Scottish Government

HOW DOES THE COMMUNITY CARE? PUBLIC ATTITUDES TO COMMUNITY CARE IN SCOTLAND

CHAPTER SIX: CONCLUSIONS AND POLICY IMPLICATIONS

INTRODUCTION

This chapter brings together and discusses the main findings of the report. It also considers the implications of these findings for community care and related policies in Scotland.

SOCIAL INCLUSION

Respondents were asked to consider how comfortable they would feel living next door to a user of community care services. They were presented with stories of four people, each of whom had different needs. This approach made it possible to be very specific about needs without 'labelling' service users or employing terms that might not be generally understood. The different vignettes also made it possible to examine whether some people were seen as more of less acceptable as neighbours than others.

The key findings were:

• there were significant differences in how comfortable respondents said they would feel living next to each of the four individuals
• three quarters (73%) said they would feel comfortable living next to a frail, older person who sometimes falls
• six out of ten said they would feel comfortable living next to a person with a learning disability who needed support to attend a club
• more than half said that they would feel uncomfortable living next door to a person with a mental illness (53%) or with dementia (57%)
• female respondents were significantly less comfortable than male respondents when the person with mental illness was described as male
• professionals/managers and people with degrees were more likely to report that they would feel comfortable living next to a frail older person
• older people (aged 55 and over) were significantly less comfortable with the idea of living next to a person with a learning disability or to a frail, older person than were younger people (aged under 35).

These findings suggest that there is still some way to go before all users of community care services are accepted as part of their community. The frail, older person and the person with a learning disability were seen by most respondents as people they would feel comfortable living next door to. However the idea of living next door to the person with dementia or the person with mental illness was uncomfortable to about half the respondents. These distinctions are of some concern because policies for social justice in Scotland explicitly aim to create a society in which "everyone matters" (Scottish Executive, 2001).

It would be premature to conclude that these attitudes were wholly the product of intolerance. Concerns about safety may have played a part. The person who 'often forgets things' and who was seen as the least acceptable neighbour had been described as posing a possible risk to others by 'leaving the gas on'. Risk was also suggested (see above) in the story about the frail, older person who proved to be the most acceptable neighbour. However in this case, although the risk was also described as serious - not being found after a fall for 12 hours - the risk was to the person themselves, rather than to others.

Other factors, such as assumptions about independence, may also have come into play. Although the stories were meant to describe people who needed similar levels of support, albeit of different kinds and for different reasons, it is possible that people may have read a greater 'dependency' into the story about the person with dementia, especially as the description of the frail older person emphasised their wish to remain in their own home and preserve their independence. Very great changes have taken place in what is considered good practice in care and support and it would not be surprising if, for example, many people were unaware that people with dementia could be cared for in their own homes.

A range of concerns may therefore explain the differing reactions to the individuals and circumstances described. However reactions to the person with a mental illness may provide the clearest evidence of stigma. The story did not itself suggest that the person posed a risk and yet nearly half of the respondents said that they would not feel comfortable having them as a neighbour. They may have assumed the presence of risk from the person's history of hospitalisation and recurrent illness and the need for regular medication. The fact that female respondents were significantly more concerned about having a male neighbour with a severe and enduring mental illness also suggests that a stereotypical association of mental illness and the risk of violence may have come into play.

These findings suggest that there is a case for public education to improve the chances of social inclusion for users of community care services. The positive relationship of educational level with more accepting attitudes suggests that there is scope for education to affect these attitudes. The fact that younger people were more accepting than older people of the frail, older person and the person with a learning disability may indicate that attitudes are changing, although we cannot yet know what these young people will think as they get older. Public education campaigns that address the stigma surrounding mental illness have a clear role in attempting to challenge stereotypes. The 'See me' campaign, launched in October 2002 by the Scottish Executive, is using the media and other means to show that people with mental health problems are individuals who can make a contribution to society. The campaign is part of the National Programme for Improving the Mental Health and Well-Being of the Scottish Population.

In addition, people seem to have been concerned about issues such as risk, rather than merely rejecting all people who were 'other' as members of their immediate community. The results of this survey indicate therefore that social inclusion strategies would benefit from the general public being made more aware of how services in the community can manage risk (for the individual and for others) and provide adequate support at home to people with high levels of need. 'Bad news' stories about community care often focus on the breakdown of support and monitoring. On the basis of this survey, the more news and experience that the public receive of successful community care, the more likely they are to feel confident in accepting users of community care services as neighbours in their own communities.

ACCEPTANCE OF COMMUNITY CARE POLICY

The survey also set out to test knowledge of, and attitudes to, the fundamental principle of community care that people should have the choice to live in the community, in their own homes or in a homely setting, with appropriate support for their needs (Scottish Office, 1998). We wanted to know whether respondents would see care in a community setting as appropriate for some or all of the individuals described or whether they would opt for care homes or hospitals as the preferred model. The questions asked was where it would be best for the person to live, assuming that all these options were available to them. The options given represented a range of settings: in own house with some help, with another family member, in special housing with support in the community, in a residential or nursing home or in hospital.

