A critical analysis of debates concerning the social construction of Adults with Learning Disabilities
A critical awareness of the impact of salient legislation and policy on adults with learning disabilities
A critical analysis of the impact of equality and discrimination
A critical examination of how service user movements have contributed to recent debates around the development of welfare services in respects of adults with learning disabilities
A critical analysis of debates concerning the social construction of Adults with Learning Disabilities.
The World Health Organisation defines learning disability as:
…a state of arrested or incomplete development of mind”, and somebody with a learning disability is said also to have “significant impairment of intellectual functioning” and “significant impairment of adaptive/social functioning” (World Health Organisation, 2001).
Mencap 2002 in their article ‘Changing attitudes to people with a learning disability’ highlights the difficulties that this can cause, stating:
The day-to-day lives of people with learning disabilities and their families are affected by the way they are perceived and treated by the communities in which they live. Historically, public and private attitudes have been of intolerance and lack of understanding. The right to freedom from discrimination for people with disabilities, including those with a learning disability, has been enshrined in the 1995 Disability Discrimination Act, however there is still much to be done to change public attitudes (Mencap, 2005).
Has the social construction of people with learning disability advocated the attitudes of intolerance and a lack of understanding? Defining Social Construction one dictionary declared:
A social construction, or social construct, according to the school of social constructionism, is an idea which may appear to be natural and obvious to those who accept it, but in reality is an invention or artifact of a particular culture or society. The implication is that social constructs are human choices rather than laws of God or nature. Fasterdictionary, (2005)
Historically, social construction has contributed to the lack of social integration in society of people with learning disabilities and has perpetuated entrenched attitudes down to our day. This gives rise to the need for pro- active legislation, encouraged often by Service User themselves, to promote a shift in public attitudes. Why can this be said?
Pre 18th century, religious zeal deemed people with learning difficulties as suffering from a punishment for Adam’s original and other sins. Martin Luther (1483-1546) recommended the killing of impaired infants believing that their souls had been possessed by demons.
This created a feeling of fear and guilt among the parents and common people of such infants. There were references to ‘village idiots’ in pre Industrial Britain. The terminology used, at that time gives us our first glimpse of public attitude! (Grant, Goward, Richardson ; Ramcharan, 2005, pg69)
The creation/readjustments of the Poor Laws in 1834 meant that poorer people with learning disabilities were placed in Poor Law work houses. The following excerpt from Elizabeth Robins(1909) article highlighted what any person may reflect as madness; adding to the growing public and private attitudes of intolerance and a lack of understanding, she states:
The State keeps 22,483 children in workhouses. Here is a description of a Government nursery: “Often found under the charge of a person actually certified as of unsound mind, the bottles sour, the babies wet, cold and dirty. The Commission on the Care and Control of the Feebleminded draws attention to an episode in connection with one feeble-minded woman who was set to wash a baby; she did so in boiling water, and it died.” (cited in 1834 Poor Law 2005)
The Lunatic Asylums Acts 1853 encouraged justices of every county/borough to provide asylums for the ‘pauper lunatic thereof ‘. A lunatic encompassed ‘every person being an idiot’. The subsequent building of asylums and institutions segregated people from society – continuing into the early 20th Century.
Randall Smith (2005) noted that the overview of the history of official responses to mental stress included the term ‘lunatic’ and demonstrated that:
….the distinction was rarely made between “mental capacity” and “mental illness” in many of the legislative initiatives and policy debates. Even though the first “asylum for idiots” in England was established in the mid 1840s, the 1890 Lunacy Act covered both mental distress and learning difficulties. Section 341 of the legislation stated that the term “lunatic” meant an idiot or person of unsound mind.(pg19)
Could this terminology explain how the ideology that was being compounded by the growing capitalist state, which demanded removal and control of those who could not contribute to the new working practices, was given credence by the populace? This being coupled with Darwin’s Origin of the species, published in 1859, justified the application of the principle of natural selection, and segregation. Morris (1997) highlighted that:
Social Darwinism questioned the wisdom of ‘medical care for the weak’ on the grounds that this would encourage such people to survive and reproduce who would otherwise not survive. (pg47)
Giving rise to early Eugenics, the founder Francis Galton, a cousin of Charles Darwin. He believed that the ‘quality of the national stock’ had to be protected by preventing the breeding of such feebleminded people. (Grant, Goward, Richardson & Ramcharan, 2005, pg40)
We could certainly argue that contemporary society has not changed its ideology Grant, Goward, Richardson & Ramcharan, 2005, provide some model examples of this in a period of legislation we call ‘Valuing People’:
1) Screening and abortion of ‘impaired foetuses up to full-term of pregnancy
2) Withholding life-saving/health enhancing treatment
3) Having your health care needs unnoticed despite chronic constipation, dehydration, epilepsy, medication side-effects, brittle bones and difficulty swallowing being conditions associated with your cerebral palsy (pg83)
The idea of segragation was supported by the leading people in Society, the home secretary, Winston Churchill, 1910, said:
The feeble-minded should be segregated under proper conditions (of sexual quarantine) so that their curse dies with them. (Dawn Judd, 2005)
The idea of segregation still live on Grant, Goward, Richardson ; Ramcharan, 2005, confirm this by their examples:
1) Segregated housing for disabled people
2) Segregated schooling
3) Barriers- physical, social and attitudinal -to accessing youth clubs and youth facilities
4) Being told you are ‘irresponsible’ for wanting to marry and have children. (pg83)
The Mental Deficiency Act 1913 classified defectives, each case the condition had to be present “from birth or from an early age”, and compounded the attitudes of the early eugenics.
