Models of community care in the UK: past and present 

“Change within services for people with intellectual disabilities is often represented in a manner that denies the possibility of historical continuity” (Emerson and Stancliffe 2004, p.23)

In this article I will first summarise the model of community care proposed by Jack Tizard over 40 years ago. I will consider the extent to which this model has been implemented and developments since. I will review the strengths and weaknesses of current models, as exemplified by Valuing People, considering these in their historical context.
 
In 1964 Jack Tizard noted that “institutional policy for the mentally subnormal has remained virtually unchanged for the best part of a century” (Tizard 1964, p.156). At the time there were, in England and Wales, almost 60,000 people with learning disabilities (including some 7000 children aged under 16 years) in large (mostly 500 beds plus) institutions, mainly rurally located and some distance from the areas that they served (King, Raynes et al. 1971). These were (en)closed institutions which generally sought to provide all medical, social and educational services within their walls, and had no involvement (other than that of hospital admission) in service provision for those people with learning disabilities who did not live in the institution. Tizard went on to note the “many disadvantages of large institutions” including the institutionalization of both staff and residents, their professional isolation and the way in which their location and other features discouraged continuing contact between residents and their families. He outlined an alternative pattern of service provision in which:

•	all people with learning disabilities would be supported locally;
•	residential care would be provided in small, locally-based units; 
•	education would be part of the general education system, in special schools or classes;
•	the focus of day-time support for adults would be work, using mainstream vocational guidance systems to place “10-20%” in open employment, with most others attending sheltered workshops;
•	different departments (e.g. health and social services) would work together through joint staff appointment, joint training and use of joint regulatory mechanisms.

In retrospect, this is an interesting prescription for a number of reasons. First, it has never been fully achieved. Even as we come close to the point of complete hospital closure we continue to have large numbers of people supported far from their local areas in circumstances which have many institutional characteristics. Similarly, Tizard’s “target” for open employment (informed by research he had done on vocational training) has yet to be achieved. Second, the prescription anticipates the partnership agenda and shows how long the problems of different agencies working together have been apparent. Third, Tizard also attempted to quantify his proposals in terms of the approximate numbers of places required in a population area of 100,000 on the basis of the epidemiological research carried out by himself and others. Fourth, many of the themes underlying current service development (see below) are already present in Tizard’s prescription. Tizard is advocating the development of a comprehensive, local service closely integrated with generic health, education and social services. His proposals are, however, much more prescriptive than would now be acceptable. He identifies work as the day activity, there is no apparent role for significant choice over where or how to live and the focus is one of group-centred rather than person-centred planning.

Tizard’s proposals influenced the development of alternative residential facilities in the Wessex region of the South of England during the 1960s and 70s. This was the first attempt in the UK to completely replace the functions of the traditional long-stay hospitals. As described by Felce et al (1980), 25-place Locally Based Hospital Units, first for children and later for adults, were developed and evaluated. They were found to achieve at least as good and often better standards of care than those in traditional hospitals. Of course, even before these results were published, such units were already seen by many as too big and institutional and the first staffed houses were developing in Wessex and Wales. As well as representing a logical progression towards more ordinary living (King's Fund Centre 1980), these developments were strongly driven by the philosophy of normalisation, especially as advocated in this country by CMH (Campaign for the Mentally Handicapped which later changed its name to VIA – Values into Action) (e.g., O'Brien and Tyne 1981). The success of such developments (and the success of similar alternative models in other countries e.g., Thomas, Firth et al. 1978) in providing for people of all levels of disability has been noted as a major factor in the increasing speed of deinstitutionalization during the 1980s (Mansell and Ericsson 1996).

Most developments during the 1980s, however, continued to be based on congregate (albeit small group) care. Staffed houses sometimes contained up to 8 people and, although evaluated overall as providing significantly improved quality of life (Emerson and Hatton 1994), there was considerable variation in outcomes and, at times, few differences to be found from institutions (Mansell 1996). While individualisation of care was a central concept in many new services (e.g., Blunden 1980) it was not till the second half of the 1980s that attempts were made in the UK to genuinely plan services around the person (e.g., Toogood, Emerson et al. 1988), rather than, in effect, “tailor” existing services. The success of these services (Emerson and McGill 1993) and the attractions of supported living more generally (Kinsella 1993) have driven, in a manner analogous to deinstitutionalisation, the development of policy that suggests person-centred planning should be the norm rather than the exception. Such patterns of service provision, however, have continued to be exceptional rather than typical with the majority of people with learning disabilities in publicly-funded residential care living in relatively large groups (Felce 2004), attending even larger congregate day services (Department of Health 1999) and with little evidence of their service provision being planned on the basis of individual needs or preferences (Department of Health 2001).