For the purposes of analysis the first three options were counted as community-based and care homes and hospital as not community-based. It is recognised that this is an over-simplification and that in reality some special housing in the community might be institutional in style and that care homes may be homely in the environment they provide. The emphasis here was on location and the question tried to make it clear that in each location people would receive some support. The main findings were:

• there was a clear preference for community-based options, ranging from 88% for a person with learning disabilities to 58% for a person with dementia
• people distinguished between settings for different needs
• half the respondents chose 'special housing with support' as the best option for the person with learning disabilities
• for the older person with dementia, 40% selected a care home
• hospital was only selected as an option for the person with mental illness (7%) but was not the preferred option; 42% chose special housing for this person, while the proportions for own home (24%) and care home (19%) were similar.
• young people were significantly more likely than older people to select care in their own home as the preferred option for people with learning disabilities
• older people were slightly less in favour of care in their own home for the frail older person than was the population as a whole.

Overall these findings indicate that the headline message of community care, that people with a range of needs can be supported in the community, was accepted by respondents. Over half selected a community-based option for all the individuals described. There were also indications that they wanted flexible responses to needs. This is also very congruent with the goal of community care to provide needs-led rather than service-led options. Respondents were discriminating in their choice of the 'best' option for the different individuals and made different choices according to the person's sets of needs. According to feedback from interviews during the piloting stage, some people struggled to come up with a 'best option' without knowing more about the person's needs and circumstances. This is reflected in the response of 'whatever they want', offered spontaneously as the most common reason for not selecting one of the given options.

It is important to consider the relationship between these findings and those about the acceptability of individuals as neighbours. The choice of a care home as the preferred option (selected by 40% of respondents) for the older person with dementia again shows that care at home is not the generally accepted model of support for these individuals. Moreover the proportion of people selecting a community-based option for the person with dementia (58%) was higher than the proportion of those who said they would feel comfortable living next door to such a person (42%). It is possible therefore that the more closely they were likely to be affected by such a choice the less favourable they would be. Alternatively it may be that respondents felt more reassured when offered a range of support options in the community. In contrast respondents were much more accepting of the idea that a physically frail older person could be supported in their own home. As well as being most comfortable with the idea of this person as a neighbour, half of the respondents thought the person could best be supported in their own home, whereas only a quarter selected the option of a care home.

However it is not the case that respondents were only comfortable with physical needs being met in the community. The strongest support for community-based options (88%) was for the person with a learning disability, with 'special housing with support' being the preferred option. Care in the community was chosen as the best option for the person with a learning disability by 73% of respondents. As for the person with dementia, this is higher than the proportion of those who said they would feel comfortable with having that person as a neighbour (53%). Half (51%) selected 'special housing with support' as the best option for this person, again suggesting that people may have been making a judgement about the level or regularity of support and monitoring that the person required and that they may also have associated higher levels of support with the 'special housing' rather than the 'own home' option.

Differences in the choices made for some individuals by respondents of different ages cannot be interpreted with any certainty. They could reflect increasing awareness of the burden of care with age or greater familiarity with more community-based models of support or valuing of independence among younger respondents.

Overall it can be concluded that the survey found support for the underlying premise of community care that people should have the option of support in the community. Moreover the distinctions made by respondents suggested that they believed that the type of support should be determined by that person's needs. On the other hand respondents did clearly see different settings as appropriate for different needs. The ideal of community care policy, that the support you receive should not determine where you have to live, was not generally accepted by respondents, although there was some indication that they felt choice should be taken into account. We have suggested that respondents may have viewed the levels of support appropriate to some needs as greater than others. They may similarly have associated the various settings with different degrees and types of support. Whether these views reflect ideas of what is desirable or experience of where support is actually available is not known.

These findings therefore reinforce those reported above that awareness of the range of support options in the community may affect public perceptions of what is possible. A case can be made from this survey for continuing to educate people about the range of support options available and the degree of independence which can be achieved for people with various types of need. There is likely to be a link between the services on offer and the messages that the public receive about people's capacities and potential. Changes in attitudes therefore might be expected to follow if domiciliary and community-based support options increase to become the norm.

Despite financial pressures, this may become a reality for people with learning disabilities, for example. All long-stay hospitals for people with learning disabilities in Scotland are set to close by 2005. A further step towards greater social inclusion is likely to be enabled by Supporting People, increasing the income available to tenants and the possibilities to provide community support. Making service provision more inclusive, open to choice and control by those who use services and flexible for needs, may in time make an indirect impact on the lives of people who use services and families by expanding the public imagination about what is both safe and possible (Oldham, 2000).

CITIZENSHIP

We wanted this survey to include a measure of the extent to which people who use services are regarded as active citizens. We considered using voting as this indicator but rejected it on the grounds that the right to vote is likely to be so widely accepted for almost everyone that it would not distinguish any variations in attitudes. We therefore used the question of the right to sit on a jury as a measure of whether respondents considered that individuals with support needs could, with support, make an active contribution as citizens. This question was only asked about the individuals with a mental illness or learning disability so this is the only comparison we have available. The main findings were:

• 73% of respondents thought the person with learning disability should not serve on a jury
• 82% thought that the person with a mental illness should not serve on a jury
• younger people and people with degrees were significantly more in favour of jury service for both individuals.