These four categories were:
idiots were people “so deeply defective in mind as to be unable to guard against common physical dangers”
imbeciles were not idiots, but were “incapable of managing themselves or their affairs, or, in the case of children, of being taught to do so.”
feeble-minded people were neither idiots nor imbeciles, but
If adults, their condition was “so pronounced that they require care, supervision, and control for their own protection or the protection of others”
If children of school age, their condition was “so pronounced that they by reason of such defectiveness appear to be personally incapable of receiving proper benefit from instruction in ordinary schools”
moral defectives were people who, from an early age, displayed “some permanent mental defect coupled with strong vicious or criminal propensities on which punishment had little or no effect (Roberts, Andrew 1981, Mental History Timeline)
Classification creates a label as a means to identification. The impact/implications of being labeled should not be underestimated. They have the potential to create negative influences, to stigmatize and affect the person who is being labeled. The ‘People First Groups’ who are people with Learning Difficulties:
* In the past we used to be called labels like mentally handicapped, mentally retarded, intellectually handicapped, or mentally subnormal.
* We didn’t like these labels as they kept us down. We choose to use ‘learning difficulties’ ourselves. It is a label which doesn’t hurt us as much as those above.
* Jars should be labeled not people!
Labels can causes oppression and discrimination. However, there is a need to label a person to enable them to receive a service, but does the stigma attached to these label encourage social stereotyping? Goffman (1961) suggested that labelling ‘creates deviance or abnormality because the individual adjusts his behaviour to that label.’ (cited in Thomas and Wood 2003, pg 25)
Becker (1964) and Lermert (1967) highlighted a danger and made this statement:
Considered deviancy theory in the broader context of any person or group that deviated from the ‘normal’. Society’s responses to people with a learning disability may not be against specific deviant behaviour but in response to deviance from the accepted societal norm.
cited in Thomas and Wood 2003, pg 26/7
Becker continued his argument explaining that the impact of labeling can be used to explain some aspects of human and social behaviour. Human behaviour is affected by social expectations, labels are often a negative process and do not explain deviant behaviour, labels can lead to exclusion through ignorance, mistrust or a misinformed understanding, and professionals have the power to place labels on certain members of society and have a radical influence on that persons life. (Thomas and Wood 2003, pg 27)
This is illustrated by, Wolfenburger (1972), who demonstrated eight myths that supported the eugenics and segregation ideologies within contemporary services to people with learning difficulties namely:
The learning disabled person as sub-human organism, diseased organism, menace to society, unspeakable object of dread, object of ridicule, object of pity, holy innocent and eternal child. (Grant, Goward, Richardson & Ramcharan, 2005, pg73)
Wolfenburger highly medical terminology highlights the traditional thought that a disabled person’s medical condition was the root cause of their exclusion from society, an approach now referred to as the medical or individual model of disability. Encouraging social exclusion by introducing inadequate policies, legislation, promoting inappropriate attitudes, a poor stereotyped media image, inaccessible buildings and information.
We can see then how the social construction of people with learning disability has advocated the attitude of intolerance coupled with a lack of understanding!
Oliver (1990) suggested the medical model, which focuses on how the body works and neglects to consider the non-medical causes of disabilities, reinforces the attitude that if a person does not fit into the same category as the majority than a person has an ‘abnormality'(discussed in Thomas & Wood 2003).
This ideology was challenged in the mid-seventies by the disabled people’s civil rights movement called the social model of disability or barriers approach (Union of Physically Impaired Against Segregation, 1976; Oliver, 1983) who stated:
that disabled people are those people with impairments who experience barriers within society. It redefined disability as pertaining to the disabling effect of society, rather than the functioning of people’s minds, bodies and senses, by making the following definitions (Barnes, 1991, page 2):
a) Impairment is a physical, mental or sensory functional limitation within the individual.
b) Disability is the loss or limitation of opportunities to take part in the normal life of he community on an equal level with others due to physical and social barriers.
Therefore the term ‘disabled people’ was redefined by the movement to mean “people with impairments who are disabled by socially constructed barriers.”
