10,107 Word - Diploma in Social Work Course 1998/1999
2nd Year Dissertation - Submitted only for the Dip.S.W. in August 1999
Abstract
This
dissertation explores advocacy from a number of angles. Firstly, it looks at the antecedents of
advocacy before moving on to looking at the legal framework in which advocacy
exists and where its funding comes from.
A description of the practical nature of advocacy and the different
types of advocacy is followed by ‘The Moral Obligation’: an
exploration of the need for advocacy which discusses various writers assertions
that social services have failed disabled people by not using advocacy as much
as was, or is, possible given its availability and local authority/governmental
support. The second half of the
dissertation looks at the problems faced in using and seeking funding for
advocacy. The results of a brief
survey are then revealed in order to demonstrate the availability of advocacy
schemes and the types of services they offer. Prior to the conclusion, an examination of two large
charities working ‘for’ impaired people and their policies and work
on advocacy is discussed. A
conclusion looks ahead to a better future for disabled people in relation to
advocacy (at least within one of the two large charities discussed).
Contents
Official Page 1
Title Page 2
Abstract 3
Contents – this page 4
Acknowledgements 5
Introduction 7
Advocacy – The Legal Framework
Accessing
Advocacy 13
Funding
Advocacy 16
What is Advocacy – the
different types 18
The Moral Obligation 21
The Problems
Barriers 24
The Survey
Methodology 28
Results 31
Advocacy in Two Large
Charities 35
Conclusion: Looking Down the
Road to Self-Advocacy 39
Appendices 41
Bibliography 48
Acknowledgements
I have spent a long time in trying to achieve the
Diploma in Social Work, nearly five year, in which time I have had a baby, lost
loved ones and supported my husband.
At last there is light at the end of the tunnel.
Firstly, I must thank the University of Warwick and
Cathy Humphries for letting me back on the Diploma in Social Work to do the
final year after having had nearly four years of what was, in effect, extended
maternity leave. Without her
support I would not even be in a position to be writing this Diploma in Social
Work dissertation. Following on
from that I must acknowledge the support that I have received throughout the
year in preparing the dissertation from my personal tutors John Harrison and
then Janet Reid; equally I must thank Vicky White for having got me such a
challenging placement.
Without the assistance of my Placement tutor, Tony
Kirk, the execution of this dissertation would have been impossible, so I thank
him and all the other staff, too numerous to mention, with whom I worked with
at SENSE in Birmingham. In
addition I must acknowledge the support of Leonard Cheshire’s National
Advocacy Officer, Paul Darke, for giving me about Advocacy in Leonard Cheshire.
Lastly, I must acknowledge the support, encouragement
and financial assistance given me by all of my family and friends, especially
B. Ward Ekrad, and the patience with which Walker Darke enabled me to carryout
the writing of the dissertation.
The final result, I take full responsibility
for, and in no way should it be inferred that any of the opinions stated herein
belong to any of the individuals or organisations above whom I have
acknowledged for their support.
Any errors are mine, and mine alone.
Introduction
Advocacy is, at present, under-going somewhat of an
explosion of interest and provision.
One of the reasons for advocacy being the ‘in thing’ at the
moment is the interest in user involvement or user centred approaches to social
work practice and provision.
Advocacy, in many respects, is an essential part of the process of
increasing and facilitating user empowerment and, as such, its current position
in the hierarchy of positive things to fund is logical and to be welcomed.
The aim of this dissertation is to get beneath the
rhetoric of advocacy idealism. The
objective is to explore the realities of advocacy provision and philosophy in
everyday social services and social welfare practice in the wider context of
the social model of disability as applied to the lives of disabled people who
have physical impairments. A
context, in this dissertation, that examines, in detail, two large charitable
organisations that provide residential services for people with physical
impairments.
The structure of the dissertation is that firstly I
will provide an outline of the history and issues around advocacy that will be
utilised in the dissertation. I am
presuming a certain degree of familiarity with the social model and, as such
provide no detailed definition of it.
Suffice to say that the social model of disability in this dissertation
is that outlined in the work of Michael Oliver (1996) and expanded by Colin
Barnes, Geoff Mercer and Tom Shakespeare (1999). In brief though, I take the social model to be the
identification of the exclusionary practices within society and culture which
create disability as an external to the body of the impaired issue (a political
issue rather than pathological one).
As such, there is no such thing as people with disabilities but there
are disabled people; disabled people in that they share a collective
discrimination created socially and which has nothing to do with physical
impairments.
In this introduction I will, following this paragraph, give a brief history and make some issue raising statements. The introduction will be followed by various sections that look at the legislative framework in which advocacy is funded, developed and used; followed by sections on the numerous different types of advocacy that exist. The next section looks at the need for advocacy (The Moral Obligation). This is closely followed by a look at the problems of effective advocacy provision (i.e., funding difficulties and barriers to effective advocacy).
In addition to the empirical nature of much of the dissertation I have carried out a survey of some advocacy organisations – the results of which are detailed herein. In getting to the end of the dissertation I look at some case studies; examining advocacy – as a structural issue - in Two Large Charities working ‘for’ disabled people. Finally, I give a brief conclusion entitled ‘Looking Down the Road to Self-Advocacy’.
