Diploma in Social Work 1998/1999 – March 1999
- 2nd Year Community Care Selected Area of Practice
‘integrate
understanding of knowledge, values and practice skills’
with reference
to
existing
literature
selected area
of practice
anti-discriminatory
perspectives
Critically examine the extent to which
service provision for disabled adults
can be user-centred.
Introduction …
The aim of this essay is to explore the nature of user-centred social practice and policy given the hegemonic legacy of previous notions of user empowerment rooted in a paternalistic charity model of service users’ views, hopes and aspirations. The objective is to examine, under a series of headings, the different factors and realities that have affected and still effect practice and notions of ‘user-centredness’ and user-empowerment today. Consequently, I look at the past in order to examine the present and conclude with a view to the future.
Setting the scene …
User-centred philosophies for disabled people have been around a long time; originally coming out of the disability movement focused around Berkeley, California and the notion of Independent Living developed and practices there from the late 1960s and early 1970s. Prior to that, especially in the UK, service provision had been on an ad hoc basis and often orientated towards the residential, especially for the more moderately and severely physically and mentally impaired.
In the post-war (WWII) era, residential service providers such as SENSE (with whom I am on placement), the Leonard Cheshire Foundation, Shaftsbury Society and John Groom (amongst many others) flourished to become rich as well as powerful in the modern creation of disability and the politics of disability (Oliver and Barnes, 1998). Alongside of this, organisations such as RADAR, The Spastic Society, RNIB, RNID and ASBAH were created, usually with a significant degree of public money, to provide advice, support services and impairment specific equipment. Concomitantly, local authorities ran their own services such as ATCs, Special Schools and funded their clients’ incarceration in their own or others’ (above) residential services, sometimes hundreds of miles from their own homes and families (Oliver and Barnes, 1998; Oswin, 1973; et al).
Consequently, user control, user empowerment and even user involvement in assessment was negligible and any assessments that took place were, by and large, service led rather than needs led. Disability service provision, and practice, was seen as responding to a ‘personal tragedy’. Disability was, thus, construed as nothing to do with nor created by any barriers that society may be creating and enforcing (often through social service practices – Rojec, et al, 1999). Society, through its practices –including those of any Social Services, reinforced the idea that disability was nothing other than a personal tragedy; it negated the idea that disability might be a social and political issue (Oliver, 1996; Morris, 1992; Barnes, 1990).
The notion of ‘community care’ up until the 1970’s was care that existed within families or was offered by paternalistic and charitable organisation set up by the ‘great and good’ of the day (Barnes, 1991; and Drake, 1999). Social Services were in the business of the provision of segregationist services up until the mid 1970’s (op. cit., all) and it is still common practice to be offered similar service led options that are rooted in a segregationist response (residential, respite, day care and the like). For example, SENSE still has over 330 long term residential spaces. Equally, Leonard Cheshire (it has dropped the word ‘Foundation’ in order to appear more modern and business like) still has over two thousand long term resident in its Cheshire Homes, with social workers eager to place more young people in them as space is available. Significantly, SENSE and Leonard Cheshire now offer considerable respite care services in the same ‘Homes’.
The reality of the past was clearly not user-centred in any significant form other than if a service user happened to be of the same class, status and education of the socio-cultural elite’s who created and ran the large charitable organisation and developed policies to support them politically. The degree to which the political landscape of service development and practice has changed is debatable and deserves an essay in its own right, but what is clear, from writers such as Colin Barnes, Michael Oliver, Jenny Morris and Tom Shakespeare and many others who know far more about the issue that we do, is that the notion of disability as a personal tragedy (alone) is still inherent within the system. The construction of the Disability Discrimination Act (as shown in Barnes, Mercer and Shakespeare, 1999), as well as the current DfEE campaign ‘See The Person’ (Findley, 1999) is indicative of the hegemony of such a perspective. Consequently, current service provision cannot be seen as fundamentally too different from past disability practice and policy excepting that it sees user-centredness as a further tool in the rehabilitation process (individualising) and not as something which will effect the nature of service provision and practice.
