If the 'Whig' interpretation of history is to be believed, namely that progress follows an upward linear curve, then the Government's White Paper on learning [intellectual] disability, Valuing People: A New Strategy for Learning Disability for the 21st Century (Department of Health, 2001; see also Greig, PSYCHIATRY 2003; 2:8: 2-4), could be seen as the 'base camp' before the final assault on the summit of universal good practice. But of course it is not that simple. There have been major improvements in values, skills and services, but also a marked decline in some areas, notably the management of the transition from childhood to adulthood (see below and Gilbert, 2002) and a reduction in commitment from the NHS (see Greig, 1999). As Rob Greig, now director of the Government's Taskforce on Learning [Intellectual] Disability, remarked: 'herein lies a major national policy issue. We understand how to deliver effective person-centred services, and national policy calls for them to be delivered, yet they are largely absent' (Greig, 1999).
The Social Services Inspectorate national report of April 1998 spoke positively
about progress, pointing to major changes in services and increases in opportunities,
but acknowledged starkly that 'the range and quality of social care resources
for people with learning [intellectual] disabilities did not match users' and
professionals' aspirations' (Social Services Inspectorate, 1998).
Towards a social model of intellectual disability
People with intellectual disabilities have often been devalued and disadvantaged
throughout history (see
Figure 1). Valuing People looks to redress this, on the basis of
four key principles:
The White Paper does not, however, avoid the challenges ahead (see Figure 2).
The emphasis is now firmly on issues of rights and responsibilities, social
care models, and social inclusion and citizenship; but there are potential hazards.
The move away from a biomedical model of disability and towards a social model
has meant that in some areas the NHS has withdrawn attention and resources from
intellectual disability. This is particularly problematic as the proportion
of people with profound, multiple disabilities living into adulthood has greatly
increased in the last 20 years, as has the number of those with complex challenges
such as autism. The new primary care trusts (PCTs), which could be a major force
for good in working with individuals and their families, are under financial
pressure and seem to be struggling to cope with a complex commissioning agenda.
Organizational divisions in local authorities have led in some areas to a decline
in the good practice that was developed in the 1980s. Resource constraints in
local authorities and the NHS have resulted in a tightening of eligibility criteria,
leaving a number of vulnerable people with inadequate services.
Positive working relationships between primary care, secondary care and social
care are essential in assisting individuals and their carers to achieve valued
lifestyles. One of the ironies of the current situation in the UK is that, in
large measure, we know what works, but good practice is still not being developed
into standard practice.
Tracing history
The philosopher George Santayana famously pronounced that 'those who forget
the past are condemned to repeat it'. While it is easy to sentimentalize the
past, there is little doubt that in the world-view of the pre-enlightenment
age, intellectual disability and mental illness were recognized as having some
value in society (see Gilbert and Scragg, 1992; Race, 2002; Atkinson et al.,
1997; Ryan and Thomas, 1987). Monasteries throughout medieval Europe provided
asylum and care for people with intellectual disabilities in a system sometimes
described as 'the first welfare state'. While this was usually a caring approach,
it was paternalistic and lacking in any developmental process, with those cared
for conceptualized as 'children' and 'objects of pity' (see Wolfensberger, 1992).
This changed radically in the 18th and 19th centuries as the 'Age of Reason'
and the Industrial Revolution brought in a more individualistic and utilitarian
approach. Irrational behaviour was perceived as a threat, and lack of economic
productivity was seen as a burden on society (see Figure 1). The ideas of Charles
Darwin brought to the fore themes of racial fitness, which led to a powerful
and pervasive eugenics movement in the 19th and early 20th centuries. This was
discredited only when the Nazi regime interned and then annihilated thousands
of people with intellectual disabilities and mental health needs.
In the UK, the local authority 'colonies' for disabled people were transferred to the NHS in 1948 but they remained isolated from mainstream developments in healthcare. The exposure of abuses in the long-stay hospital system - e.g. at Ely Hospital, Cardiff, in 1967 - provoked calls for change and led in part to the 1971 White Paper Better Care for the Mentally Handicapped. Targets were set for community resources in both residential and day services, but there has always been a shortfall. While some regional health authorities worked collaboratively with local authorities to set up progressive service models, others used the massive increase in availability of social security funds in the 1980s to 'decant' residents into often unsuitable and unsupervised private places. Although the NHS and Community Care Act 1990 placed a greater emphasis on social care and a more focused approach, it also led to very tight resource parameters as local government funding failed to meet the increased life expectancy and higher rate of dependency levels of people with intellectual disabilities.
The social perspective
The disabilities and experiences of individuals are often much more to do with
society's attitudes than the original impairment. Vital to the whole issue,
as the historical perspective shows, is the notion of citizenship and social
inclusion. The Government's Social Exclusion Unit defines the concept as 'a
combination of linked problems … that lead people or places to be excluded
from the mainstream' (Social Exclusion Unit, 1999).
Recently, the newly formed Social Perspectives Network defined a 'modern social
model' for the connected area of mental health. Key factors included the need
to understand and relate to the complexity of human health and well-being, and
how social and biological factors interact in the construction of health (Duggan
et al., 2002).
Social care and social work
Within this overall framework sit both social care - 'the function of supporting
people to lead independent lives' (Behan, 2002) - and social work, with its
emphasis on using the self and personal skills in order to empower individuals
and groups to work towards purposeful and positive change (see Thompson, 2000;
Gilbert, 2003). As the revised British Association of Social Workers Code of
Ethics points out, 'principles of human rights and social justice are fundamental
to social work' (BASW, 2002).