Laurence Clark and Stephen Marsh, 2002
The Union challenged the norms and values that society held; looking at the impact that society had on restricting people that were not like the majority, such as accessibility of buildings and public transport. They argued that
society was causing disability not the medical condition, therefore focusing mainly on continuing to strive to eliminate impairment and disability limits the consideration of the whole person (Laurence Clark and Stephen Marsh, 2002)
A quote from Critical Sociology 1996 confirms this stating:
Learning Disability is a Social Creation of a disabilitated society
Acknowledgement that the classification of learning disability included a combination of factors both social and medical brought together an approach that was used to identify if a person was classified as having a learning disability. This included the ‘IQ testing’ coupled with the World Health Organisation and the American Association on Mental Retardation definitions which state:
Mental retardation is a condition of arrested or incomplete development of the mind characterised by the impairment of skills and overall intelligence in areas such as cognition, language, and motor and social abilities. Also referred to as intellectual disability or handicap, mental retardation can occur with or without any other physical or mental disorders. Although reduced level of intellectual functioning is the main characteristic feature of the disorder, the diagnosis is made only if it is associated with a diminished ability to adapt to the daily demands of the normal social environment (WHO 2000).
cited in Thomas and Wood 2003 pg18
Mental retardation refers to substantial limitations in present functioning. It is characterised by significant sub-average intellectual functioning, existing concurrently with related limitations in two or more of the following applicable adaptive skill areas; communication, self care, home living, social skills, community use, self direction, health and safety, functional academics, leisure and work. Mental retardation manifests itself before age 18 (AAMR)
cited in Thomas and Wood 2003 pg19
Encouraging, consideration of the whole person and the need for pro- active legislation. In 1946 Judy Fryd, a mother of a child with a learning disability, formed the National Association of Parents of Backward Children (which later became Mencap). She wrote to ‘Nursery World’, magazine inviting other parents to contact her. Parents wrote to Judy expressing their anger and sorrow at the lack of services. (Mencap, 2005).
The ‘Report of the Care of Children Committee'(1946) supported the growing public concerns – it complained about the “motley collection” of people it found in workhouses. Roberts (1981) made this statement in his article Mental Health Timeline:
In one room, with children of workhouse inmates, there was “a Mongol idiot, aged four, of gross appearance, for whom there was apparently no accommodation elsewhere. A family of five normal children, aged about six to fifteen… were sleeping in the same room as a three year old hydrocephalic idiot, of very unsightly type, whose bed was screened of in the corner… We found a number of institutions in which normal children were sleeping with low grade mentally defective children…” (Roberts, A. 1981).
The National Health Service introduction provided for those with Learning Disabilities. Asylums were redesignated as hospitals and the local authorities became responsible under Section 28 of the National Health Service Act 1946. It is interesting to note that Mental Health and Learning Disabilities were still coupled together at this stage.
Policy and Legislation was being forced to reflect the growing public concerns and the 1959 Mental Health Act did away with terms such as ‘imbecile’, ‘mental defective’, ‘feeble minded’ and ‘idiot’ to describe people with a learning disability, but did not require local authorities to provide services.
Only 35,000 special school places were available for the 84,000 children thought to need places in Britain. Therefore terminology had been challenged and changed – but it could be argued that attitudes remained static (Mencap 2005).
We could argue that debates concerning the social construction of adults with learning disabilities, coupled with historical background, shows legislation did little to acknowledge the identity and individual worth of adults with learning disabilities, or offer them any social inclusion or citizenship status in society!
What was the impact of salient legislation and policies, which were beginning to be introduced, on adults with learning disability? Did they address the attitudes and imbalance of public intolerance and lack of understanding?
Public concern due to increased media attention surrounding poor conditions in ‘mental handicap’ hospitals, namely the public inquiries into stories of abuse at Ely hospital in Cardiff (1961) and Normanfield (1971), led to a 1971 government White Paper, ‘Better services for the Mentally Handicapped’. Laying foundations for ‘Care in the Community’. Research into hospitals and other newer forms of residential care published in 1978 identified many failings; under-staffing, inadequate resources, poor standards of hygiene, lack of specialist services and extreme social isolation (Mencap, 2002).
