Social Care - Health Committee Contents

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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