Context: History of service provision

Historical background to learning disability nursing.

The history of learning disability goes back as far as we have been able to write about the human condition . In pre industrial times it is suggested that people with learning disabilities were often part of communities where literacy and numeracy were not a necessity or priority. As such ‘services’ for people with learning disabilities in any formalised structure did not exist.  During the Victorian era the rise of the institution brought with it a range of views and beliefs about people with learning disabilities. Not only did the institution provide society with an opportunity to remove ‘undesirable individuals’ from society, but also the opportunity for segregation of the sexes and the stifling of human rights for people with learning disabilities.

The notion of community care and maintaining people within their own homes rather than providing residential care has been spelt out since the early 1950s, even though socio-demographic changes suggest changing family structures will lead to declining numbers of potential care givers (Allsop, 1995).  One of the attractions of community care for the Government may have been that it appeared a cheaper model, but this was also supported by a societal view that community care was a more appropriate on ‘humanitarian and moral’ grounds (Royal Commission, 1957).

But, whilst public support for community care for the elderly grew in the 1950s, the numbers of people in ‘sub normality’ hospitals continued to rise. Perhaps due to ongoing eugenic views of many leading policymakers, not only did the institution provide society with an opportunity to remove ‘undesirable individuals’ from society but also the opportunity for segregation of the sexes and the stifling of human rights for people with learning disabilities. Eugenic concerns in the early post-war years supported the continuation of segregation for people with learning disabilities.

The development of community care for people with learning disabilities led to a number of related policy statements, including the Report of the Royal Commission (1957). This report recommended a parallel system of residential care, set up by local authorities, utilising small residential units of 20-30 places for people with learning disabilities. Politically this was supported in a speech by Enoch Powell, then Minister for Health, in 1961 advocating the ‘run down of mental hospitals’. Although this could be seen as an economic move for the Government, the Minister’s view was supported by sociological research into the conditions within institutions which described them as dehumanising environments with routines and structures that diminished the quality of life for those who lived there (Goffman, 1961).  The conditions in institutions were picked up by a number of Inquiry’s .

Whilst proposals for the development of residential units in the community were being suggested, a number of writers were proposing structures to divide those deserving of community care from those who were not. Dutton (1963) had proposed the division of people with learning disabilities into three distinct groups based on ability, with only the ‘top stream’ being suitable for a move to the ‘community’. Galloway and Garrett (1964) also advocated the grouping of individuals based on ability, suggesting three groups, those who required nursing care who would stay in the hospital system, those who needed control within a secure environment, and those who required ‘social training’ for whom community living was advocated. Despite the debate over who should live within the community and how this should be decided, much of the care during the 1970s remained hospital based, following a medical model.

However, public inquiries into abuse within institutions during the 1960s and 1970s (Howe report, 1969; Spencer et al, 1978) fuelled concerns about the appropriateness of institutional provision. Ham (1992) suggested that the Ely Hospital Inquiry led to major policy change within learning disability and contributed to the 1971 White Paper Better Services for the Mentally Handicapped (DHSS, 1971). It has been suggested that this was the first time changes in official policy were underpinned by clearly defined principles, reflecting current thinking about people with learning disabilities (Mitchell, 2000).

An element of the thinking underpinning the White Paper recommendations was rights based, supported by the 1971 United Nations Convention on the Rights of Mentally Retarded persons (United Nations General Assembly 1971 in Wolfensberger et al, 1972). Many argued that the White Paper, without the force of legislation behind it, would not put pressure on the providers of services (Race, 1995). Following the White Paper, Local Authority provision increased, but only a small number of hospital beds were reduced. This may have been due to Local Authorities increasing Day Services, not residential provision, as this could provide for larger numbers and was cheaper. The review also re-emphasised the need for joint planning of services between local Authorities and Health. This brought with it its own complications, and, in many areas, this is still not resolved some three decades later.

The Committee of Inquiry into Mental Handicap Nursing and Care was set up in 1975 under the Chairmanship of Mrs Peggy Jay with the task of examining the staffing of mental handicap residential care settings in the NHS and Local Authorities (Jay, 1979). The report findings have been described as radical (Rose, 1993), calling for the acceleration of community care, for an increase in staffing numbers and for management organisation to be streamlined. The Jay Committee report (Jay, 1979) carried a recommendation for the banning of any new construction or expansion of hospitals of 500 beds or more and a suggestion to increase Local Authority residential accommodation. Limited funding was available for this, however, and, where local authorities had a choice, many opted for the building of adult training centres which could provide for larger numbers than the small residential accommodation.