The history of modern advocacy can be traced back to
Sweden in the mid-1960s with the creation of the
‘flamslattsklubben’ – social clubs promoting the social
training of the ‘adolescent retardate’ (Bersani, 1998) – and
the creation of similar clubs across the socially democratic nations of
Scandinavia. The first significant
step towards such integrated social services in the USA was instigated by the
ideas, work and promotion of the self worth of people with learning
difficulties by Wolf Wolfensberger (Ivers, 1998). It was not until the 1970s that advocacy started to be
thought of use within the UK and then it was taken up by two particular social
work client groups: people with learning difficulties and people with mental
health problems.
It is interesting to note that people with physical
impairments were not seen as a primary recipient of the new philosophy of
advocacy until after the American Independent Living movement had started and
began to challenge traditional perception of disabled people as passive, but
intellectually receptive, of segregationist services. Soon, after the American Independent Living Movement had
taken up the cause of advocacy similar groups in the UK took its aims and
objectives (self-advocacy) to its heart.
Organisations such as the Spinal Injuries Association and the Derbyshire
Coalition of Disabled People, to name but two, were set up; culminating in the
creation of the British Council of Organisation of Disabled People in 1981
(Barnes, 1998).
It would be useful if we looked at what advocacy was,
and is, to disabled people’s groups representing the physically
impaired. In doing so, it will
become apparent how different its approach is to the tradition social welfare
philosophy of seeing the disabled – any social work client group for that
matter – as the happy recipients of appropriate social services. Social services, and social work
practice which was, and still is by and large, are individualistic and see
disability as a pathological and as either a matter of rehabilitation or
warehousing (Barnes, 1990).
Barnes, writing in 1998 on advocacy, states that advocacy is:
[I]n the broadest sense, [ … ] about exerting influence within conventional structures of power. It is the presentation of arguments in support of a particular case, policy or reform by an individual or group to those with appropriate power and influence. The aim is to elicit some kind of favourable change, either for the advocate(s) themselves or for those they represent.
Barnes, 1998, 104
It is quite apparent, from Barnes strictly social model perspective, that advocacy is fundamentally about power relations and affecting the status quo of that power relation which – for Barnes and the Disability Movement as a whole – is an oppressively one-sided power relationship in favour of the non-disabled. Barnes is arguing, in relation to disabled people, that advocacy is about trying to acquire power (in some manifestation) in a situation where other appropriate people (i.e., social services) have created an imbalance of power in their favour. From this, and the rest of the writings by the likes of Barnes (Oliver, 1996, Ward, 1998; et al), it is clear that they see social service practice and provision as part of the fundamental process of disability – the social exclusion of people with impairments. Equally, they see traditional forms of social service services as reinforcing the current power imbalance in relationships between social services and their clients. Advocacy is then an element in the process of challenging and changing the nature of that power relationship, challenging it in order to reconfigure it in favour of disabled people.
It is worth noting Barnes comments, in a chapter in a book about advocacy, when writes about the nature of advocacy and the power imbalance in the client/professional relationship. He writes:
Most professionals welcomed the introduction of the 1990 NHS (National Health Service) and Community Care Act, because it expanded their role as gatekeepers to, and controllers of, community based services. As with all recent disability legislation, this act is based upon the medical model of disability and effectively ignores the call from disabled people and their organisations for a more holistic and realistic view of disabled people’s need [ … ]. [ … ] professionals and the organisations they represent, whether they be in the state or voluntary sector, are dependent upon disabled people’s continued dependence for their livelihood.
Barnes, 1998, 105
The implications of Barnes above assertions is that advocacy in the current situation – the power imbalance in favour of the professional – makes advocacy essential if equality and justice (and civil rights) is to be achieved by disabled people. In addition to that Barnes is being pessimistic also in implying that advocacy will by and large be ineffective at best and completely undermined at worst both by the weaknesses of current legislation in giving (em)power(ment) to disabled people whilst also giving excessive power to the professional to do to disabled that which it sees fit rather than anything that the disabled client needs or seeks (as proven by the research of academics such as Davies [1999] and Morris [all]).
Thus, we can see that, from a social model perspective, advocacy is a challenge to current power relations in an attempt by disabled people to gain empowerment in a situation that is disempowering both in practice and legislative philosophy. Bagihole makes an astute statement when she writes that the concept of empowerment:
has been articulated by disabled people as part of their demands for control over their own lives and as a counter to their experience of powerlessness, but it was a radical political phenomenon which has been described as containing inherent tension [ … ]. The concept of empowerment created similar dilemmas to the articulation of human rights for people with learning difficulties. It inevitably raises questions about the power relationship between disabled people and their immediate carers, but it also raises questions between disabled people, professional, managers and politicians [ … ].
Bagihole, 1997, 139
Advocacy is not, as if life would be that simple, purely a matter of one individual (or group) supporting another individual in an attempt to get a single or multiple things changed for the better in their life because they are unable to merely articulate their needs. No, advocacy, its creation, provision and promotion and take-up, is deeply complex and as political as social welfare and disability are.