Porter and Lacey (2005) verifies this:
The White Paper Better Services for the Mentally Handicapped (DHSS 1971) advocated a reduction in hospital beds from 90 per cent to 40 per cent of the residential provision for the mentally handicapped, although there was little guidance on how this might be achieved. Pg 13
Barbara Castle, Secretary of State, challenged the entrenched medical model of disabilities suggesting three initiatives, these would have a major impact on changing ideology, Race (2002) informs us what these were:
… first, the setting up of a ‘National Development Group (NDG) ….to play an active part in the development of policy at the DHSS. … set up a National Development Team (NDT) whose job it would be to go round to Local Authorities and health areas, advising on implementation of DHSS policies. Second, Mrs Castle announced the setting up of a Committee of Inquiry into Mental Health Nursing and Care, Under Mrs Peggy Jay…..the third initiative, whereby Mrs Castle set in train a ‘reorganisation of the medical role in mental health’. (pg40)
What was this trying to achieve? The National Development Groups was designed to ‘balance’ the views of the medical and other professionals -advising on policies in relation to learning disabilities; aimed at promoting best practice and developing alternatives to institutional care. Perhaps a beginning of a change of attitude towards institutionalised care, but did it address the imbalance of public intolerance? (Race 2004 pg40)
The notion of ‘normalisation’ played a part in persuading policy makers and relevant professionals to reject long stay hospital based services. Introduced by Wolf Wolfensberger, and later known as ‘social role valorisation’.
Emphasis was placed on services needing to deliver a high quality of life for people with learning disabilities, by reproducing the lifestyle that was experienced by people who were non-disabled. Thomas and Wood (2003) inform us that this would be realized if:
* Day to day living was achievable
* Progression through the course of life took place
* There was the ability to choose and have self determination
* There was the opportunity for equality in economic standards
Two factors played a part in this. Firstly the difficulties arising from releasing monies from the hospitals and the secondly, interestingly – changing the views, rights and roles of people with learning disabilities within society. Thomas and Wood (2003) pg 69
How would this be achieved in the aftermath of historical legacy?
John O’Brien had a considerable impact upon the development of community care services in the UK. He suggested five key aspects to evaluate aspects of community care services. Known as the Five Accomplishments:
The right to take part in community life. To live and spend leisure time with other members of the community.
The right to experience valued relationships with non-disabled people
The right to make choices, both large and small. The right to choose where, and with whom, to live.
The right to learn new skills, and to partake in meaningful activities with whatever assistance should be required.
The right to be valued, and not treated as a second-class citizen.
(Mental Health Timeline 1981)
Sincere sentiments: The right of people marginalized by society to have equal opportunity within society is critical. However, the difficulties with normalisation are whether it is the services that negotiate the parameters – or the peoples themselves. This in itself is a power issue Chappell 1992 remarked on this:
Normalization offers a theory of how to improve services. As services are controlled by professionals, normalisation has enabled professionals to retain a key role in this debate ….it has enabled professionals to adapt to deinstitutionalization by developing new models of practice. It therefore continues to legitimize their authority. (cited in Thomas and Wood (2003) pg72)
To demonstrate, consider one of O’Brien’s accomplishments ‘choice – the right to chose where and whom to live with’. Deinstitutionalization (1970’s) offered what? Grant, Goward, Richardson & Ramcharan, 2005 inform us that:
Deinstitutionalization primary involved the movement of people with mild learning disabilities (the old ‘feeble-minded’) into a range of often pre-existing services including hostels, semi-supported group homes, family placement (adult ‘fostering’) schemes, bed and breakfast arrangements and independent living pg115
Whilst we recognise the accomplishments put forth by O’Brien providing an underpinning and guidance for service development and support. Where would you choose to live? Primarily we all aspire to live independently. But working with diversity does not mean treating everyone the same. The Department of Health made an interesting statement, confirming this claim, when discussing the education of disabled children saying:
Ensuring equality of opportunity does not mean treating everyone the same. It does mean understanding and working knowledgably with diversity (DfES/DOH/Home Office 2000 para 1:43)
Handouts ‘Working with Disabled Children’ Dawn Judd 23/10/05
Did the Griffin Report, 1988 Community Care: An agenda for action, encourage working with diversity in an understandable and knowledgeable manner? This reflected governmental commitment to increase choice -increasing roles for the private and voluntary sectors in residential and domiciliary services, but Social Service authorities would take the lead role in purchasing and organising care.
The NHS and Community Care Act 1990 encouraged a needs-led approach to assessment. Requiring that the Social Worker or assessor to look at what services may have to be purchased or provided to enable that individual to live more independently. Sapey (1993), made this argument:
That the NHS and Community Care Act 1990 is simply the continuation of an ideological tradition within social policy that started with the Poor law of 1601 in that it maintains that it is local authorities, rather than disabled people, who know best what is needed by the latter. (Cited in Oliver and Sapey,1999, pg 68)
The ‘voice’ of the person with a learning disability failing to be heard; the ideology of the Mental Deficiency Act 1913 stated that ‘feeble-minded people were neither idiots nor imbeciles, but if adults, their condition was so pronounced that they require care, supervision, and control for their own protection or the protection of others” . We once again see the entrenched attitudes of we ‘know best’! This is reinforced by Morris, (1993) who argued that:
the aim of independent living is held back by an ideology at the heart of community care policies , which does not recognise the civil rights of disabled people but instead considers them to be dependant people in need of care.