The Committee also recognised that the problems of institutionalisation were not confined to large isolated hospitals but could also manifest in small residential accommodation. ‘A purpose-built unit in the edge of town is not in our view ‘in the community’.’ (Jay, 1979, p.36). It is suggested that the Jay Committee is one of the few documents that has reflected a shift in philosophical approaches to the care of people with learning disabilities (Wolfensberger, 1983; Race, 2002; Mitchell, 2003). In the same year that the Jay committee reported Mittler produced his key text ‘People not patients’ (1979) linking rights for people with mental handicaps to the provision of appropriate resources, advocating the use of specialist resources within  communities and ‘better training for all staff who come into contact with disabled people’ (p10).

With this background the development of community care policies for people with learning disabilities occurred in conjunction with changes in philosophies of care for this group. The move towards deinstitutionalisation had already begun and government policies of community care were seen to be supporting these moves. Notions of rights of individuals, empowerment and choice were all seen to be in line with current policy.  Community care policies were also underpinned by the development of philosophies of normalisation (Nirje, 1973). As the concept developed, its definition began to include the enhancement of socially valued roles for people with learning disabilities (Hattersley, 1991). Wolfensberger, in 1983, used the concept of ‘socially valued roles’ to formulate a change to the concept of normalisation which he named ‘social role valorisation’ (SRV). He argued that achieving socially valued roles in society would enhance the image and therefore acceptance by the non-disabled society of people with learning disabilities. The main means of achieving socially valued role would be the ‘fitting in’ of people with learning disabilities into the dominant value system within society.

A number of issues arise from this adoption of the principles of Social Role Valorisation (SRV). This perspective and that of normalisation appear to advocate values based on western culture, reflecting capitalism, materialism, competitiveness, individualism, and success of achievement within a nuclear family (Ni Ong, 1993). These values may require challenging and the views of people with learning disabilities should be sought to be certain that these are values that this group wants to aspire to. The danger in not doing this is that normalisation and SRV may come to represent a lifestyle valued by its exponents but not people with learning disabilities (Bayley, 1991). A fundamental issue relating to normalisation and SRV is that the route to acceptance in society for de-valued groups is seen through some kind of normality (Ryan and Thomas, 1980; Corbett, 1991), a concept that is ambiguous and constructed by dominant groups in society.

In relation to policy formation, the concepts of power and normality are important. Foucault (1977) links these together in suggesting that normalising tendencies (an example of normalising tendency is the idea that paid work is a prime moral value) are powerful and ever present in society, whatever policies are in use at that time. Many services for people with learning disabilities have used the principles of normalisation and SRV without challenging the values they reflect. Institutions can exist in the community and, sadly, life in group homes and day centres may also mean being at risk from victimisation and abuse at worse (Philpot and Ward, 1995), or, for many, community care can mean loneliness and isolation as social networks are often limited (Flynn, 1989). Many people with learning disabilities who live independently or semi-independently live in poverty, with no opportunities for employment. It is arguable that the values of materialism and financial independence held highly in our society are unachievable due to social circumstance rather than the individual’s learning disability.

Services, which have challenged the dominant community model, such as L’ Arche, and Rudolf Steiner-inspired facilities, have contested whether roles valued by a particular society are appropriate for people with learning disabilities (Bayley, 1991).

These ‘alternative communities’ have philosophies that acknowledge the unique contribution of people with learning disabilities to society, reflecting the stance that normalisation principles may disregard the right of people with learning disabilities to be different. Dalley (1992) has made the contrasts between normalisation and current social welfare ideologies – the notion of securing full rights for devalued citizens within the philosophy of normalisation is linked to collectivism, but there is a dichotomy, as the supporting of the status quo favouring family of quasi-family models of care and advocating competence and self-reliance are individualistic. It is argued by Dalley that this is intrinsically damaging for people with learning disabilities:

 

‘Historically, therefore, people with learning disabilities have been at the mercy of society’s view of them, the policies that are implemented, and models of service delivery adhered to, often with little opportunity to make choices for themselves. It is clear though that, since the inception of the NHS, even with the development of policies of community care that, as Race states, ‘power over the learning disability agenda has remained in the hands of the Department of Health’. (Race, 2002, p.35-6).

The models of care dominated by the NHS brought with them a group of workers based on the NHS model; nurses, doctors and nursing assistants who have been key in maintaining the medical model, even though the roles of these workers within the system have been consistently challenged. Understanding where learning disability nurses have come from historically, and the service models in which they work, is an important part of this study.