Family And Community Care

SUPPORTING FAMILY AND COMMUNITY CARE Malcolm Payne Professor of Applied Community Studies, The Manchester Metropolitan University, 799 Wilmslow Road, Didsbury, MANCHESTER M20 2RR. Telephone: UK+(0)161-247 2097, FAX: UK+(0)1204 853499, E-Mail: [email protected]

Introduction Recently, I visited a colleague in another University in Bristol in the south-west of England. She works in a campus on the edge of the city, surrounded by grassland in imposing buildings more than a hundred years old. The University moved into these old buildings a few years ago. I used to live in Bristol myself 20 year ago, and visited these building regularly as part of my work. At that time, they were a psychiatric hospital for mentally ill people. Some patients with acute illnesses were admitted for a few weeks, then discharged home again. But many of the patients had lived there for many years, some for most of their adult life, but now they have been moved out to live outside hospital, and the buildings have been turned into a University. This is in response to a government policy of ‘community care’, which has been strengthened and developed in the 1990s. This is not simply a British phenomenon, but a worldwide trend (Brown, 1985; Ramon and Giannichedda, 1988). It affects not only mentally ill people, but many groups of people in need of long-term care. Neither is it solely a government or political policy. Professional developments have also contributed to the movement towards this policy. It also responds to the personal preferences of many individuals and to the wishes of communities in many different countries. The basic assumption which lies behind such policies is that people who need long-term care prefer to remain in their own homes and receive help from family and friends in the community around them. It is also thought that this brings benefit to the family and community in promoting mutual support and strengthening society generally. It often seems more cost-effective too, but this is now seen as a false argument. This paper focuses on the movements towards care policies of this kind and the form of social work practice needed to implement them. The fundamental social work issue is whether people can be cared for in the community, whether the community wishes to care for them and is capable of doing so. If there are public services, can they be interweaved with informal and community care? The following discussion , which draws from my book Social Work and Community Care, (Payne, 1995) is divided into three parts. First, I examine British community care policy and its development as an example of the worldwide trend towards this kind of community policy. Then, I look at some of the problems that have arisen with the policy and its implementation. In the third section, I want to explore the professional implications of introducing such policies: what are the implications for our practice as

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social workers? In doing so, I want to examine widespread practice policies such as case management, multiprofessional work and networking. These three numbered sections are then followed by a brief conclusion, making suggestions for applying these issues to different contexts.

1

British community care policy

The reason why we remark on community care is that as societies have become more complex, their response to dealing with social problems has been to create institutions for people who seem to need help. Community care policies represent a shift away from institutional care as the main policy for dealing with social need. However, because the reasons for preferring institutional care were not always concerned in the first place with providing good care, the reactions to this shift have been complex and need careful analysis to understand them. There are four issues to be considered. The first is whether we should consider institutional care to be ‘good’ care, and why we think community care might be better. Arising from this, the second point, there is the question of the idealisation of ‘community’ and ‘family’ and why this takes place. The third point is the question of cost. Fourth, there is the question of the relationship between formal and sometimes official or government action and informal and non-official and non-government action. The view is widespread around the world that institutional care is undesirable as a way of providing for social needs, but this has obviously not always been so, because there are many institutions in social provision around the world. We therefore need to ask why institutions have been used and why they have fallen out of favour. In small communities, particularly rural communities, few social problems exist and they are managed by members of the community as they arise through collective action. As communities become larger and more complex, not all problems can be handled in this way because people are more distant in their social relations, they may travel away from their families, so that support is lost, large-scale industry, motor transport and the like tend to create problems of ill-health and disability as a result of accidents and since more people are together, social problems are accumulated, too. So there seems to be a larger problem as the result of urbanisation and industrialisation. It is out of these general social processes that the need for a wider range of helping professions, including social work, has been appreciated. At the beginning of this process, putting people in institutions seemed a useful approach. First, it appears cost-effective, because a greater number of people may be cared for by a relatively smaller number of staff than if carers had to visit them in their own homes and communities. Specialist staff can be available more easily. Also, for people with disabilities a special building can be provided and adaptations do not need to be made to many different homes, which are then unnecessary for the next people who live there. Second, people in institutions are out of the way. They do not offend or upset others by their behaviour or disabilities, which many people find distressing when they see them. They can be protected from being exploited by others, for example people with learning