Identifying what users and carers want
In a highly competitive and discriminatory society, individuals and their families
can become trapped in a negative spiral of low expectations and poor outcomes
(see
Figure 3). Many individuals experience double or even triple discrimination
through gender, race or sexual orientation and/or additional health needs (see
Chamba et al., 1999).
From the outset, parents need a speedy and accurate diagnosis, sensitively delivered
and followed through with ongoing support (see Gilbert and Hunter (1982) and
pages 47-8). As parents do not always need or want continuing follow-up by a
social worker or community nurse, contact around predictable life events (see
Gilbert, 1985) is one way to ensure that major hurdles, such as the complex
transition from childhood to the adult world, are successfully negotiated.
As they get older, people with intellectual disabilities will inevitably
develop different perspectives from those of their parents. While people with
intellectual disabilities will increasingly require assistance to access mainstream
services where appropriate, carers need support and sometimes respite from the
caring role. The recent Mencap report No Ordinary Life (2001) demonstrates
vividly how difficult life is for carers.
Services
Assessment
Assessment has always been a primary social work task, undertaken in a holistic
way by staff who consider the individual within their familial, community and
social context. The ethos is of empowerment and promoting independence - 'working
with' rather than 'doing to'.
Both users and carers want the emotional and psychological issues in their
lives to be addressed, and practical problems tackled. Since the NHS and Community
Care Act 1990 (fully implemented on 1 April 1993), the emphasis has tended to
be more on the practical (e.g. procuring packages of care through the process
of care management, assessing need, care planning, implementing the care plan,
monitoring, reviewing, reassessing), perhaps to the detriment of the interpersonal
approach. To some extent, Valuing People has redressed the balance with
the introduction of person-centred planning (see National Development Team,
2002; Swinton, 2001). This is not a new concept, but one reshaped in the light
of the White Paper. Local authorities have specific responsibilities for assessing
the needs of carers under the Carers (Representation and Services) Act 1995.
Advocacy and empowerment
Citizen advocacy and self-advocacy models have been developing over the last
20 years. Many people with intellectual disabilities derive strength from being
part of a self-advocacy forum, but as many individuals have difficulty communicating
their needs and aspirations, citizen advocacy remains an important component
of any service. Users and carers should not just be involved in their own service
plan but should be brought in to plan overall and to evaluate services for the
future (Beresford, 2002).
The Government is encouraging local authorities to increase the number of people
with intellectual disabilities using the Direct Payments Scheme (see Valios
and Aspis, 2002), which gives them direct control over the services they purchase
to meet the needs they themselves define.
A place to live
The last long-stay hospitals in the UK are due to close by April 2004 (see also
Hollins, PSYCHIATRY 2003: 2:8: 1-2), but this is by no means the end of the
story. Valuing People describes limited choices in housing; provision across
the country ranges from the conventional 24-bed local authority hostel, built
in large numbers in the 1970s on the grounds of economy, to supported living
schemes in which individuals own their own homes or are tenants of a housing
association, with outside support coming in as required. Margaret Flynn (1987)
speaks movingly of how precious one's own front door key is after years of institutionalization.
The place of village communities, which have a more protective ethos and are
usually sited in rural areas, is still much debated. Originally formed by parents'
groups, such communities have become more outward-looking in recent years. With
the rise in the number of people diagnosed with autism, the National Autistic
Society has been working with social services and health authorities on helpful
service models for those people with specialist needs. There is, however, a
worrying increase in the use of out-of-area placements by local authorities,
particularly for people with challenging needs, rather than the development
of local capacity to meet complex needs locally in full.
Day opportunities
When local authorities were building adult training centres (ATCs) as the main
day service in the 1970s, these were seen as a progressive and professional
approach to what had been a fragmented problem of inadequate or non-existent
care for adults, delivered in dispersed settings. Like all institutions, however,
they have largely become isolated and isolating for users (Gilbert and Scragg,
1992; Rooney, 2002). Valuing People requires local authorities to modernize
day services by 2006 and has produced recommendations for change in conjunction
with the National Development Team (Department of Health/National Development
Team, 2002). Many areas have successfully developed, for example:
One lesson from the USA is that many more people can get into and retain employment than has previously been thought possible in the UK.
A valued lifestyle
No single approach is an end in itself. Sarah Rooney (2002) remarks that 'work
is not a panacea for loneliness, or a guarantee of companionship'. Similar issues
relate to respite care (see Oswin, 1984), in which it is vital that the service
attends to the emotional and social needs of the child or adult as well as the
respite requirements of the family. One of the main challenges that remains,
even when services are successful, is the issue of developing valued friendship
networks other than with immediate family and staff, in a society where difference
still creates barriers (see Richardson and Ritchie, 1989).
In essence, the innate dignity and value of each individual must be considered
at all times. One of the most powerful statements of the past few years has
been the drama, art and poetry (see Atkinson and Williams, 1990) that results
as people with intellectual disabilities say 'know me as I am'.
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FURTHER READING
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Wolfensberger W. The Principle of Normalization in Human Services. Toronto:
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| This article was first published in Psychiatry; Volume 2:9, September 2003 and is reprinted with the kind permission of the Medicine Publishing Company. |