User-centred
…
User-centred service provision and assessment has had a potentially significant role to play in service provision since the introduction of the Chronically Sick and Disabled Persons Act of 1970. The 1970 Act gave local authorities the power to recognise the ‘desirability of appointing to the committee persons with experience of work among and of the needs of the chronically sick and disabled, and of the person or persons with that experience being or including a chronically sick or disabled person or persons’ (cited in Keep, 1998). Equally, a succession of legislative acts and guidance papers (SSI, DoH, and White Papers) have since reinforced not only the desirability of a user-centred approach but almost its compulsory use. For example, legislation such as the Disabled Persons (Services, Consultation and Representation) Act ‘incorporated themes of empowerment and partnership’ (Braye & Preston-Shoot, 1997, p.12), as did the NHS and Community Care Act 1990.
All well and good on the face of it, the now empowered user might think. For example, in drawing up a community care plan a local authority is supposed to consult local voluntary organisations that are supposed to represent disabled service users (Davies, et al, 1997). Consequently, it is safe to say, various legislative, guidance and government policies have been written, enacted and devised with user centred service provision and assessment at their core (ibid). Also, especially when one takes into account the degree to which Dip.S.W., training now includes issues such as empowerment, participation and advocacy, user-centred service provision would seem to be what a service user could expect at the very least.
Yet in 1997 Davies, et al, could justifiably write, in relation to accessing assessment, that: ‘from the viewpoint of most disabled people and carers [ … theirs] was an experience of uncertainty, confusion, marginalisation and exclusion. It is not a process which often involved disabled people in active participation in review and decision-making’ (p.71). Consequently the reality of user-centred service assessment and provision is more of a façade than a reality, even today. It is interesting to note that in the latest White Paper from the newly elected and ‘stake-holding’ themed Labour government – Modernising Social Services, November 1998 – even it acknowledges that ‘service users and carers often play little or no part in shaping services. Attempts at consultation [ … ] turn out to be public relations exercises’ (p.29). A recognition, if somewhat unintentional, of the past thirty years failure by local authorities to deliver on governmental and local authority’s promises of even the slightest advances in user-centred services and assessment being available. This is not disability politics dogma, nor is it the rhetoric of the disabled activist. It is the observations of academics, current government representatives and other research institutions (i.e., Davies, et al, 1997; Morris, 1993; Oliver, all, Barnes, all; SSI; DoH; and Douglas, 1999). To simply dismiss it as part of a disability politics is nothing short of ignorance rooted in self-interest and naiveté (Barnes, 1990).
The
current reality …
This is not to say that there are not examples of good practice, there undoubtedly are (the Warwickshire Coalition of Disabled People in Leamington Spa is a good example) but even some of the so called models of good practice (even identified in the White Paper already quoted from) are not what they seem. Often the voice of disabled people is not their voice at all but that of an interested organisation who has evolved through their location (politically, historically and geographically). It is interesting to note that, for example, Leonard Cheshire moved to a new headquarters in Millbank Tower in Westminster for no other reason than to remain near the seat of power in order to exert significant power over policy and decision makers in Westminster. Tragically so for most disabled people – running the largest network of residential institution is not likely to encourage support for Independent Living, empowerment and user-centredness.
If one looks at, for example, the user-centred service and user empowerment project, the Leonard Cheshire Disabled People’s Forum, set up by Leonard Cheshire one can see it as – despite the valiant efforts of its disabled workers – little other than an exercise in legitimating itself – as a paternalistic organisation - as a voice of disabled people. When in fact what it is, is a non-disabled business with turnover in the last 18 months of £116 million. Significantly, even its user empowerment project, LCDPF, is 95% funded by state determined policies dictated to the National Lottery Charities Board (NCLB) in the form of a £500,000 NLCB Award. Leonard Cheshire, the organisation, ensures that the disabled voice is not only marginalised but – through careful public relations (see Leonard Cheshire Today, 1999) – given a prominence in organisational literature that in conversely related to its actual significance. As the LCDPF is only the equivalent of 7 full time workers in an organisation employing over 6,000 and servicing 13,000 users (LC internal documentation) the struggle faced by the LCDPF in achieving any significant degree of change within Leonard Cheshire is limited.
One of the most effective ways of legitimating a non-disabled organisation as the voice of disabled people (those charitable organisations usually called ‘for’ rather than ‘of’ disabled people) is the token positioning of disabled people within them as either workers or on their management board as a trustee (et cetera). One of the problems for disabled service users of such organisations, including SENSE, is that the disabled people usually selected for such positions have no ‘disability’ political consciousness from a social model perspective and, more often than not, are either nominally disabled or of the paternalistic classes that run such organisations (SENSE, RADAR, Leonard Cheshire, Scope and many others [Barnes, 1991]). Consequently, the voice of the true disabled service user – usually from the working class and having achieved limited educational achievements (Berthoud, et al, 1993; and Baldwin, 1996) – is still un-heard or even facilitated by social services practice and provision. For example, the care management process, at the heart of good social service provision guidelines (rather than actual practice), is virtually unheard of within organisations such as SENSE and Leonard Cheshire due to social services, social workers, abdicating responsibility of or to their clients (Douglas, et al; Evans, forthcoming).