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disabilities need not be sexually exploited or have their money taken away from them, and disabled elderly people cannot be exploited by offenders. If their behaviour is dangerous, other people can be protected from them. This does not mean only violence or disturbed behaviour, although this can be a problem. Elderly people or people with learning disabilities who cannot manage being a pedestrian in modern fast traffic, for example, may be a hazard to other road users. However, in the history of many countries there is another reason why people are segregated into institutions. That is, institutions are used as a threat to exert social control over working class populations. If your behaviour is strange, you may be put in a mental hospital, if you are elderly and do not look after yourself, you may be put in a home, if you do not care for your children properly, they may be taken away from you and put in a home, if you misbehave, you will be sent to prison, In the 19th century, many European countries had workhouses for poor people. If you were unable to provide for yourself through employment, you could not receive financial allowances, but had to enter these institutions, which were specifically designed to be unpleasant, as an incentive to avoid using them. The use of institutions as a threat to achieve social control, and their association with people who are segregated from society for public safety or their own, means that institutions came to be associated with the mad, the bad or the inadequate. They were not known as people, but as special groups. So the public does not know these people and their problems, perceives them as a problem and is not concerned if they are poorly treated in the institution. Because people dislike leaving their own family and community to live in such places, they become separated from normal life and the standard of care is very poor. Because they are separated from normal life, the people in them learn to rely on the institution, and do not practise the skills needed for ordinary life. They lose the ability to deal with modern life. We call this becoming institutionalised. Thus, in institutions for long-stay care, people lose their motivation for personal development and improvement, and they become a burden on society rather than a contributor to it. While all this is true, it does not mean that institutions are completely irrelevant or useless. Certain needs can only be met by the specialist services or protection offered by an institution. It is also possible to organise institutions so that they provide training and treatment which helps people move forward (Kennard, 1983). You can also reduce the illeffects of institutionalisation by institutional policies such as normalisation (Brown and Smith, 1992) which plan life in institutions in informal, supportive and caring ways to mimic ordinary social relationships outside the institution. The second issue is that, related to all this, we have tended to idealise the ideas of ‘family’ and ‘community’. We associate warmth and happiness with close interlocking relationships with kin and with people who share our interests or our lives. This is sometimes the reality. However, we also know that most murders and much conflict and anger takes place within families, and that neighbourhood disputes can be very serious and hard to resolve. The importance of family and community relationships to most of us means that people who have no family or community or are separated in some way from it are even more excluded than if family and community were not so important. So whereas

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in principle family and community is always the preferred way of resolving social problems, as these social structures break down under the pressure of modern societies, people become more isolated and we have to do more to help isolated people into contact with others (Bulmer, 1987). We return to the third issue, the problem of cost. Family and community care appears very cost-effective, compared with professional care, so most societies go along with the assumption that it is to be preferred. However, research shows that close family and especially community networks grew up in times of hardship and distress, when you stuck together or you did not survive. So they may not actually have been preferred, it was just that there was no alternative. As societies become richer and more able to provide a satisfying lifestyle for their people, there is less reliance on family and community networks. Moreover, this is true for Britain, people like to be self-reliant, or rely on people who are very close to them for personal care and support. I suspect this may be true everywhere, as well as in Britain. People come to expect that the richer society around them will support them, rather than their having to rely on the personal exchange which was ore relevant in adversity. Also, although family and community care looks cost-effective, compared with professional care, it imposes an immense burden on the family and community. As a social worker, I was constantly amazed at the stress and struggle that families would take on to care for one of their family members, and the support that would often come from neighbours and friends. However, there are long-term consequences for the health and future lives of carers. They often have to give up work: this lowers their income, reduces their chance of building up a pension or savings for the future, so that their old age is more stressful as well. Looking after a disabled or elderly family member at home often disrupts children’s development and lifestyles. So there are costs, but they are hidden, long-tern, non-money costs. Although there are aspects of providing social care in institutions which are cost-effective, and I mentioned these above, cost problems escalate. When you first build the institution, it is relevant to the care that you planned, and it needs little maintenance. Also, if there is inflation in the economy, the loan that governments usually take out in order to build an institution loses value quickly. However, over the years, the institution retains the same form, but treatments and care systems change, and the building has to be adapted and updated, so it becomes more inappropriate. By the end of a hundred years, many of Britain’s old institutions, like the hospital I mentioned at the beginning, became very expensive to maintain. Also, as they become more expensive, institutions suck in more money, and there is little money available for additional or alternative services in the community. Since these are not available, more people have to use the institution, because these are the only forms of care available. While institutional care is cost-effective for people who have severe problems, if people with minor problems have to use them because there are no lowerlevel services available, you begin to spend more on such people than they really need. Also, because people in institutions become ‘institutionalised’, as I have suggested, they become dependent on the institution and cannot leave, even if they would be able to care