In the next section I critically examine, as with the rest of the dissertation, from a social model perspective, look at the legal framework within which advocacy exists and is utilised within the UK for people with physical impairments
Advocacy
– The Legal Framework
Accessing Advocacy
Advocacy has had a potentially significant role to play in service provision and practice since the introduction of the Chronically Sick and Disabled Persons Act of 1970. This 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).
Thus, a form of citizen advocacy was welcomed and seen as desirable. Equally, a continuance of legislative acts and guidance papers (SSI, Department of Health (DoH), and government White Papers) have reinforced not only the desirability of advocacy but almost its compulsory use. For example, legislation, such as the Disabled Persons (Services, Consultation and Representation) Act 1986, ‘incorporated themes of empowerment and partnership’ (Braye & Preston-Shoot, 1997, p.12), as did the NHS and Community Care Act 1990.
Unfortunately the key section of the Disabled Persons (Services, Consultation and Representation) Act 1986 – Section 1, 2 and 3 were not implemented; meaning that the central pillar that would have enabled the thrust towards advocacy as a norm rather than a rarely utilised support structure was dismissed as not valid through the non-implementation of the sections (see below). It is worth noting the precise wording of the section headings not implemented. They read as follows:
Section 1. Appointment of authorised representative of disabled persons.
Section 2. Rights of authorised representatives of disabled people.
Section 3. Assessment by local authorities of needs of disabled persons.
(The relevant act of Parliament, HMSO, A.)
The rights which would have been created for disabled people through such legislation would have been considerable; as it was (the non-implementation of the Sections 1,2 and 3 of the Act), meant that there was a considerable degree of disappoint amongst disabled people and disabled people’s organisations. Equally, the Act instructed local authorities to link with and work with local organisation working in the field of disability in the planning, delivery and commissioning of services. Unfortunately, this has not happened to any degree (Barnes, 1998) and where it has, occasionally (Macfarlane, 1996), it is on an ad hoc basis with limited real value for disabled people.
What the government of the day did issue was guidance (as cited in Braye and Preston-Shoot, 1995, 86) which stated that ‘service users should be provided with information about advocacy schemes (DoH, 1991b)’. Equally (cited in op. cit.), Social Service Inspectorate guidance also stated that partnerships with users should be fostered (SSI, 1993b, d). This did, and does not, as a matter of course happen (Braye and Preston-Shoot, 1995).
It was hoped that the introduction of the National Health Service and Community Care Act of 1990 would have been a step in the right direction but many academics; disabled and non-disabled alike, such as Jenny Morris, Colin Barnes and Ann Davies and John Keep. For such critics, the Act’s concentration on creating the split between the purchaser and provider marginalised even further the nature of service users’ participation and protection through the utilisation of advocacy. The act also set out a duty upon local authorities and health authorities (trusts) to consult with disabled people’s representatives and potential service users in the creation of Community Care Plans for their area. This has done little to change things except encourage the limited funding of some local advocacy schemes where funding was available or in partnership with other funders. In reality this was the re-iteration of statutory duties in another guise originally set out in the Chronically Sick and Disabled Persons Act of 1970 (see above).
Various other guidance notes from the Department of Health (et cetera) have been issued, and other legislation affecting different parts of the country enacted – including the possible implementation of the Section 1, 2 and 3 of the Disabled Persons (Services, Consultation and Representation) Act 1986 in Northern Ireland. Specifically, within the Disabled Persons (Northern Ireland) Act 1989 (C. 10).
The latest government White Paper: Modernising Social Services (Secretary of State, DoH, 1998) reiterates much of the rhetoric of past legislation and governmental dictates. But, as is now the case in reality, disabled people and their organisation hold their breath to see if it has any effect (‘not’ as the cynical amongst them have become accustomed to saying).
Funding
Advocacy:
Funding-wise, the primary sources of advocacy funding is directed and supported primarily for the non-physically impaired; groups such as: the mentally ill (LAC [99] 16); those with AIDS (LAC [99] 5); and those with drug or alcohol problems (LAC [[99] 3). Client groups given a priority through government guidance notes in the form of Local Authority Circulars (LACs). Equally, Children have more rights through the Children Act 1989. In addition to this, people who have a mental illness are also more likely to be supported with the existence of an advocacy group that is appropriately funded due to the existence of the Mental Illness Special Grant (MISG). A reality further reinforced and indicated in document such as LAC 96 (14); which even went so far as to abolish the necessity of local authorities to provide 30% of any project funded by the MISG.
The primary source of advocacy groups directed at the physically impaired – see survey results below – is through short-term joint-finance initiatives. This is mainly due to the fact that various DoH circulars and guidance notes have set out various desirable funding objectives (HSC 1998/205; LAC [98] 21; as well as those around mental illness such as LAC 96 [14]). Non-statutory funding, such as that provided by the likes of the Joseph Rowntree trust, have been exceptionally helpful for disabled people with physical impairments. In addition to this the state determined National Lottery Charities Board has put a lot of its capital to funding advocacy schemes ‘of’ disabled people; as indeed it funds the two projects looked at later in the dissertation.
Finally, another key funding initiative that has supported advocacy schemes primarily orientated towards the physically impaired is the funding usually called ‘Section 64’ which is actually DoH funding through the Health Service and Public Health Act of 1968.
