Dip. S.W. only essay – March 1999 - 4,200 words
A Diploma in Social Work
1998/1999 - 2nd Year Community Care Selected Area of Practice
Assignment. A Practice Review
Assignment that integrates understanding of knowledge, values and practice
skills with reference to existing literature, selected area of practice and
anti-discriminatory perspectives
Critically examine the extent to which service
provision for disabled adults can be user-centred.
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.
Residential service providers such as the Leonard Cheshire Foundation, Shaftsbury Society and John Groom flourished to become both rich as well as powerful in the modern creation of disability and the politics of disability. 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.
User control, empowerment and even involvement in assessment were negligible and, any assessments that took place were by and large service led rather than needs led. Disability was seen as a ‘personal tragedy’ rather than anything to do with society and of any barriers that it may be creating and enforcing (often through social service practices).
Community care up until then was care that happened within families. Social Services were in the business of the provision of segregationist services up until the mid 1970’s and it is still common practice to be offered or encouraged similar service led options that are rooted in a segregationist response (residential, respite, day care and the like). For example, 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. Equally, it now offers considerable respite care services in the same ‘Homes’.
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 reinforced not only the desirability of a user-centred approach but almost its compulsory use. 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.
In drawing up a community care plan a local authority is supposed to consult local voluntary organisations which are supposed to represent disabled service users. All well and good on the face of it, the now empowered user might think. 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). It is safe to assume – especially when taken into account the degree to which Dip.S.W. training now includes issues such as empowerment, participation and advocacy.
Yet in 1997 Davies, et al, could justifiable write that 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’ obsessed 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.
The
reality …
This is not to say that there are not examples of good practice, there undoubtedly are 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 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, for most disabled people.
If one looks at the user-centred service and user empowerment project set up by Leonard Cheshire (LCDPF) for example one can see it as – despite the valiant efforts of its disabled workers – little other than an exercise in legitimating itself as a voice of disabled people rather than what it actually is: a non-disabled business with turnover in the last 18 months of £116 million. Even its user empowerment project, LCDPF, is 95% funded by the state in the form of a £500,000 NLCB Award. The structure’s or the organisation ensure 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 is limited.
One of the most effective ways of legitimating a non-disabled organisation as the voice of (those organisations usually called ‘for’ rather than ‘of’ disabled people charities) 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 is that the disabled people usually selected have not political consciousness of disability from a social model perspective and, more often than not, are either nominally disabled or of the paternalistic classes that run such organisation (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.
Some organisations are seeking to be representative of their client group, but taking the Leonard Cheshire example, the true degree of user-centredness of their services is questionable. 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.
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.
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 by in 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 (£11 millions worth of business is not going to be given over just like that!); organisations such as the main service provision charities and the professional who derive almost their entire status from the distancing of the service (assessment and delivery) from the service user. 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. Consequently, the professionals objective is rather co-optation as demonstrated in a wonderful quote cited in Evans and Fisher, 1998. They write, 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; factor which is probably at the heart of 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) and, equally, that the non-interested service provider does not exist (Barnes. 1991). On which basis 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 a service is adequately funded.
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 not often needed as no one will ask for a service anyway (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 that imagined 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. Equally, such a partnership between user and professional is the only way in which original and innovative service provision which is inclusive 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. As such it is, quite literally, an aberrant mind that can see any form of ATC or residential care (to some extent even respite care) as anything other than exclusionary and segregationist in concept, delivery and professional practice – financially beneficial in the short-term perhaps but never anti-discriminatory. This is not to argue that the individual social worker is derelict in assessing a client for such services as the structural (Davies, 1999) nature of service provision (and society in general) is instrumental in maintaining a disempowering bias against actual anti-discriminatory professional practice 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 in the least.
If one looks at the nature of a range of services like that provided by Sense, who equally promote themselves 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; professional orientate change with little reference to need; 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 user-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, for an individual should 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 users has become more independent in thought, social skill 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 – 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 within voluntary organisations who provide cheap care at home and other services through volunteerism rather than professionalism (i.e. Leonard Cheshire).
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 them 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. Some interesting work around this area has been carried out by Art Link in collaboration with Birmingham Social Services. 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 to fulfil their needs. 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 considered; once as individual is assessed for day care service they tend to become dependent upon it and end up going for the rest of their lives; 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 in its delivery – a huge number of variables exist both for indiviual clients as well as clinet group specificty’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 – is essential if non-exclusionary services are to be designed, commissioned and, hopefully, truly user-controlled.
Problematically, the issue seems to be 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). Working, by and large, in support of traditional exclusionary service provision (often supported structurally, as it is presumed to be cost effective) provided by non-client group controlled organisations. Training is essential for social workers and managers in recognising non-traditional forms of assessment (based both on individual need and group specificity’s) and the identification of service providing potential within a local or regional community.
Commissioning, and the significance of individual commissioners in thinking imaginatively will be crucial in the future development of user-centred/controlled service provision. Just as it is now universally accepted that a white controlled organisation providing cultural neutral (or at the very least often white biased) services to people from ethnic minorities is unacceptable; so it must soon become part of social work practice that the provider of a service to a disabled adult should be designed, developed and preferably run by disabled people who are professionally capable of delivering that service. Although there are problems – lack of skills base amongst disabled people – the commissioning process should finance the development of an organisation as well its existence through service led agreements.
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 and not exert their own false knowledge over that to the detriment of the client. For 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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