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for themselves with training and support. So they stay, and as more people come into the institution, they create overcrowding and the system in the institution has to become more routine, so the new people who come in become dependent and so it goes on. Eventually, therefore, institutions become too expensive. Finally, the fourth issue, there is the question of formal and government services as opposed to informal care and non-government services. Since the middle of the century most European social services have been provided or financed by governments, and an increasing element of public expenditure has gone on various kinds of health or welfare expenditure. The increasing cost of this has made management of economies more difficult. Although it is an exaggeration to say that the burden is impossible, one political stance which has been influential in the 1980s argues that this is so. However, this financial argument has become mixed up with an argument that governments providing care through formally organised services, managed by official bureaucracies creates dependency on the state, and discourages appropriate independence and selfresponsibility. Also, it is argued that state bureaucracies are often too inflexible to provide sympathetic and sensitive personal care to people. This is better done through family and community care, or at least through a wide number of alternative providers, who can do things more informally. There is an alternative argument here that the state is the expression of all our joint collective support for each other, and it is appropriate for caring services to be offered though formally organised state provision. For one thing, the state can ensure equivalent standards and policies so that everyone is treated equally. However, many people argue that there is a balance here. The reality seems to be that a single state service tends to become less flexible, so that a mixture of state and alternative provision seems best, with the government assuring the standards and level of provision through regulation. Community care policy in Britain has seen the implementation of many of these policies and presents a case study of many of these debates. As medical and other treatment improved in the 20th century, the 19th century institutions became less appropriate, and throughout the century, there was a professional movement away from keeping people in institutions. Moreover, in the 1950s, opinion moved towards encouraging people to seek treatment and help when they needed it, and the legal requirements to enter an institution was obstructing people’s preparedness to get help in the early stages. So, the law was changed to make it possible for people with mental illness to receive treatment in hospitals without being forced to enter a mental hospital, and deal differently with people who needed to be compelled to receive treatment because they needed protection or because of other people’s safety. Now, their case was reviewed independently by doctors and social workers and they could appeal against the decision to compel them to have treatment. All this encouraged a reduction in the number of people needing treatment in mental hospitals, which reduced in size. Eventually, this became official policy, and was also applied to other people needing long-term care, such as elderly people, children and young offenders. The financial problem arose, however, that the cost of institutions was so great that money could not be spared for community services. At first, additional

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money was focused on community services, rather than being given to institutions. This led to two problems. First, institutions reduced their standards and there were a number of scandals about poor-quality care. People did not want to work in them. Second, as the economy slowed down in the 1970s, there was no growth in the economy, so improvements in community services could not be made. There were special devices for transferring money from institutional to community services, but these did not have much effect. The effect of all these problems was that people who needed help were not getting services at all, and the reduction in importance of institutions lost momentum. Through various unexpected consequences of changes in government policy, a large number of private, that is for -profit, non-government institutions grew up, especially for elderly people, and supporting people in these institutions began to cost the government a lot of money. So, there was a review of policy and this led to a new piece of legislation, the National Health Service and Community Care Act, 1990. This has been brought into force during the 1990s, although the development of policy is still continuing. The new community care policy is concerned with continuing deinstitutionalisation for people needing long-term care. This means organising services in the community for people who might need to go into hospitals or homes, so that they do not need to be institutionalised. It also means helping people already in institutions to return to the community, and reducing the size and complexity of institutions so that living in them is more like ordinary life. The service is provided by a ‘mixed economy of care’. Thus, although the government pays for much of the service, people can contribute from their own income or savings, if they have any, and their families also contribute. Services are not provided mainly by government agencies, but by voluntary associations and by private companies. In many areas, the local social services also have arrangements for paying neighbours or people in the community to increase the support their would provide. Part of the reason for the ‘mixed economy’ is to encourage as much variety as possible, and to ensure that provision is a close to the preferences and special needs of the community and family as possible. However, it also aims to reduce the government’s costs. Since the legislation was introduced by the former Conservative government, it also reflects their political ideology. That is, they believe in the reduction of government involvement in providing services to the public, and they prefer competition in a market, which drives down costs and provides choice among alternatives through encouraging competition. Because most of the expenditure comes form government sources, however, the market is rather artificial, and is usually called a ‘quasi-market’. How are services provided to people within the market? This is done through a social work practice innovation called in Britain care management but this is known internationally by the American term case management; for simplicity I shall use the term case management. The idea of case management is that each person who has serious care needs is allotted a case manager, usually a social worker, although other professionals, especially nurses, also do this job. The case manager works with the client, or service user, to make an assessment of the situation. They then create a care plan, which will