It is interesting to note that in the latest White Paper from the newly elected and ‘stake-holding’ themed Labour government – White Paper: Modernising Social Services (Secretary of State, DoH, 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 advocacy utilisation. 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).
What is Advocacy – the different types
(*this section, definitions, contains
material that is replicated from existing material)
To advocate means, in everyday practice,
to support or be in favour of something.
Someone who does this on behalf of someone else is called an
advocate. Advocacy is therefore
about support, and it can be either informal or formal. Advocacy can give people a say they
have previously been denied and turn paper entitlements into real rights. Effective advocacy must be independent
of service providers, be accessible to the service user and competent. Advocacy
is a process of empowerment. Good
advocacy enables individuals or groups of people to have their interests given
the same consideration as those of other citizens.
Advocacy can be achieved in different ways
for different people and through accessing different models at different stages
of an individual or group’s development. Thus, there are different types of advocacy that may be
required at different times in different situations. Basically though, advocacy is a way of increasing power and
participation.
Crisis Advocacy: crisis advocacy shares the same principles
as citizen advocacy but is short term in nature. Crisis advocacy tends to be ‘one-off’
involvement centred upon a particular task or specific situation in which a
partner needs support of an advocate.
Peer Advocacy: quite simply,
peer advocacy is when the advocate, or advocacy organisation, is advocating for
others with a similar experience to their own. A good example of this is an advocacy organisation working
with people who have Learning Difficulties which is carried out by people with
learning difficulties, for example an organisation such as People First, which
has a network of organisations working throughout the UK.
Self Advocacy: self advocacy
means people speaking for themselves and asserting their own rights, both as
individuals and in groups with shared experiences or beliefs. It emphasises the importance of each of
us being empowered enough to be able to speak for ourselves and say what we
want, instead of someone doing it for us.
It is the logical extension of collective and peer Advocacy.
Partnership
Advocacy: partnership advocacy is about creating
partnerships that facilitate and bring about effective self advocacy through
community education and social awareness raising amongst all parties involved
in an advocacy situation. This
includes the staff of an organisation and the organisation itself, including
other relevant agencies which impact upon the life of the person or group the
advocates are working with to create a social transformation for the
individual, organisation and society.
The Moral Obligation
One of the leading academic writers on advocacy and
user involvement on decisions that effect their lives is Peter Beresford and
his partner, Suzy Croft. It is
worth noting at the beginning of this section what they write about advocacy in
their seminal text Citizen Involvement (1993, 85-86). They wrote
that:
[A]dvocacy is central to any discussion of
involvement and empowerment: It
can give people a say they have previously been denied and turn paper
entitlements into real rights.
Thus, it is apparent that is social workers in their
practice wish to empower disabled service users, many significant individual
believe that advocacy must be an everyday part of the relationship between the
client and the social worker/organisation. As I identified in the section above on the legal framework
of advocacy, although no legal right may exist to ensure that a client has an
advocate (i.e., social services do not fund them directly for a client),
advocates are seen as fundamental to empowering social work practice. Advocacy is clearly laid out in various
social work guidance booklets (Smale et al, 1998; and those DoH & SSI guides on care management listed in the
bibliography) as essential to ensure ‘good’ practice.
The question that needs to be asked is that if the
guidance is there, and the legislation that is enacted is support of such an
implementation of such practice is there, surely the use of advocacy is not an
issue as it must be being utilised.
One would hope that that was the case but research consistently shows
the opposite to be true. Not just
that social work practice is not only not utilising advocacy but that it is
also not empowering and very often oppressive. Where is the research for this: Swain et al, 1993; Morris, 1997; Barton, 1996; Davies et al, 1997; Payne, 1997; Oldman et al, 1998; and the list goes on (to include most of the
bibliography in fact). But most
damning is perhaps the contents – and its broader implications of the
failure of social services as a whole to delivering empowering social work –
of the White Paper: Modernising Social Services (Secretary of State, DoH, 1998). The statement it contains (p.12)
that there are still, despite guidance and legislative aims,
‘serious problems’
within social services and how it empowers service
users, primarily adults, is indeed an indictment of the highest order given
that much of what is rather dubious social work practice and training is
supported by the same Secretary of State (Frank Dobson). The entire thrust, in reality, of the
White Paper is seeking to ensure that service users of the future are empowered
and facilitated to what is, fundamentally, an effective form of
self-advocacy.
On a smaller scale, the work done in Shropshire (Bott
and Rust, 1997), and the work of John Keep (1999), have clearly shown that the
voice of service users is not being heard. The research shows that advocacy is the first, and a minimal
step, in rectifying what is an almost widespread negation of the service
users’ voice. Equally, as
Glendenning and Bewley have written, one can comprehensively say (and prove) that
‘service users [do] not consult with disabled people’ (cited in
Macfarlane, 1996, p 7).
Staff structure changes have not helped, as Pithouse
and Williamson have shown, they have only empowered managers at the expense of
users; expertly ‘unpacked’ in a section of their book appropriately
titled Rhetoric of Participation and Quality (1997, 4-8).
In addition to the Rhetoric
of participation, governmental support for the established voluntary and social
care work sector has not helped.