Some organisations are seeking to be representative of their client group (Mencap is a good example), but taking the Leonard Cheshire example, the true degree of user-centredness of their services is negligible despite appearances to the contrary. An organisation like Mencap, for example, is striving to take a positive step forward to become an organisation of disabled people rather than what it currently is: an organisation for disabled people owned and controlled by a non-disabled board, staff and volunteers. One might ask what this has to do with user-centred services and local authorities; in which case one need only look at whom or what provides services: voluntary organisations (op. cit.) who more and more claim to be user-centred when they are not. Such a view is at the heart of the split between conventional service providers (including SSDs) and the disabled peoples’ movement. Such a realisation is not a dogma but based on the failure of practice to meet need. A realisation identified, consistently and comprehensively, in research by the likes of Oliver (1996), Barnes, all, Morris, 1993 and the current research of the likes of Clare Evans, Peter Beresford and that disseminated weekly on the pages of Community Care: The Magazine for Everyone in Social Care. The dismissal of such research as rhetoric that is politically motivated is at best self-interested and at worst ignorance.
As it is more and more the case that service provision is being designed, led and delivered by voluntary agencies (and the White Paper from 1998 sees this as positive, on the increase and to be welcomed) their user-centredness - be it led, controlled or influenced by – is paramount to any examination of service provision being user-centred. Thus, the distinction between what is a public relations exercise and what is ‘real’ is vital. If a major service provider such as Leonard Cheshire – physical and mental impairment ‘specialists’ – who provide over 1.5 million hours of care at home to disabled people living in the community (Leonard Cheshire Today, p.3) in the UK is / or is not user-centred is fundamental to whether or not service provision is user-centred. Clare Evans, along with Peter Beresford, Ann Davies and others are at the forefront of user-centred practice and research and, as such, their work, criticisms of the White Paper (op cit. [Beresford, 1999; and Davies, 1999]) must be considered seriously. Equally, the White Paper itself recognises the almost complete failure of service provision and social work practice to be, to any significant degree, user-centred.
The
good, the bad and the user-centred …
It goes almost without saying that service should in the very least be user-centred and ideally it should be user-led from its conception, research, design and delivery. Almost the only people or organisations who argue against this are those who have a vested interest in maintain the status quo; billions of pounds worth of business is not going to be given over just like that! A flippant statement but one which gets at the heart of the issue that ‘care provision’ is big business and not a matter of mere charity even for charities. Organisations such as the main service provision charities and the professionals who derive almost their entire status from the distancing of any given service (assessment and delivery) from service users; thus, the professional social worker has a vested interest in maintaining the disabled as dependent. Thus, one of the main problems in making a service user-centred is the professionals’ reluctance to share, let alone give away, their hegemony of power (Beresford and Croft, 1993). Consequently, the professional’s objective is rather co-optation as demonstrated in a wonderful quote (cited in Evans and Fisher, 1998). They write, themselves quoting Haug and Sussman that:
[T]he objective is to socialise the [client] into special organisational knowledge of the professional circles … In this way, the authority of the professional is preserved at the cost of sharing only a small proportion of his [sic] professional power.
Thus, the initial problem to service provision being user-centred is the professional’s unwillingness or even inability to relinquish their power and take on board the notion that they may not be the expert in someone else’s condition of existence. Jones (1995) developed an excellent diagrammatic demonstration of the continuum from service led provision services to user controlled services which I have amended for the purpose of this essay (Diagram A).
Diagram
A
To Users > For Users > With Users > By Users
--------------------------------------------------------------------------------------------
increasing participation and partnership
------------------------------------------------------------ >
increasing choice and control
---------------------------------------------------------------- >
From the diagram it is possible to easily identify that the progression to user-centred services should eventually be user-controlled; a factor which is probably at the heart of the problem for the state, charities and local authorities to embrace the notion of user-centred service provision because of its logical progression to being user-controlled. It has already been identified that the impartial researcher is a myth (cf. Barnes and Mercer, 1997; Moore, et al, 1998; and Corker and French, 1999) but, equally, the non-interested service provider does not exist (Barnes. 1991). Thus, it is safe to assume that the only group capable of providing a service which is needs-led to any great degree is that which is, initially, user-centred and eventually user-controlled. Implicit in all of this, for effective service provision, delivery and development that makes a service responsive to its users, is the need for appropriate funding which recognises the need to pay service users for their skills, time and expertise (Evans; all). Equally, it is essential that services are adequately funded (though this is often the excuse given by existing services for their failure to be needs led it is often only a smoke-screen behind which bad practice is hidden or upon which complicit practice is supported).