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consist of a package of services drawn fro the services available in the area. The case manager is also encouraged to be creative. For example, they might negotiate with neighbours or local businesses to provide services such as help in the home or meals for someone who cannot manage their home or do cooking. The case manager then organises the services and monitors whether the package fits together and is suitable for meeting the client’s needs. It is adjusted as needs change. The local government social services department is responsible for providing or organising for others to provide a suitable range of services in their area. The services used in each individual package are drawn from a local plan which sets out what services are available. The crucial aspects of this service are: · the participation of the client or service user in assessing and planning the situation, · the explicit provision for including informal care by neighbours and friends in a package, and · the idea of organising a coordinated package of care which is relevant for the individual, rather than providing a routine service. This reduces the tendency to give people more than they need, and so reduces waste of money.

2

Problems with recent community care developments in Britain

Having presented the history of the development of community care policy and some indication of the present arrangements, I now turn to say something about the problems that have arisen in implementing the recent community care policy changes. First, there is an inherent conflict between trying to respond to clients’ and service users’ choice and participation, and providing a creative package of services, while the government seeks to contain expenditure. While a proportion of cases have achieved an improved quality of service and flexible provision, these are very much the exception, and such cases often have special needs, and therefore more creative responses. The average elderly person will continue to get a very routine service, and probably has experienced reductions in amount of service or quality and increases in cost. Equally, case management has not been creatively implemented in many cases because the range of services available negate its value. The strongest criticism has been about the increased level of charging for services, lack of services available and the need for workers to ration services rather than creatively developing them. Second, and more important, there is evidence of considerable difficulty over the assumption that informal and non-official care can be included in the mixed economy of care (Bulmer, 1987). Most informal and family care relies on women, although husbands do provide extensive care for their wives, where they become elderly or disabled. Generally, carers are women. Demographic change has led to several criticisms of the assumption that women will be able to provide care in their families and community. For one thing, over this century there has been a reduction in the size of families, and whereas in the early part of the century anyone would have had numerous female relatives, now there are fewer. Also, many more women go out to work, so they are less available for extensive caring tasks, or taking up full-time caring will damage the family’s income.

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Therefore the political and social assumption that family and community care is the preferred way of responding to social needs may have become outdated. Third, it is not clear that the mixed economy of care in a quasi-market will be effective way of organising services. While it is flexible and offers choice, it fragments what were coordinated and planned services and makes organising a coherent set of services in an area more difficult. There are problems at both the planning level and at the level of organising services for particular service users. In planning, people form different professions and services must be brought together and negotiate an agreement about the most appropriate range of services. They also come from different sectors. The market places them to some extent in competition with one another, so their interests may be in conflict. Also, different professional positions and values may be represented by different services and these can be had to align. At the level of providing services, each different profession and provider must carry out assessments for their own purposes, so a coordinated plan based on the case manager’s assessment made with the participation of the service user may be displaced b a variety of conflicting plans. Of course, although these criticisms are made of the present system, many of them were also present in the previous, service-based organisation, so it is important not to exaggerate the difficulties of the present system.

3

Professional implications of community care policies

These three problem areas in community care policy have led to developments in professional practice, which seem to be necessary to implement a community care policy effectively. These include developments of case management, in multiprofessional work and in networking. Each of these connects with the other. Case management There are three forms of case management. The one presumed by the British government system is ‘social care entrepreneurship’. In this, case managers, who are usually social workers, act as entrepreneurs in the system. It is their job to create the package of care, exploring the system and being creative in fitting the different elements of care together. This approach has its origins in American case management, and developed to deal with the relatively fragmented mixed economy of the American care system. It is used particularly where there are very disadvantaged or disabled people in the community who need access to quite extensive services. A different approach, ‘service brokerage’, developed from Canadian models. In this, the case manager acts as a consultant to the client or service user, who themselves carries out the investigation, makes their own assessment and organises the package of services. This approach is particularly useful for people already in the community who may need services but are intellectually capable; for example physically disabled people. It has the advantage of placing responsibility with the service user themselves and gives them greater control over the process. At the point where the package of services is being delivered, the service user is much more aware of how the services fit together and to