More often than not, organisations which are solicited for their
expertise as the supposed legitimate voice of the disabled have been rooted in
paternalistic, racist and sexist practises that have no legitimacy at all to
represent those they, in fact, oppress with atavistic medical model practices
(Oliver and Barnes, 1998; Barnes et al, 1999 [cf. 158]; and Braye and Preston-Shoot, 1995).
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). In
addition, Bagilhole, stated, as if there was the need to, about the NHS and
Community Care Act 1990, that ‘[D]espite the stated aim of reducing
professional dominance and the “dependency culture” through
community care, this did not happen for disabled people’ (1997,
138). Thus, it is clear that there
is overwhelming evidence of the need for advocacy by service users in order to
challenge the disempowering nature of current social work practice and social
services provision.
The Problems
The fundamental barrier to the up-take, and regular utilisation of advocacy, is the professional’s (the social worker’s) in ability to see the need for it (Oliver and Barnes, 1998). This is seen by most academics as a result of the fact that the most empowering forms of legislation which were enacted, that could have empowered a service user towards either using advocacy or being a self-advocate were created at a time of massive fiscal problems for both the state and social services. It is worth noting here what Gleeson (1999, 163) has to say, he writes that:
‘it was a misfortune of timing that
the desire to develop community care strategies coincided with the fiscal
crisis of the British state. [
… i]n spite of the exhortatory
rhetoric concerning the need for “individual empowerment”
and “high quality care” of the [NHS and Community Care] Act and
antecedent reports, a range of observers have pointed to lingering problems in
Britain’s local community care networks, including under-resourcing, user
exclusion, increasing burdens on informal carers, and poor service
delivery. [ … the NHS] and
Community Care Act, accompanied as it has been by political rhetoric about
independence, choice and control and backed by the belief in the power of
market forces to produce it, has failed to break the chains which bind
[disabled people] into unnecessary dependence. It gives disabled people no rights.’
Thus, it is obvious that the biggest problem is moving
on from the rhetoric of user involvement (in all forms and levels of social
welfare) to a reality of user involvement in practice is ‘will’ and
cash. There has not been a
professional will, to match the political will, to move ahead and empower the
user and this must – for their can be no other explanation – be due
the degree to which it would fundamentally shift the balance of power away from
the professional towards the service user. Social workers have, inadvertently, been the founding cause
of the disabled movement, for example, due to the fact that they have failed
disabled people since the end of World War II (Oliver and Barnes, 1998). Rarely, has a disabled person been
treated by social services and its workers, with any degree of empowerment; if
they had the entire structure of disabled people’s lives would not still be an issue.
It is a scathing indictment of social work practice, and training, for
example, that very few disabled people are employed in the profession and that
most of those that are feel little other than a sense of betrayal to their
clients (Stevens, 1991; Stevens, 1993; and Morris, 1996). Equally, future research, by the likes
of CCETSW (a forthcoming new edition of Stevens, 1991) and the Disability
Research Unit at the University of Leeds, will show that Universities and
Social Word Departments, which specialise in training social workers and
carrying out research, have failed to utilise disabled people as researchers
and tutors efficaciously (Moore et al,
1998). Such institutions settling,
more often than not, to use disabled people merely as ‘living visual
aids’ rather than deconstructing oppression in social work practice and
policy.
On a more practical basis, there are barriers for individuals. For example, the problems that exist for social workers in dealing with people who have communication needs that a social worker in not used to or aware of how to solve. Interesting, I was about to write ‘the communication problems of a client’, but, of course, a client does have a communication problem – it is the social worker who does; the client is simple the client. This is part of the problems; the profession often displaces a problem from their own inadequacies on to the client in order to abdicate responsibility in order to marginalise the client (at best) or simply save money for the department (at worst) (Oliver and Barnes, 1997).
Equally, there may be difficulties in the situation,
where specific cultural needs must be met which results in a shortage or
non-existence of an appropriate advocate for a particular client. This is where anti-discriminatory
practice (and funding initiatives) should come into their own right.
Funding
Problems around funding advocacy abound. Partly, again, due to the limited
nature of legislative requirements to fund advocacy, per se, and, as such, fund
organisations that deliver independent advocacy. In addition to this it must be remembered that due to the
discretionary nature of funding for non-statutory duty social welfare
organisations and agencies any funding that is available is in an open competition
against other competing – non-advocacy – interests. If only that were the only
problem. In addition to the nature
of open competition and the hegemony of bourgeois notions of professional
business expertise the best organisations seeking funding are not always likely
to be funded. By which I mean, as
research into ‘Lottery’ grant giving has shown (FitzHerbert, 1999),
organisation which are established and have the finance to spend on creating
‘glossy’ and detailed, and often cheaper, submissions for available
money are not necessarily the best.
This means that often emergent organisations of disabled people, for example may be able to deliver
the most empowering form of a service but they may not put the most
professional application form for money together. When one considers that, for example, the Public Relations
department of an organisation such as Leonard Cheshire spends more on
advertising (internal documentation) that what is the entire budget of the
British Council of Disabled People (BCODP), the picture is clear. The same scenario applies to
organisations which represent minority groups (both in society in general and
within the field of social welfare and social policy); meaning that
professional organisations linked to the industry often get the available
funding over and above those which actually offer (B)etter (V)alue.