Beresford and Croft have identified two essential components of user-centred empowerment projects (i.e. user-centred service provision) and those are proactive support and access. Access to services is limited more often than not on the basis that what they don’t know about they can’t ask for; thus support is deemed as not needed as no one will ask for the service (Oliver and Barnes, 1999). This is not social work, welfare management or even democracy but disenfranchisement and abject disempowerment rooted in exclusionary practices and processes (ibid) which are more about financial management than being a service let alone user-centred (Albrecht, 1976).
Other significant problems exist around having a service user-centred and these range from the ability of users being able to identify for themselves, let alone articulate them effectively, what aims and objectives they (individually and collectively) would like to come out of any service provision. This is less of a problem in recent times as advocacy provision expands and new social work practices come on stream to replace one-way assessment practices (Smale, et al, 1998). The users voice can be accessed and – if listened to – instrumental in making an adequate assessment; an excellent care management programme designed and delivered with the full aims and objectives of the user as instrumental in its inception, design and applicability will deliver better services. Equally, such a partnership between user and professional is the only way in which original and innovative service provision which is inclusive (of women with impairments and black people with impairments et cetera) rather than exclusive and segregationist can be identified (Ballock, et al, 1998). In order to be fully workable, and within any significant degree of anti-discriminatory practice framework, all service provision should be non-exclusionary and fully inclusive through the creation of partnerships. Services that are ‘done’ to users, by their very nature, tend to be discriminatory as they reflect the nature of the service organisation (racist, sexist and disablist). As such it is, quite literally, only an aberrant mind that can see any form of ATC or residential care (and respite care) as anything other than exclusionary and segregationist in concept, delivery and professional practice – though financially beneficial in the short-term it is, never-the-less, never anti-discriminatory.
This is not to argue that the individual social worker is derelict in assessing a client for such services, though they often are. The structural nature of service provision (and society in general) is instrumental, key, in maintaining a disempowering bias against actual anti-discriminatory professional practice (Davies, 1999) for disabled adult service users (Oliver and Barnes, 1999; and Barnes, 1991). Though it must be said that many social workers fail to offer a service having first done the ‘would I like it’ test first; making them willingly complicit at the very least.
It is revealing to look at the nature of a range of services like that provided by SENSE, an organisation which promote itself as an organisation which is actively involved in delivering user-centred services (Talking Sense, No. 4). Few people who are hearing or visually impaired (let alone both) are employed at any level; users perspectives are, at most, linked only to individual assessment levels (meaning that they are assessed for what is available rather than what they actually might need). User-perspectives are absent from service creation and development except as a result of unique individual assessment requirements breaking through management and development structures. Significantly, the employed professional orientates change with little reference to need and political concerns have a greater significance than should be necessary; and, finally, financial restraints are given as reasons for limited user-centredness. This is not to say that SENSE is any worse than most other similarly sized, structured and managed organisation, they are not; in fact they may well be better than most.
To give an example of how political factors have a greater degree of significance than actual users voices the comment of one of Leonard Cheshire’s most senior national managers is significant. On being told that users from the LCDPF wanted a national Independent Living officer, and having just come back from a governmental briefing, said: ‘Oh, that would be good, that’s what the government want us to do’.
Advocacy is an important element in providing user-centred services; not just citizen advocacy but peer group advocacy and self-advocacy. Self-advocacy, as a fundamental part of any assessment’s plan, all individual care-plan should (but rarely do – Douglas, et al, 1999) fundamentally include steps towards ensuring that a client becomes a self-advocate. Part of the review process of any service provision should be the identification of the extent to which a service user has become more independent in thought, social skills and communicating their needs effectively to a social worker.