(Cited in Oliver and Sapey,1999, pg 69)
Did the Disability Discrimination Act 1995 combat this attitude? Brayne and Carr (2003) in their book ‘Law for Social Workers’ relate this statement by Theresia Degener (1995):
Eugenic population policies were carried out with the aim of eliminating those disabled through sterilization and killing programmes….Modern Disability policies are much more benign but are also based on the assumption of disabled persons not being real citizens
(Introduction to Disability Discrimination Act 1995, pg43.
The purpose of the Act was to make it unlawful to discriminate on the grounds of disability in employment, in services (shops and restaurants) and in selling/ letting property. How has it fared with respects to Learning Disability? An article from Community Care entitled ‘Lack of progress in finding jobs’ reported that:
Fewer than one in 10 people with learning difficulties are in paid work in many parts of England. The report says that there has been least progress on employment since the Valuing People white paper was published in 2001.
It is therefore hard to understand how salient legislation has done anything to overturn the entrenched attitudes dating back to 1800’s, with regards to adults with learning disabilities, other than release them from large ‘hospital like’ institutions into smaller segregation units in the communities.
The Prime Minister, discussing the prejudice and discrimination felt by people with learning disabilities and their families, made this statement introducing the White Paper – Valuing People 2001:
We have to change this situation if we are to achieve our goal of a modern society in which everyone is valued and has the chance to play their full part. There has been progress – often through the efforts of families, voluntary organisations and people with learning disabilities themselves. But a great deal more needs to be done.(Tony Blair) Pg 8
Valuing People introduced the government’s plan for making the lives of people with learning disabilities, their families and carers better. The first White Paper in 30 years, for people with learning disabilities. It principles include people with learning disabilities having rights as citizens, inclusion in local communities, choice in daily life and real chances to be independent. Fyson and Ward (2005) suggested that O’Briens five accomplishments echo the principles put forth by ‘Valuing People’ stating:
The ‘key principles’ provide a link with the past, and so should make the new vision easy for local organizations to embrace. By adopting a transparently social model of disability and making unambiguous connections to contemporary mainstream political concepts – notable human rights and social exclusion/inclusion – the principle also provide an ideological link between learning disability and generic social issues……It underlines the fact that people with learning disabilities have the same kind of needs and aspirations as anyone else. Pg 5
It could be argued that this is ‘normalisation’ modernized; dressed up to be politically correct. Does the same ‘power’ issue exist to give evidence to this statement? In discussing two major issues employment and housing we can demonstrate there are still entrenched attitudes today! (There are many other issues that daily confront adults with Learning Disability e.g. Health, Privacy, friendships, sexuality and sex, Direct Payments, Black and Ethnic minorities, Day Care Centers etc. But for the purpose of this assignment I have concentrated on housing and employment)
The ‘Valuing People’ (2001), paper said this regarding employment and housing:
Employment. Very few people with learning disabilities – probably less than 10% – have jobs. Our objective is to enable more people with learning disabilities to participate in all forms of employment, wherever possible in paid work, and to make a valued contribution to the world of work. We will develop new targets for increasing numbers of people with learning disabilities in work and ensure that the Workstep programme meets the needs of people with learning disabilities. There will be a study of the links between supported employment and day services. The Department of Social Security will ensure careful assessment of entitlement to Disability Living Allowance. Job Brokers under the New Deal for Disabled People will have the skills needed to work with people with learning disabilities.(pg14)
Housing. People with learning disabilities and their families currently have few options about where they live. Our objective is to enable people with learning disabilities and their families to have greater choice and control over where and how they live. We are legislating to improve provision of advice and information by housing authorities, and will be issuing joint DH/DETR guidance on housing care and support options. We will complete the reprovision of the remaining long-stay hospitals to enable people still living there to move to more appropriate accommodation in the community by 2004.(pg13)
The positive terminology used here is certainly in sharp contrast to previously used terminology to ‘enable’ to give ‘choice and control’, commendable sentiments. How did Rob Greig report on the progress made, in the ‘Valuing People – the story so Far (2005)’ in these areas?
