impairment. The radical edge of disability activism, which first promoted personal assistance, has been an important force in establishing legislation and encouraging local authorities to reorganize their services. However, it is clear from the pattern of research, and early findings from this study, that the impact of policy as part of a framework of independent living will be greatly reduced unless a reappraisal of the key values is made.
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Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)