For physical impairment orientated advocacy this is
especially true due to the creation, through state directives such as the MISG,
of hierarchies of importance within funding. Funding is increasingly harder for physically impaired
orientated advocacy services as funding is restricted – for various
reasons – to those that have a higher place in the hierarchy of
disablement (see legal framework section above). On a cynical note, but one which is never-the-less valid, it
may take a few physically impaired killers if they are to get equality of
access to essential services that other disability groups do (and rightly do.
The Survey
Methodology:
The methodology used was primarily quantitative; the seeking of clear answers which would enable clear statements to made about the organisations as a whole once the questions posed had been answered.
The aim of the questionnaire was to see the degree to
which a collection of organisations which promoted themselves as providing a
service of advocacy for people with people with physical impairments were
financially run, practising and working within a known legal frameworks. In addition I wanted to ascertain the
degree to which peer advocacy was used by a range of organisations. Equally, I sought to make some broader
statements about such organisations based upon the results (see below).
I carried out a telephone survey of 27 (out of a
potential 540) organisations that act as advocacy services, and which was only
carried out – continued - once an organisation was willing to participate
and had had explained to them who I was and the purpose of the survey. It was an ‘at random’
survey of advocacy schemes – which remain un-named due to the desire of
most participating organisations desire to remain nameless (over eighty per
cent). The organisations chosen,
from Directions (1996) - a
directory of advocacy organisations compiled by ADAIP, the Alliance of
Disability Advice and Information Providers (funded by the DoH).
The problem of accuracy is as problematic or not as
the case may be; but with the number of organisations questioned out of an
available total of 5%, its reliability (statistically speaking) is
exceptionally high.
The twelve key questions asked (with statistical
answers following the question in italics) after the preliminary introductions and questions about
participation, confidentiality and the like, were:
1.
What is the range of
your advocacy services (types)?
10% said crisis advocacy. 90% said citizen advocacy. 20% said self-advocacy. 30% said peer advocacy. (Note: 90% of those questioned did more than one type; it
was only 10% that only did one type [citizen advocacy]).
2.
Do you have a particular
client group?
100% said anybody, including disabled people. 70% said disabled people only.
3.
What is your referral
process?
100% said through social services, with 20% saying
through CABs and 10% through self-referral as well as social services.
4. Do
you use peer group advocacy?
80% said yes.
20% of the total said no.
5.
What legislative
framework do you work to?
50% of respondents knew the framework that they
worked to for people with physical impairments, i.e. that an individual had no
legal right to advocacy in dealing with social services. 50% did not know, at all, the legal
framework within which they worked.
6. Where
do you get your core funding and does it include Service Led Agreements/Joint
Funding?
90% said they were primarily local authority funded
(30% of the 90% not knowing the details, and 20% of the 90% saying it was a
combination of funders who funded them.)
10% being National Lottery Charities board funding.
7. Do you have a charging policy for people using your services?
20% said
that they did, with 5% saying the fee was fifteen percent of any monies won at
tribunals and expenses. 75%,
obviously, said no.
8. Do
your advocates get a fee or expenses?
80% said yes, travel (et cetera), only. 15% said no. 5% said yes to travel (et cetera) plus a percentage
of any financial award made as result of their support and advocacy.
9. Do
you provide training for staff/volunteers/external workers?
90% said yes and 10% said no to all three.
10. Do you have a
waiting list of clients/advocates?
For clients: 70% said yes (30% no). For advocates: 60% said no and 40% said
yes (though, logically, they should have matched).
11.
Do you do Disability
Awareness Training (DAT)?
70% said yes, 30% said no.
12.
Do you do Disability
Equality Training (DET)?
20% said yes, 30% no and 50% did not know the
difference between awareness and equality training.
The results:
From the results of the survey it obvious that
advocacy is available, i.e., it is there and waiting and ready to be accessed
by those who, by and large, fund it: social services. Significantly, even those organisations it does not fund
social services are fundamental to their continuation as they, social services,
are the main referral agency for the advocacy services for clients.
In addition, it was surprising, but refreshing, that
such a high number of services offered peer advocacy (30%). Equally, it was surprising that so few
offered crisis-advocacy as, due the nature of social service intervention, it
would have been a logical request of a high number of social service clients in
relation to, for example, assessment. The waiting lists that existed with most services
would mean that a disabled person needing an advocate quite quickly, for an
up-coming assessment (after all one is supposed to get an assessment within 28
days) would not get it. Some of
the advocacy schemes revealed, in conversation during the questioning, that the
waiting time for an advocate was sometimes as high as six months.
What was also clear from the survey was that the
provision of advocacy for the physically impaired was not the sole activity of
any scheme – as reading Directions clearly indicates of almost all the schemes that are in. The range of other services offered
varied incredibly, including in relation to disability. It was apparent that the professional
competencies of each organisation varied widely also with 50% of the
organisation questioned not knowing the difference between DET and DAT forms of
training when each comes from fundamentally different philosophies. (DET being rooted in the explanation of
social oppression in an applied context; whilst DEA is much more about the
etiquette of disabled and non-disabled relationships – quite different in
where they are each coming from and where they are going.)