Employment – the situation is little improved this is because of conflicts in the ‘equal opportunities’ rules. Day Services are in need of change – to include in their remit assisting and helping those who would like employment. The government are attempting to turn around the entrenched attitudes that promote discrimination and oppression – they have developed a new hand book for employers entitled ‘Employing People with Learning Disabilities: A Handbook for employers’ (Sec1:17)
Housing – there is more choice about where to live, but still needs to be more choice. Housing Corporations are considering Shared ownership of houses, Long stay hospitals have agreed they will close by March 06. (Sec1:16)
Amy Taylor(2005), examined some of the set backs to provide Independent Living when she reported that a charity had lost an appeal to overturn the Commission for Social Care Inspection’s refusal to let it deregister 11 residential homes. What was the CSCI concerned about? We are informed:
The CSCI was concerned that due to their disabilities the residents may not have had legal ‘capacity’ to enter into the tenancies. It was also anxious that the granting of tenancies may not have led to changes in the services being provided to allow residents to live more independently and may have been carried out to enable housing and other benefits to be obtained. pg 10
Five months later a further article in Community Care by Maria Ahmed (2005)highlights that in the four years since people with Learning Difficulties began to be registered as something more than a ‘faint blip’ on the government’s radar, nothing like enough has been achieved despite the commitment of the Valuing People support Team. This is how the editorial comments put it:
Put each of those famous Valuing People principles up for scrutiny-independence, inclusion, choice and rights – and they all fall away like targets in a fairground shooting gallery. Everyone of them requires much more attention if people with Learning difficulties are to become fully empowered citizens in our society. pg 5
Adults with Learning Disabilities want ‘Rights, Independence, Choice and Inclusion’; they want a voice ‘Nothing for us Without us’. How can this be achieved?
Service User Groups have contributed to the recent debates around the development of welfare services. Mencap(2002) is campaigning for:
* the number of people with a learning disability in work to be the same as other people with disabilities
* a government plan to promote employment of people with a learning disability
* a government-funded support programme for people with a severe learning disability who are unable to work 16 hours a week
* the amount people are able to earn before their income support is reduced to be raised to ï¿½36 a week. This amount should be increased each time the minimum wage is increased
* equal funding for all New Deal programmes
* all local authorities and public bodies to have an employment plan for recruiting people with a learning disability and giving them the support they need to stay within the organisation and progress their career.
Valuing People advocated Partnership Boards that were to provide necessary structures for day services and employment designed to meet individual needs. Mencap (2003) have developed a briefing paper to help assist Partnership Board when it writes the housing plan.
However, it has to be recognized that Partnership Boards are not statutory bodies and do not have legal powers to make decisions about the use of public monies. Fyson and Ward 2005, informs us that:
The potential influence of Partnership Boards, therefore, lies in their ability to bring together a wide range of stakeholders, in a spirit of cooperation, to develop innovative and empowering approaches to meeting the individual support needs of all people with learning disabilities, rather than in any exercise of direct power. pg20
Carers (the role of which is immense and a subject matter in its own right) felt misled about the nature of the Partnership Boards. It is interesting to note the feelings of one such carer who said:
I am becoming a bit disillusioned in the fact that I think that there seems to be a lot of talk and no action and that has always been the case with things that I have been involved with as a carer. Fyson and Ward (2005) pg 21
It is interesting to note that no National Service Framework exists for working with adults with learning disabilities. Fyson and Ward (2005) claimed that this sent a message to Health Services that ‘learning disability services did not have to be among their key priorities’. (pg 21) These are generally used as a benchmark as to good practice Bill Robbins,(2001) ADSS Lead on Learning Disabilities had this to say on the subject:
In considering the objectives and targets it is essential that local authorities establish a series of benchmarks in relation to their provision, numbers of people with learning disabilities, projections of school leavers, numbers in supported employment in work, etc., etc. Without such benchmarks the performance indicators can become meaningless but they must also be put in the context of the demographic, economic and employment environment of the particular authority.
As a general point, performance indicators need to move more towards an outcome focus for the individual – to what extent has the quality of life improved for the individual, what are their expectations? People with learning disabilities, no more and no less that the rest of us, have individualised expectations and personal measures of satisfaction which of course must be linked to personal opportunities within the cultural and socio-economic environment in which they live (Objective 11.3)
Grant, Goward, Richardson & Ramcharan, 2005, inform us developments of ‘People First Groups’stating:
Such groups are speaking to university students, professionals, employers, government officials and families about their experience of discrimination and the changes that need to occur……A key to their struggle is to replace the old patterns of exclusion and segregation with the right to social inclusion and participation. Pg 320
The groups are run and controlled by people with learning difficulties,’ People First’ inform us of their aims :
* To help people with learning difficulties speak up for themselves, with help and support if needed. To work towards doing away with labels which affect our lives in a bad way.
* To make sure that all people with learning difficulties are respected for who they are and for what they say.
* To make sure that people with learning difficulties – know about their rights – can get their rights – have the same rights as everybody else.
* To tell people and groups in Central England and in other places about the needs and concerns of people with learning difficulties.
* To make sure that people with learning difficulties are involved, at all stages, in the planning and development of the services they receive.
* To encourage and support the growth of People First and Speaking Up for Yourself groups. To make sure that people with learning difficulties have the chance to take risks like everyone else (Sec2 -Aims)
Social Workers have to be aware of the restraints that the system we work in- which has developed inequalities and has marginalized people. I now purposely use the term people with learning difficulties (rather than disabilities). To work in practice would surely encourage us to listen to the above critiques that the service user group puts forth themselves.