Although the proposed Long-Term Care Charter (White Paper, 1998, p.31) seems to be a good idea – empowering users and setting standards, if high, is never a bad thing – but its ultimate test will be the degree to which the standards are appropriate not that they simply exist. Better Value, the replacement of compulsory competitive tendering process, whilst being open to cronyism is also likely to fall back on cost effectiveness with voluntary organisations who provide cheap care at home, and other services through volunteerism rather than professionalism (i.e., SENSE, Leonard Cheshire, et cetera), having an advantage over those that fulfil a need within a standard of high quality professionalism and respect.
No service, whether user-centred or not, can be truly appropriate if it is not funded sufficiently to do the job required. Service led agreements and local authorities use of SLAs with local disability CILs or Disability Coalitions to provide services is a beginning of ensuring that services are truly user-centred but one factor I have not mentioned is the role of commissioning.
Although commissioning is strongly supported in the recent White Paper – Modernising Social Services, p.30 – it is referred to mainly for people from ethnic minorities (rightly so) but also as a group / bulk issue. It is essential, if service provision is to be user-centred (which I believe it should be), that the assessment process be flexible enough to virtually commission service provision on an individual basis. Assessment, and its identification of need, to be really user centred should be flexible enough to be able to be part of the commissioning process itself for an individual service for an individual need.
In the area of imaginative commissioning interesting work has already been carried out by Art Link, in collaboration with Birmingham Social Services, for people with physical impairments. For example, in a case where assessment revealed that art was an autistic adults main way of developing skills across the board, rather than simply provide day care / therapy sessions which come and go absolutely nowhere, a professional artists was identified (and supported) to work with the client. This way the client was enabled to fulfil their individual needs in a productive manner that was developmental rather than merely containment. Consequently, the service was inclusive, involving the client in a professional relationship, rather than exclusionary, segregating the user in a day service. Such innovation in assessment and service provision is essential if service provision is to be user-centred. This case, in its practicalities, also identified one of the problems for such innovation and that was cost; but even then further considerations should be given to cost. Once an individual is assessed for day care service they tend to become dependent upon it and end up going for the rest of their lives (Barnes, 1990); actually meaning that it can be, ultimately, much more expensive in the long run.
In
conclusion …
The issue of user-centred service provision is complex, especially in its delivery – a huge number of variables exist both for individual clients as well as for particular client group specificity’s – but not in philosophy. User-centred service provision is essential in delivery services that are non-racist, non-disablist and non-sexist. Fundamentally, a user-centred philosophy – which has been at the heart of social work philosophy though not practice for at least 30 years now – is essential if non-exclusionary services are to be designed, commissioned and, hopefully, truly user-controlled in practice.
Problematically, the issue seems to be practice, service design and availability itself rather than any actual under-current in legislation and policy. The role of the social worker is essential in that up until now social workers have been working quite unimaginatively (the White Paper explicitly acknowledges this in the research it uses). Social Workers have been working, by and large, in support of traditional exclusionary service provision (often supported structurally on the basis that they are presumed to be cost-effective) provided by non-client group controlled organisations. Thus, training is essential for social workers and managers to be able to carry out non-traditional forms of assessment (based both on individual need and group specificity’s) and be capable of identifying services providing, potential within a local or regional community, appropriate services which do not merely replicate existing segregationist ones which are, fundamentally, exclusionary (Oliver and Barnes, 1998).
Commissioning, and the significance of individual commissioners in thinking imaginatively, will be crucial in the future development of user-centred/controlled service provision. It is now universally accepted that a white controlled organisation providing cultural neutral services to people from ethnic minorities is not possible let alone unacceptable. Equally, it must soon become part of social work practice that the provider of a service to a disabled adults should be designed, developed and preferably run by disabled people who are professionally capable of delivering that service. Although there are problems in jumping from the existing nature of service organisation – lack of skills base amongst disabled people – the commissioning process should finance the development of an organisation as well its continuing existence through service led agreements. To think differently, in the face of the existence of numerous user-controlled organisations ‘of’ disabled people, is exclusionary in itself. Disabled people are a homogeneous group in that they experience oppression that is socially constructed (largely out of social work practice). They are not a homogeneous group in respect of impairment, but as long as social work remains pathologically limited to seeing the corporeal limits of individuals it will never help anyone other than itself – especially society.
Research has shown that disabled adults are the true experts in their own life circumstances, the social workers role should be to facilitate that expertise to challenge and remove disabling social practices and not exert their own false knowledge to the detriment of the client. For that reason, and that reason alone, service provision and commissioning should not only be user-centred but user-designed, researched and controlled (Evans, 1999; and Beresford, 1999).
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