The questionnaire could have been longer and more
detailed in its questions – i.e., in attempting to tease out much more of
the differences between organisations and their attitudes to wards their
clients, advocates and funders.
Equally, a more detailed questionnaire would have engaged more with the
notion of independence given that advocacy is supposed to be independent. By which I mean that, intentionally so,
the questionnaire did not go into any depth on the question of conflict of
interests given that 90% of the schemes were funded by the very organisation
that most of its client group would want to challenge and use advocacy
for.
The questionnaire was merely a snapshot of the
advocacy scene for the purposes of making some broad conclusions for the
purpose of this dissertation.
Conclusions, such as the fact that there must surely be a conflict of
interest for disabled people given that those who fund their
‘support’ are also those that oppress them through a failure to
deliver empowering services, must be drawn. There are many more conclusions (advocacy is alive and well
and freely available; peer advocacy is a significant force and growing;
advocacy organisations should be more aware of the legal framework within which
they work; and a host of other conclusions).
What is important though is that advocacy is there and
if, as research seems to indicate and legislation seems to require, disabled
people are not being facilitated to access it, something is fundamentally wrong
in social work practice as it is.
Equally, that with the on-set of legislation about Direct Payments now
in place the many who could benefit from such direct payments are not going to
get it; only the knowledgeable, articulate and demanding few will get access to
advocacy just as the same few will access direct payments. Meaning that empowerment will, as it is
(Oliver and Barnes, 1998), be the preserve of the few (disabled people) rather
than the majority.
Obviously one of the biggest problems that the, any,
advocate might have to deal with, with the service user and social services representative
(i.e., social worker), is conflict (Simons, 1993). Conflict is a big issue because often what is at stake is
much more than the nature of a relationship between individuals; it can often
be more fundamentally an issue of business. For example, someone wanting to leave residential care may
seek to live independently and, if truth be known, it is of no ones financial
interest: the residential home loses money, it may have an empty space for a
considerable time etc; it should cost social services more to enable an
individual to live in the community (if it does not what were they doing there
in the first place – baring other complexities). The only person who would benefit is
the client, morally, spiritually and financially (given that a residential
service user is often only allowed £15 a week to keep of their benefits).
As such, conflict can be very forceful and, as a
result, inhibiting for client and client to effectively challenge and existing
imbalance. Thus, conflict
management must be a part of an advocates training and the professional must be
prepared to de-power themselves in the interests of the greater good of the
client.
Advocacy in Two Large Charities
Advocacy is now widely available and the history of
two large charitable organisations facilitation of their users to it is
revealed with a brief look at the nature of Leonard Cheshire and SENSE’s
policies and actions in relation to advocacy. The documents mainly referred to in this section are in this
dissertation’s appendices. I
have concentrated largely on the organisational matters of each organisation,
in relation to advocacy, because the practical realities of its use within each
organisations on a daily basis is similar as they often use and work with the
same external advocacy organisations and individuals. What is most different about each organisation is their
structural support of advocacy as a concept and practice within their
respective organisations.
SENSE’s is very revealing in that it has quickly
and effectively, as well as comprehensively taken all issues of advocacy on
board at a every level, and in all personnel areas of the organisation. This in none more clearly demonstrated
by looking at SENSE’s Charter of Services: Users Rights: a document which sets out that the service user has
‘[T]he right to advocacy’.
If compared to Leonard Cheshire’s charter, [T]he Leonard Cheshire
Charter, which makes no mention of advocacy and, instead, goes for broader statements
of rights and opportunities, the difference is quite unmistakable. SENSE obviously have a better
understanding, as well as practice objective, in mind when they support their
Charter with a comprehensive package of advocacy related material and an
in-depth policy which is as demanding as it is explanatory.
If the SENSE policy (its size is revealed by the fact
that the appendices includes only an abstract from it of three pages) is
compared to Leonard Cheshire’s (a single page) the difference is
astounding. What makes the
difference even more remarkable is that Leonard Cheshire’s client group
is nearly ten times the size of SENSE.
Leonard Cheshire has over 12 000 users (of which over 2000 are
residentially based) whilst SENSE has a residential base of 330 and a similar
number of non-residential clients.
One would have thought that an organisation the size of Leonard Cheshire
would have been more effective in ensuring its service users rights, but they
have not been.
It is worth noting that although Leonard Cheshire has
an Advocacy Policy it is under-review due to the fact that paragraph three
implies, though does not categorically state, that Leonard Cheshire will pay
for advocacy for its service users.
Creating a scenario that has prevented some internal services within the
organisation seeking an advocacy scheme for service users through a fear of
having to pay for it.
SENSE’s service users are also getting a better
all round advocacy facilitation in that they have developed a special advocacy
training pack and training sessions for all service’s and their
staff. Leonard Cheshire on the
hand is not going to deliver anything like such a package either in the short
to medium-term. What Leonard
Cheshire is doing (Cadbury, 1998) is aiming to incorporate elements and an
awareness of advocacy in four other areas of its training: Induction (for new
staff only); Individual Service Planning (a form of in-house assessment and
review); (S)NVQ training and competencies; and Keyworking. In addition to this they are seeking to
issue to each individual service (of which they have over 150) an Advocacy
Directory which will include sections linked to the four key areas of training,
as well as a list of all the services in that service’s locality.
