Dr. Robin Jackson
Visiting Research Fellow, Centre for Learning Disability
Studies, University of Hertfordshire
In a recent paper the Chief Executive of the
National Development Team for Inclusion has made the sobering point
that people with an intellectual disability in the UK have achieved
little or no profile for most of the last twenty years (Greig,
2015). The author highlighted a meeting he had had with a senior
government official where he was personally informed that any
attempt to seek radical improvements for people with an
intellectual disability in the UK would fail as the numbers were
too small to warrant government action! This off-the-record
judgement may well have been shaped by a perception of this
particular population as having limited political leverage when set
against constituencies with a higher profile (e.g. people with a
Whilst it is clear that the various government
departments involved with education, health, social care and
employment seek to promote a policy of inclusion where people with
an intellectual disability are concerned, it is an unsophisticated
policy which takes little account of the profound differences
within that population. Kavale has pointed out that supportive
arguments for full inclusion have been primarily based on
ideologies with anecdotal case studies and testimonials, but not on
quantitative research evidence (Kavale, 2000).
The crucial point that advocates of the
inclusion principle miss but which earlier writers took pains to
stress is that inclusion is a philosophy and not a technology
(Tizard, 1964; Nirje, 1969). It is a system of values and beliefs
which should help guide, not dictate, thought and action. Thus
empirical examination should replace polemics: not to do so is to
engage in a massive programme of social engineering (Zigler, Balla
and Kossan, 1986). Zigler and Hall (1986) have argued that we
should avoid adopting an all-or-nothing attitude in any debate
about providing appropriate services for people with intellectual
disabilities. They noted that there are many forces at work that
depict issues as being either-or choices, driving out the middle
ground position. In their judgment anyone who polarizes the
situation by promoting one solution to the total exclusion of all
others does that situation and its complexity a disservice.
What is urgently required now is an approach
that is open, evidenced, and respectful. It is a system of values
and beliefs which should help guide, not dictate, thought and
action. This necessitates a sensitive and pragmatic approach, not
an inflexible and dogmatic one.
This paper derives from the report by The
Centre for Welfare Reform: ‘Who cares?’ The impact of
ideology, regulation and marketisation on the quality of life of
people with an intellectual disability
Marketisation of care
The reforms implemented following the ‘commercialisation’ of
care resulting from the National Health Service and Community Care
Act (1990) brought about far-reaching changes to the provision and
financing of health and social care in the United Kingdom. Market
forces received an enormous boost, ‘for-profit’ organizations
became increasingly active, notions of ‘best value’ became
increasingly relevant within funding formulae, and users of
services were more likely to be involved in decision making (Knapp
and Kavanagh, 1995). Market ideals as a key principle of public
service provision continued to be an acceptable feature of the
neo-liberal agenda pursued by New Labour. The marketisation of the
social care sector continues despite the acknowledgement, in one of
the first comprehensive reports on social care, that care services
run by the ‘for-profit’ sector in England are consistently
out-performed by those run by the ‘not-for-profit’ sector
(Commission for Social Care Inspection, 2005). However, with the
passage of time, competition is likely to favour those ‘for-profit’
companies that are able to maintain their competitive edge by
keeping costs low. Pollock (2005) has argued that this is likely to
be achieved through the recruitment of poorly paid, inadequately
trained and under-motivated staff; the implication being that
‘not-for-profit’ organizations will be squeezed out, leaving
commercial companies to dominate the market. Bakan (2004) has
convincingly demonstrated how for-profit companies operating in
deregulated systems invariably act in an aggressive, exploitative
and self-interested manner. Are there any grounds for believing
that care corporations will act differently?
A survey was recently undertaken by the
independent think-tank Centre for Health and the Public Interest
with the 211 local clinical commissioning groups (CCGs) which now
spend 16% of their care budget in the private sector and which have
a duty to manage, monitor and enforce the 15,000 contracts with
private providers (Gallagher, 2015). It was found that of the 181
CCGs that responded to the survey only 16 (9%) had imposed any
financial sanctions due to poor performance. Because of the
apparent reluctance of CCGs to enforce contracts, the think-tank
recommended that NHS England commission an independent audit of the
CCGs’ capacity to monitor and manage contracts with non-NHS
providers before any further major contracts are signed. What
appears not to be called into question is the practice of
contracting out services to the private sector.
A further consequence of the marketisation of social care has
been the growing marginalisation of professional workers (e.g.
doctors, social workers, educational and clinical psychologists,
etc.) in decision-making processes related to assessment and
placement. Decisions are increasingly being taken by local
authority commissioners for services (Care Service Improvement
Partnership, 2008). Thus a process of deprofessionalisation is
occurring in which the role of those with relevant knowledge,
expertise and experience and who are well placed to make informed
decisions concerning the individual needs of clients are being
sidelined. These changes appear to be driven by cost and not
quality of life considerations.