How then can we evaluate the evidence base for practice? Thompson (2000) outlines that
social work practice premised on the principles of existentialism should be: ontological – sensitive to the personal and social dimensions and interactions between the two; problem-focused – sensitive and responsive to the existential challenges we all face, but particularly those that are related to social location and social divisions; systematic – with a clear focus on what we are doing and why (our goals and our plans for achieving them); reflective – open-minded, carefully thought-through and a source of constant learning rather than a rigid, routinized approach to practice; emancipatory – attuned to issues of inequality, discrimination and oppression, and geared towards countering them where possible. (Pg 23).
How could we demonstrate the principles of anti-oppressive practice and anti-discrimination throughout the social work process of assessment, planning, intervention, review and evaluation whilst working with adults with learning difficulties?
First how can individual need be meet whilst being sensitive and responsive to the existential challenges we all face, systematic, attuned to issues of inequality, discrimination and oppression, and geared towards countering them where possible. Payne (1997) describes three different approaches to social work. These are:
* Individualism-reformism – This refers to a view of social work as an activity geared towards meeting social welfare needs on an individualized basis.
* Socialist-collectivist – For Payne, this approach ‘is part of a system which seeks to promote co-operation in society so that the most oppressed and disadvantaged people can gain power over their own lives’.
* Reflexive-therapeutic – This approach is geared towards promoting and facilitating personal growth in order to enable people to deal with the suffering and disadvantage they experience. Pg 2
Addressing social welfare needs on an individualized basis – Person Centered Planning:- this should start with the individual (not with services) reflecting the needs and wishes of a person. Working collaboratively and using effective communication skills should not be underestimated.
Bereford and Trevillion (1995) did a survey asking the question ‘What is good communication and key communication skills?’ this was the reply:
* Skills in listening, responding and acting
* Able to communicate information reliably and accurately, particulary in relation to the availability and nature of resources.
* Skills in checking understanding, to ensure that communication has been effective and that what you have said has been understood.
* Avoiding ambiguity, lack of clarity or jargon in communication, so such shared meaning is important in all communication, both formal and informal, individual and collective, verbal and written, including letters, leaflets and so on.
This poses a challenge in Social Work and the varied methods of advocacy would need to be used to the full. Atkinson 1999:5 tells us that:
Advocacy takes many forms but is essentially about speaking up – wherever possible for oneself (self- advocacy), but sometimes with others (group or collective advocacy) and where necessary, through others. Speaking up ‘through others’ can involve another ‘insider’ (a peer advocate), an ‘ordinary’ person or volunteer (a citizen advocate), or a person trained and paid as an advocate (a paid advocate). All these types of advocacy are important in the health and social care fields. They co-exist but there are fundamental differences between them. Pg 173 (cited in Race 2004)
Race (2004) gave Service users view of advocacy, bringing to mind issues of authority/power discussed earlier:
Even when you’ve got an advocate, Social Services still always do what’s easiest for them. Pg171
We must listen to the service user’s voice. What do they say?
* We know what it is like not to have much power in our lives, to be treated differently from other people because we have learning difficulties, to have other people making decisions for us.
* We are here to speak up for all people with learning difficulties!
So we must consider what comes first the plan or the approach? Fyson and Ward (2005) make this statement:
A person-centred plan is clearly a very useful tool through which to support radical change in a person’s life; but the absence of individual plans should not preclude support services from ensuring that their approach is person-centred. As another commissioner put it: ‘How do you change the way somebody lives their life if you don’t put the services in place in the first place? So you’ve got to have housing in place, you’ve got to have employment…and so on’. Pg54
Person Centred planning would mean ‘Valuing a Person’ enabling people with learning difficulties to realise their aspirations for greater self-determination means tackling the fundamental imbalance of power. We have to recognise the constraints of the government. The Oxford School dictionary (2002) defines valuing as:
1. think that something is valuable.
2. estimate the value of a thing (pg703)
A Parent is spoken of as considering their child as priceless. What price or estimate does the government put on the head of someone with Learning Difficulties?
Bill Robins (2005), ADSS Lead on Learning Disabilities made this statement:
The learning disability development fund has been very important as a way to build local capacity for modernisation and people-centred approaches. However, it represents less than 1% of the combined local authorities and NHS spend and should not be the main basis of support for improvement. Changes in the ways funding is spent are likely to be achieved only if there is some form of more creative and substantial ‘transformation fund’ which enables local authorities to invest in alternative services and make efficiency improvements. Pg7
Is this happening? Maria Ahmed (2005) informs us that
Learning difficulties services could cost local authorities an extra ï¿½800m a year within the next five years if the government does not increase funding…..better services for people with learning difficulties will be “severely threatened” unless funds are found.