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respond immediately to problems. The worker’s role is to find things out for the service user, help them organise their thinking and in particular to act as the service user’s professional advocate where administrative arrangements need to be made or where the service use’s needs have to be represented to a service, or official reports written. A third approach to case management is a multiprofessional approach, in which a team of workers from different professions and agencies work together: this might include social workers, psychologists, housing managers, nurses, doctors, physiotherapists and others. This approach is typical where a patient in a hospital or resident in a care home is being discharged into the community. Typically, a meeting involving the client and all the relevant workers would consider the needs to be met and the approach to be taken. Assessments of needs from different professional points of view would be brought together. A plan would be created, and a keyworker is often appointed who cats as case manager, but also has the responsibility of keeping in touch with the other professions and their roles. Inevitably, this different approaches have influenced each other, so dealing with some of the problems raised with the conventional ‘social care entrepreneurship’ model. Multiprofessional meetings might be included in the process if there are a lot of professionals involved. To maintain the service user’s independence and involvement, they may very often take up part of the plan to implement themselves, with help from the case manager, or would act as their own case manager, with help from a keyworker. Multiprofessional work Attempts at developing multiprofessional work have been particularly important in health-related work for many years. The traditional model was often of a doctor taking responsibility for a patient, working with a team of people who might include social workers, to whom the doctor would prescribe responsibilities within the doctor’s plan, rather as the doctor prescribed medicines. As such systems developed, other workers took part in discussion with doctors and influenced their decision-making. As work has become more focused on the community, the doctor’s role has become one among many, rather than always taking on a managing or controlling role. The main problems involved in discharging a mentally ill man who has a history of violence from hospital require effective nursing, liaison with the community and various psychological assessments and treatments, as well as traditionally medical ones. Thus, expertise is contributed to a multiprofessional team from different points of view, and responsibility taken by different workers for different aspects of the work. This requires careful coordination among the different workers, and usually the development of a team ethos, objectives and methods of working. The multiprofessional approach with particular service users can help to overcome the limitations on service which come from its being provided from a number of different agencies by different personnel.

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Networking An important development has been a concern for networking. The professions and agencies involved can be seen as a network, in which a number of points in the social service system are linked by the relationships between various personnel. The families and communities can also be seen as networks of people, connected by relationships. An important objective of practice is to increase the number of links among a network, and to increase the strength of those links. The number of links can be increased by putting more people in touch with one another. Generally, the more links there are, the more redundancy there is in the system. That is, is one connection fails and someone does not receive a piece of information, they are more likely to find it from someone else if there are many links in the system. The strength of links can be increased by improving relationships and understanding between people in the network, by increasing the frequency of their contacts and by careful planning of contacts. All this means that work contacts can be more relevant when they take place instead of wasting time. Some people are better at making and maintaining links than others, and this is a useful professional skill which can be developed. In many multiprofessional teams training about new aspects of work or developments in practice is taken together to strengthen links and shared aims and methods.

Some conclusions In giving this account of the development and some of the problems with community care policy in Britain, I have tried to give an impression, first, of the debates which go on about the development of services within, and the complex mixture of political, administrative and professional developments which go together top create a developing field of practice. Second, I have tried to outline the basic elements of case management as a practice technique and mode of organisation within services, since this is a widely discussed model of practice in any parts of the world at present. Third, I have tried to suggest the importance of multiprofessional work and networking. Although the first has had a long history in health and social care, doing t well is becoming an increasingly important aspect of improving the quality of services. Networking, that is, increasing the number and quality of links among families and communities, is a relatively new concept, but is bringing dividends in conceiving of the role of social work specifically as a way of developing family and community support. The traditional forms of social work were much more concerned with personal problem-solving by the client, involving the worker in a professional therapeutic relationship, or with the delivery of social services to people in need. Networking is proving to be a useful sociological concept contributing to practice, which connects services and personal helping to the need to promote family and community support.

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References Brown, H. and Smith, H. (Eds) Normalisation: A Reader of the Nineties, (London, Routledge) Brown, P. (1985) The Transfer of Care: Psychoatric Deinistitutionalisation and its Aftermath, (London, Routledge). Bulmer, M. (1987) The Social Basis of Community Care, (London, Allen and Unwin). Payne, M (1995) Social Work and Community Care, (London, Macmillan). Ramon, S. and Giannichedda, M. G. (eds)(1988) Psychiatry in Transition: The British and Italian Experiences, (London, Pluto).