One strategy increasingly being deployed by a
number of care companies to tackle the issue of high staff costs is
the introduction of assistive technology to monitor residents. It
is argued in defence of this practice that it protects the
resident; acting as a safeguard, preventing abuse and encouraging
good practice. However, by adopting such technology it could be
argued that one is re-introducing some of the salient
characteristics of the total institution identified by Goffman
- individuals progressively losing their identity
- constraints being placed on basic liberties (e.g., freedom of
movement and action)
- life within a setting becoming routinised and closely
- staff maintaining a social distance between themselves and
If as a result of the introduction of
assistive technology the size of a staff team in a care home is
significantly reduced then this will limit the ability of the staff
to accompany residents should they wish to leave the care home in
order to go shopping, attend a recreational or social event or
visit friends. In other words, the financial advantage gained by a
‘care business’ in installing assistive technology may be at the
expense of curtailing the freedom of movement and action by
residents. This limitation of access to the outside world can then
lead to the creation of a quasi-custodial regime in which members
of care staff increasingly find their role changing from that of
carer to custodian.
The notion of the custodian is not farfetched.
In the late 18th century Jeremy Bentham, English
philosopher and social theorist, conceived of the construction of
the Panopticon - a particular type of institutional building. The
concept of the design was to allow a single person to observe the
inmates of an institution without the inmates being able to tell
whether or not they were being observed. Bentham saw the basic plan
as being applicable to hospitals, schools and asylums as well as
prisons. The Panopticon was intended to be cheaper than the prisons
of his time as it required few staff.
Whilst Bentham regarded the Panopticon as a
rational and enlightened solution to a societal problem, Foucault
(1975) saw the Panopticon as creating a consciousness of permanent
visibility which acted as a form of power. Contemporary social
critics have argued that such technology has allowed for the
deployment of panoptic structures throughout society (Elden, 2002).
Surveillance by CCTV cameras in public spaces in the UK is an
example of a technology that brings the gaze of some unknown and
external body into people’s daily lives. Whilst Foucault accepted
that the Panopticon was a form of architecture, it was above all
else a form of government. It was a way for mind to exercise power
over mind (1994).
Tunstall, a leading company in deploying
assistive technology in the care home sector, has claimed that it
is a cost effective alternative to traditional residential care for
people with complex needs. It asserts that such technology enables
“personalised care, choice, dignity and control” and provides the
user with an enriched experience. In one example cited by Tunstall
where assistive technology is in operation the physical environment
of the resident is equipped with sensors that monitor a range of
- telecare sensors to manage possible fire, flood or gas
- personal pendants to enable residents to request
- sensors to alert staff if a resident has fallen
- epilepsy sensors to reduce/remove the need for night-time
- environmental sensors to control curtains, heating and
- sensors to access automatic doors.
Depending on the ability of the individual,
residents can also access Walled Garden, a portal which
enables the user to pay bills, go shopping, contact their GP and
access social networking sites in a safe environment using easy
icons. There is an unconscious irony here in describing the portal
as a Walled Garden in that it conveys the impression of an
enclosed physical and social environment cut off from the world
And the comparison with Bentham’s Panopticon
is not far-fetched. Instead of one person sitting in the central
watchtower with a clear sight into all the individual cells, we
have one person sitting at a computerised central control console.
And it is only a small step to having CCTV installed in each room
to further monitor activity. What is disturbing is that this form
of provision is represented as personalised care, yet what we are
witnessing is a process of depersonalisation.
A further problem is the tendency to equate
technology with progress, when the contrary may be the case.
Objections to the use of assistive technology (including CCTV) are
not born of some Luddite tendency but from a fear that it may lead
imperceptibly to the reinstitutionalisation of vulnerable people.
Thus, before witnessing a further expansion in such provision there
should be research - not sponsored by companies promoting and
selling assistive technology - in order to assess its impact on the
quality of life of people with complex needs. This might be thought
a very appropriate topic for members of the Faculty of Psychiatry
of Intellectual Disability to explore and research.
The apparent lack of interest by government in
people with an intellectual disability, to which Greig (2015) has
made reference, is a matter of concern as the kind of issues
identified in this paper are likely to be ignored. But those who
have been made aware of the detrimental impact of marketisation and
the uncritical adoption of assistive technology on the lives of
people with an intellectual disability and who voice no concern
could be seen as complicit in the process of
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Moorgate Mill, Blackburn: a 20 bed
apartment for residents with complex needs.
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