Even so, this will not be anything like the commitment
that SENSE has given to its clients in respect of Advocacy. SENSE, with whom I was on placement,
have been very proactive in the area of advocacy; seeking to ensure its use and
development as part of the good practice of the organisation. Such a reality is one that will,
surely, pay dividends for its clients, their families and individual
services. It is worth noting that
both organisations, as revealed in the papers that accompanied the development
of their policies, contemplated developing their own in-house advocacy services
as a ‘short-route’ development and client-use of advocacy. Significantly, it was also considered,
as such, as it could have been a new source of income, in the case of Leonard
Cheshire – which is, after all, one of the largest businesses in the
disability business. Fortunately,
for their client group and service users, such a plan was rejected as
representing a conflict of interest.
Instead each organisation decided to seek ways of ensuring that service
users accessed already existing advocacy services (thus the directories and
training carried out by both organisations).
The recent development of the desire for advocacy
facilitation in both organisations can be seen as both pragmatic and somewhat
cynical. Politically it has become
apparent that such organisations as SENSE and Leonard Cheshire (where isolated
cases of overt abuse have been identified in both organisations) would have had
to show that they offer, as a bare minimum, a minimal amount of user
empowerment to continue to be supported by local authorities and receive
significant amounts of national funding (for governmental grants for research,
new initiatives and/or to implement structural changes, et cetera). Leonard Cheshire’s entire
advocacy project (apart from an additional 10% contribution) is itself funded
externally by a grant from the National Lottery Charities Board which came
under intense pressure for giving over a half-a-million pounds to an
organisation ‘for’ impaired people rather than one ‘of’
disabled people (Evans, 1998).
If one takes in to consideration that SENSE also
created for their staff a series of publications, on advocacy, to ensure that
it is understand, taken on board and then implemented, with minimal external
funding, the difference in organisational ‘political will’ in each
organisation is evident.
SENSE’s creation of a Staff Information Pack, and a two booklet
pack on advocacy entitled ‘Do The Rights Thing’, for all staff in
services is a commitment that must be commended and identified as a model of good
practice.
Conclusion: Looking Down the Road to Self-Advocacy
From what has been written above it is clear that
although disabled people do not have a right to informal forms of advocacy at
the moment there is a lot of potential for its use by disabled people if they
are supported by the professionals supposedly working for them. The case of SENSE demonstrates that
some organisations are making strenuous efforts to ensure that their service
users utilise advocacy where ever, and when ever, it exists or is needed. The survey showed that advocacy schemes
exist and, by and large, offer a broad range of services that could meet most
needs and that, where they are unable to meet the need time is all that is often
needed.
The biggest problem – and little research exists
on this that is precise and rooted in quantitative data – seem to be the
professionals’ inability to disentangle themselves from their own power
for the sake of user empowerment for the user’s voice to be heard as the
most important of any, for example, assessment. The need for advocacy is not in question, as various
section’s contents have shown, all that remains is that advocacy move up
the agenda of the professional’s practice. The legislation is there for its development, even if it is
not there for disabled people to access as of right informally.
The introduction of the Disability Discrimination Act
1995, and its various amendments, which is now coming on stream will reinforce
the right so of disabled people to legal advocacy and, one suspects, the
failure of the social services to make informal advocacy stronger will mean
that legal advocacy will be resorted to much more often than would otherwise
have been the case. Only time will
tell on that one.
What is safe to assume is that disabled people are
collectively and individually beginning to self-advocate in a way that has
never been seen before and that if social work practice (and policy) does not
respond positively to such a positive step forward for disabled people, the consequences
could become drastic for the profession.
Social workers value and professional status could drop dramatically as
disabled people start to tell their stories of disempowerment and
marginalisation at the hands of a profession which has for long been more
dependent upon the disabled that the disabled has on it (Oliver and Barnes,
1998).
It is now, beyond reasonable doubt, that advocacy is
essential if disabled people are to be empowered and facilitated to take
control of their own lives.
Equally, advocacy is now seen as essential (Beresford and Croft, 1993)
if user-centred services and policy decisions are to be taken control of by
disabled people. As such advocacy
must now be seen as an essential part of the took-kit of the professional
social worker as they set about empowering all of their clients and not just a
select few.
Advocacy is quickly becoming the best way to ensure
that users’ voices are central to the care management process and the
further empowerment of the client.
It is true, there are models of good practice around and there are
models of bad practice but what is important is that, fundamentally, advocacy
puts the user and the users voice at the heart of the decision making process
about his or her life as a disabled person. Advocacy is a needs-led approach that can, hopefully,
finally leave the text-book and enter the real lives of disabled people; its up
to the professional now to ensure its actual practice.
Appendices
originally attached but not on this web site
from
Leonard Cheshire
The Leonard Cheshire Charter 1
page
Advocacy Policy 1
page
and from
SENSE
Charter of Service – Users Rights (from SENSE
WEST) 1
page
Abstract from Forthcoming Advocacy Policy 3
pages