Annex 2: New approaches to social care
For decades it has been recognised that caring for
people with long-term conditions and disabilities in institutions
(the successors to workhouses and asylums) is for the most part
inappropriate and even inhumane, denying people dignity and autonomy.
It has increasingly been realised that conventional
patterns of non-institutional care also, in their own way, place
unacceptable limits on people's lives. This has been almost entirely
due to ideas developed by disabled people themselves, through
disability politics and the disability movement.
A key idea to emerge from the disability movement
was that of the "social model of disability".
It was argued that disability was conventionally conceived of
in terms of a "medical model". This defined disabled
people by reference to their physical or intellectual impairments
and saw them as needing to adapt to the rest of society. The medical
model saw disabled people as: dependent upon interventions by
medical (and other) professionals to address what were seen as
their deficiencies or deviations from the norm; a burden to their
families; and objects of pity, condescension and charity. The
medical model was seen to have led to such dangerous notions as
eugenics and "social hygiene".
According to the social model of disability, it was
viewing disabled people from the perspective of the medical model
that actually "disabled" them, not their impairments
as such. It was argued that disabled people were as entitled as
anyone else to live full, autonomous and independent lives. To
deny this was no less than a form of discrimination, a denial
of civil and human rights, a form of segregation or Apartheid,
as unjust as discrimination on the basis of race, gender or any
other arbitrary characteristic. (The term "disablism"
has been used, by analogy with racism.) The onus was very clearly
on society to accommodate itself to disabled people, not the other
way around.
On the basis of this perspective, it is argued that
social care services must be "person-centred",
starting out from the perspective of the individual person rather
than the requirements of the service itself. Each person's particular
needs, strengths, preferences and other attributes must be fully
taken into account. The care and support for each individual person
should start out from their own conception of what they need to
become full, equal members of society, not from preconceived notions
based on their particular impairment. Each person must be recognised
as best placed to make decisions about their own life. The aim
of care and support should be not just to meet basic personal
needs (those that are typically characterised in terms of personal
care and practical help) but to facilitate the fullest possible
participation in social, educational, economic and other life
experiences and the exercise of self-determination.
A crucial insight arising from this perspective is
that social care provision should be designed to help meet individual
people's particular needs and bring about desired outcomes for
them. Conventionally, however, social care has been arranged and
structured according to other considerations. People who use services
have been categorised according to their particular condition
(age and frailty, a learning disability, etc.), with presumptions
made about needs and desired outcomes on that basis. Needs have
been arbitrarily divided up (Personal care Activities of Daily
Living, Instrumental Activities of Daily Living, nursing care,
etc.), in line with administrative and funding arrangements. Menus
of fixed forms and types of service (care in a residential home,
homecare, meals-on-wheels, etc.) have been the only options available
for meeting needs and delivering outcomes.
This insight informed the concept of "self-directed"
or "user-directed" care and support, which is
associated with the "independent living" movement.
The central principle of self-directed care and support is that
the person using the service is given control over when, how and
by whom that care and support are provided. The person using the
service thus exercises choice and control, rather than being a
passive and dependent recipient of services provided or commissioned
on their behalf.
For the independent living movement, the indispensable
means of bringing this about is Direct Payments, i.e. replacing
services in kind with cash payments to the person using services,
which they can use to meet their needs. Direct Payments are often
used to enable people to act as a "micro-employers"
of their own Personal Assistants.
Recognition that this is not appropriate to all people
who use services has led to the development of Personalised
Budgets. These enable each person to manage for themselves
the budget allocated to provide them with care and support (with
the option of being helped to do so by others, or handing control
of the budget to a third party to manage on their behalf). The
budget can be taken partly or wholly in the form of a Direct Payment,
but need not be. The term Personal Budgets has been used
to describe such budgets where they consist only of social care
funding and Individual Budgets where they also include
other streams of funding (although there appears to be some confusion
over the use of these terms).
Another idea associated with new approaches to social
care that has gained particular currency in recent years, although
it is not new, is that of "co-production" (sometimes
referred to as "co-creation" or "parallel-production").
According to this, people who use services and those who provide
them can work together to make services more responsive, effective
and suited to people's needs. Co-production can be seen as distinct
from (although not necessarily at odds with) other, more individualised,
entrepreneurial, "managerialist" and "consumerist",
approaches to involving people who use services.
The term "personalisation" is now
often used as a catch-all term for new ways of thinking about
and arranging care and support.
The social model of disability has had a significant
impact on the language and terminology used in social care. The
term "disabled people" is preferred to "people
with disabilities", as the former is seen as expressing the
idea that it is society that disables people not their impairments
as such (however, the terms "learning disabled people"
and "people with a learning disability" are both commonly
used). The term "service user" is seen as too tied to
old models of social care and the alternative "people
who use services" is now increasingly used. The term
"care" is sometimes criticised as having connotations
of passivity and dependency; the alternative terms "support"
or "care and support" are now increasingly being
used.
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