This picture of services for people with learning disabilities at the turn of the century was the starting point for the national strategy outlined in Valuing People. One of the most distinctive aspects of Valuing People is its relative complexity. It takes on the perhaps impossible task of identifying what needs to happen across all aspects of all learning disabled peoples’ lives. While, inevitably, this has resulted in criticisms from advocates of particular sub-groups or particular topics (e.g., PMLD Network 2002), it has inevitably acted as the important force now driving the process of change. Such a process of change has to operate, if Valuing People’s vision is to be delivered, across a very wide range of themes. In short, person-centred planning and provision has to support: use of mainstream services, getting and keeping a job, developing friendships and partnerships, home and family life; in a manner which: caters for all, is guided by the views of service users and family carers, is flexibly funded and provided; and produces “services” that are: innovative and evidence-based, well-regulated; resulting in: a better quality of life for people with learning disabilities and their families. 

Picking out these themes at greater length:

•	Person-centred planning and provision…
Its salience in Valuing People and in the work of the Valuing People Support Team means this has to come first, not least because it is clearly an approach that is entirely non-specific. It can be used to help support an individual across the whole of their life or to focus on daytime needs, or family support etc.

…to support:

•	use of mainstream services,
Community care is no longer to be separately organised. If people need transport they should be supported to get the bus, if they need to see the Doctor they should be supported to access their GP etc. Some parts of this agenda are, of course, bigger than others. Inclusive education is not discussed extensively but underlies the agenda for children with learning disabilities and, increasingly, should be seen in a context of lifelong learning.
•	getting and keeping a job,
An important and under-developed component of daytime activities with less than 10% of people with learning disabilities employed.
•	developing friendships and partnerships,
The important social functions of day services and the frequent social isolation of people with learning disabilities are both noted in Valuing People.
•	home and family life,
Both those of the family carers of children and adults with learning disabilities, and the new partnership and parenting responsibilities that adults with learning disabilities may take on.

in a manner that:

•	caters for all, 
While widely criticised for failing to attend sufficiently to the needs of people with autism, people with profound and multiple learning disabilities, people with challenging behaviour etc, the continued determination to state publicly that “all means all” has been noteworthy.
•	is guided by the views of service users and family carers,
Throughout, the commitment to access, from the government down, has been probably the most striking aspect of the whole process.
•	is flexibly funded and provided,
Not just through direct payments but also by drawing in generic funding (employment, transport, supporting people and so on) that will be spent by an increasingly mixed economy of care providers.

and produces “services” that are:

•	innovative and evidence-based,
By definition, new models must be innovative but, as the wider health and social care agenda shows, neither new nor old models will be taken on trust.
•	well-regulated,
Through both the sensitive application of formal regulatory procedures (e.g. CSCI) and the more informal benefits to be gained from the increased commitment to advocacy.

resulting in:

•	a better quality of life for people with learning disabilities and their families.
The perennial bottom line though now with more emphasis on its measurement through the satisfaction and happiness of service users and their families.

The above brief historical review allows consideration of the present in the light of the past. A number of continuities between Tizard’s vision of a local, comprehensive service and the Valuing People vision are readily apparent. The notion that people should be supported locally, for example, is one of the four underlying principles of Valuing People (“social inclusion in local communities”, p.10) just as it was part of Tizard’s proposals and has informed service models in the interim. It might be argued, however, that the current commitment to local provision is rather less comprehensive than in the past with the White Paper stating that some people “who present very severe behavioural challenges” (p.67) and “adults with autism…who require intensive treatment and support” (p.102) may be unable to access local services. Valuing People also supports the availability of the choice to live in village and intentional communities which, inevitably, will not exist in most local areas.

Discontinuities are also clear, most obviously in terms of the position given to “choice” by Valuing People, also as one of its four underlying principles. While part of the rhetoric of normalisation in the 1970s and 1980s, notions of choice do not figure greatly in Tizard’s 1960s vision (other than in respect of parental choice to take up residential care) and are more apparent by their absence than their presence in the lives of most people with learning disabilities today. Even relatively recent policy changes (e.g., the decision to completely close institutions) have overridden any right to choose to remain where they were for the people being resettled. The central place given to choice, therefore, is of some interest and seems likely to reflect its position on broader political agendas (e.g., Department of Health 2000) more than its logical necessity. Just as in respect of these broader agendas, the importance given to choice can be criticised as diverting attention from the importance of providing decent services for everyone (6 2003).