So can it be said that the government really value people with learning difficulties? Hazel Morgan (2005), Foundation of People with Learning Disabilities, responding to the ‘Valuing People’ paper made this statement:
The Foundation believes that people with learning disabilities are still excluded and discriminated against by society and many services. There needs to be more emphasis on ways in which people can be included in all aspects of life within their locality rather than on segregated services. People with disabilities can make a fundamental contribution to their communities in partnership with their friends and families. The Foundation welcomes the ways in which the Green Paper should contribute to the greater inclusion of people with learning disabilities, but believes that it does not focus sufficiently on the needs of people with severe learning disabilities…pg13
Recognizing this Social Work should use resources optimistically, creatively and purposefully to provide best practice for people with leaning difficulties, recognizing (as did I after a discussion with a person with learning difficulties within the university) that a person may enjoy living within the current system, regardless of what we may perceive about the real value and impact of salient legislation and policy on adults with learning difficulties.
BIBLIOGRAPHY (TEXTS/JOURNALS/PUBLISHED PAPERS)
Single Authors (as handbook instructions)
Morris, J., 1997, 1st Edition, Community Care: Working in partnership with service users, London, Venture Press
Oswin, M., 1991, 1st Edition, Am I allowed to cry? – A study of bereavement amongst people who have learning difficulties, London, Souvenir Press
Payne, M. 1997, Social Work Theory, 2nd Edition, London, Macmillan
Race, D. 2004, Learning Disability – A Social Approach, London, Routledge
Thompson, N. (2000) Understanding Social Work, Preparing for Practice, Basingstoke, Palgrave.
Thompson, N., 2001, 3rd Edition, Anti-discriminatory practice, Basingstoke, Palgrave
Beresford, P. ; Trevillion, S (1995) Developing Skills for Community Care – A collaborative approach. UK Arena
Brayne,H and Carr, H. (2003) Law for Social Workers, 8th edition, Oxford, University Press
Fyson, R ; Ward, L (2005) Making Valuing People Work, Strategies for change in services for people with learning disabilities, Bristol, Policy Press.
Grant G, Goward P, Richardson M ; Ramcharan P, 2005, Learning Disability, A Life cycle approach to valuing people, Berkshire, Open Press University
Thomas D ; Woods, H ,2003, Working with Peole with Learning Disabilities, Theory and Practice,London, Athenaeum Press.
Means, R, Richards S and Smith R, 2003, 3rd Edition, Community Care, Policy and Practice, Basingstoke, Palgrave
Oliver, M.and Sapey, B., 1999, 2ND Edition, Social Work with Disabled People, London, Macmillan Press Ltd.
Porter, J ; Lacey, P, 2005, Researching Learning Difficulties, A guide for Practioners,London, Sage
Joint Items (continue)
Prout, H. T. ; Strohmer, D.C. (Eds),1994, 1st Edition, Counselling ; psychotherapy with persons with mental retardation ; borderline intelligence, New York, Clinical Psychology Publishing
Thomas, D. and Wood, H. 2003, Working with People with Learning Disabilities, Theory and Practice, London, Jessica Kingsley Publishers
Association for Residential Care, ARC explained,
Clark, L. and Marsh, S, 2002
Community Care Act 1990 – General Practice Notebook
Community Care, 2005 – A Lack of Progress in Finding Jobs
Mencap, 2002 Making it work
Mencap, 2003, Briefing paper for Partnership Board Representativesabout housing plans
Mencap, 2005 Changing attitudes to people with a learning disability,
INTERNET BIBLIOGRAPHY (continued)
Morgan (2005) The Foundation for People with Learning Disabilities
Northfield, J., British Institute of Learning Disabilities, Learning disability factsheet, www.bild.org.uk/information/factsheets/what_is_learning_disability.htm, , written: 20/07/01
Central England People First Aims
Randall Smith, March 2005, The School for Policy Studies Working Paper Series, Paper Number 9, http://www.bristol.ac.uk/sps/downloads/working_papers/sps09_rs.pdf
Robbins B 2001, Valuing People: A New Strategy for Learning Disability for the 21st Century
Robins, B (2005)Association of Directors of Social Service
Pressures on learning disability services: The case for review by Government of current funding
Roberts, Andrew 1981-/timeline – Mental Health History Timeline ;http://www.mdx.ac.uk/www/study/mhhtim.htm; Middlesex University
Valuing People – The Story So Far, 2005
1834 Poor Law (2005)Vote For Women
World Health Organisation, 2001, World Health Report 2001 – Mental health: New understanding, new hope,
Taylor, A. (2005) ‘Setback for providers looking to promote independent living, Community Care, 2-8 June 2005, pg10
Ahmed, M. (2005) ‘ First ‘tsar’ post for person with a learning difficulty to start next year, Community Care, 24-30 November 2005, pg5 ;8
Ahmed, M (2005), Directors Fear for learning Difficulty services as NHS spending fails to rise. Community Care 20-26 October 2005,pg8