A second discontinuity relates to the role of strategic planning in the development of services. As noted above, Tizard’s proposals for service change attempted to quantify the number of “places” required in local day and residential services. Indeed, he saw this as a necessary part of making such proposals – “it is not possible to consider the organisation of such a system of education, training, treatment and care without making an estimate of the numbers for whom it would have to be provided” (Tizard 1964, pp.165-6). In contrast, Valuing People identifies no such estimates and fails to provide a strategic plan for the development of services. Felce (2004) has made a similar point and has noted that the absence of strategic planning (as evidenced, for example, by his assertion that current national policy contains not a single quantifiable provision target) makes it much more difficult to “anticipate changes in the extent of needed service provision and associated financial investment” (p.28).

The new models of care made explicit in Valuing People clearly have many strengths. In particular, most people (with or without learning disabilities) would prefer that they were able to plan and control how they live and spend their time. New models based on person-centred planning and direct payments seem to offer the real possibility of this happening. Further, the individual’s control over how to live is not, in principle, limited to the traditional models of support provided to people with learning disabilities. This is not just about picking from fixed options (hostel, group living etc) but about coming up with your own options. The flexibility built into the system is such that changes of mind can, in principle, be managed - the young person living on their own with domiciliary support who decides that she actually wants to live with some friends can take their direct payments elsewhere without the “permission” of the service provider. 

These are major potential strengths but they should not prevent us from noting the potential weaknesses inherent in new models. Following on from those already mentioned I would like to draw attention to two such. First, for many people with learning disabilities the strengths of new models remain only of theoretical relevance. Many people simply do not have and are not encouraged to have the opportunities outlined above. Is this just a matter of time, of waiting till everyone understands what they have to do and gets it going locally? I am not sure that the necessary drivers for local implementation are yet in place. In particular there remains no evidence that such models can be implemented comprehensively in a local area at no greater cost to existing provision. Consequently, many local authorities remain nervous about taking the steps necessary to bring about large-scale change and concern grows that person-centred planning will fail to overcome “the need for service organizations to control expenditure” (Mansell and Beadle-Brown 2004, p.5). We need a systematic approach to the development and evaluation of comprehensive local implementation of new models that will either demonstrate and create the demand for additional resources or demonstrate that they are not required. In other words, we need a strategic planning context analogous to that presented by Tizard in the 1960s.

Second, just as legitimate questions were asked about the extent to which “community care” was setting people adrift in a community that didn’t care, so questions need to be asked about the extent to which initiatives such as direct payments successfully remove from public bodies real responsibilities for the welfare of their citizens and will result in asset-stripping within these bodies. If a significant proportion of people with learning disabilities are using direct payments will this allow local authorities to reduce their planning to meet local needs (on the basis that these are now determined and met by the individuals themselves), and stop employing specialist staff (since these will now be “bought” directly by individuals)? Will we end up with an army of low-paid support staff without the protection inherent in employment by a public body, with no access to training (since their “employers” will not be able to afford it) and with little regulation and supervision (since their supervisors in many cases will also be the people to whom they are providing support)? In other words do apparently positive initiatives like direct payments “scale”? We should certainly not embark on the widespread implementation of such a dramatic change without careful evaluation of its various impacts (for a critical analysis of direct payments see Spandler 2004).

Why did I support, self-evidently, the abolition of institutions and the development of community alternatives? Because it was obvious to me (as to so many others) that I shared humanity with those imprisoned in the institutions. That recognition came most easily from personal contact but also from seeing (through the work of others) what could be achieved by people who, in a sense, represented the lost potential of the many thousands who had needlessly spent their lives in institutions. In the 1960s and before many people with learning disabilities were suppressed by a system that gave them no scope for development, oppressed by a system that systematically abused them and that, worst of all, was able to justify its missed opportunities and its inhumane practices by the belief that those being done to were not really human and could do no better. The (hi)story of the last 40 years has been primarily about the increasing recognition of the full humanity of people with learning disabilities. But this begs the question – to what extent do we still not accord them fully human privileges? Perhaps the best evidence comes from the continuing differences in broad indicators of quality of life and relationships (Emerson and Hatton 1994) such as wealth, health, employment, friendships and partnerships. In paraphrase of Tizard (1972), substantial progress in these areas requires not just that we focus on the individual characteristics of each person with learning disability and their hopes/aspirations but that we attend as much to the social institutions and environments which continue to keep them as not quite adults, socially isolated, mostly unable to create their own families, unemployed, unhealthy, poor and abused.

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