This low expectation among respondents that either of these individuals could serve on a jury, even with support is contrary to policy intentions that every citizen's capacity to contribute to society as well as to receive support from it should be recognised. It is a goal of all social justice policies in Scotland to create 'a society in which every person both contributes to, and benefits from, the community in which they live' (Scottish Executive, 2001). For example the policy for people with learning disabilities, 'The same as you?' (Scottish Executive, 2000) explicitly states that people should be full citizens, able to contribute to the communities in which they live. These intentions depend on more than tolerance of users of services as part of the community. They suggest the need for long-term campaigns to change public attitudes to reflect more positive images of people who use services. It has everywhere proved easier to enable people who use community care services to live in the community than to become a part of that community (Northway, 1997). People who use services and family carers are often excluded from social participation (Barr, Stenhouse and Henderson, 2001).

The difference between the results for the person with a learning disability and the person with a mental illness is significant. This is especially notable given that it was the person with a mental illness who was seen as less suitable for jury service, whereas capacity issues were arguably stressed more in the description of the person with a learning disability.

We cannot determine whether respondents were primarily commenting on rights or on capacity. According to interviewer feedback, in some instances respondents felt that they were being protective, rather than prejudiced, not wishing to subject people to pressure. The issue of jury service may be rather limiting therefore as a measure of how far people see individuals with support needs as citizens with rights and responsibilities in society. It is possible that some see jury service as a burden. Regrettably it was not possible to ask about attitudes to, for example, people with physical disabilities or sensory impairments serving on a jury, which might have been illuminating. We can only speculate how results might have differed if we had asked about an aspect of citizenship duty that might be perceived as more rewarding, for example volunteering.

Nonetheless the example of jury service does raise very starkly the question of whether people think that users of community care services have responsibilities and rights. This survey obtained the clear result that the majority of respondents, for whatever reasons, thought that it was not appropriate for individuals with a mental illness or a learning disability to serve on a jury. It is this perception that is of importance. In reality it might not be known what a juror's needs might be and the right for support to be provided in the jury room (whether because of hearing, sight or intellectual impairment) is not yet accepted on the grounds that the person may be influenced by the supporter.

The descriptions that we provided of individuals emphasised their needs rather than their capabilities and potential. This is a reminder of the importance of the images with which the public are presented of people who use community care services. It would be interesting to change the stories, emphasising the valued roles that the individuals concerned may have as family members, friends or volunteers and to see whether the reported attitudes to them as citizens change. The findings indicate the need for awareness-raising to enable people to understand what a disability or illness does and does not mean about someone's competencies and what people can do and be supported to do, despite having a disability.

However public education alone is unlikely to change attitudes to disabled people. The think tank, Demos, has argued for the need to include disability in wider discussions about social and economic inclusion (Christie and Mensah-Coker, 1999). There are many opportunities in Scotland at present to promote the inclusion of people who use services within their community and these strategies of social and economic inclusion are also important for changing attitudes. For example, the Beattie report, Implementing Inclusiveness, Realising Potential (Scottish Executive, 1999c ), puts forward an action plan for the social inclusion of young people that involves enterprise councils, further education, community education, local authorities and the voluntary sector. It therefore has the potential to raise awareness in many sectors of society about the capacities of young people with support needs.

THE PROVISION OF CARE AND ACCESS TO SERVICES

The survey asked who was the best person to provide care and where people would be most likely to go to arrange care for someone in their own family. The purpose of these questions was to provide information about both preferences for, and knowledge of, community care services. The choices offered for the provision of care were: someone in the family, a friend or neighbour, a nurse, a home help/carer/care assistant or someone else. The options for arranging care were left open. This last question was not asked for the person with dementia. The main findings were:

• over half the respondents (55%) considered paid workers (home help or nurse) as the best person to care for a frail older person who needed domestic help, although 29% selected a family member
• respondents chose a family member (31%) or a volunteer (25%) where a social need was highlighted for the person with learning disability
• a nurse was identified as the best person to check medication for the person with a mental illness (39%)
• there were few age variations in preferences for who should care, although older people were significantly more likely to choose a nurse as the best person to care for an older person with dementia
• social work departments were most commonly identified as the first place people would go to if they needed to arrange care for a relative; this was true for all three types of need identified - domestic, health and social
• GPs were the second most commonly identified first port of call to arrange care, again for all these needs
• only 1% of respondents identified a charity and less than 1% a private agency as the first place they would go to arrange care.

Again respondents were selective in their choice of the best person to provide care. They selected particular competencies for particular needs, a home help to provide domestic help, a nurse to check medication and a family member or volunteer to provide social support. In retrospect it might have been wise to offer the option, 'it doesn't matter who' to see how important respondents thought it was to have such a choice. However on these results we can say that respondents did see particular workers as best able to meet different needs.

It could be argued that this is contrary to developments towards more generic workers who can meet a range of needs. At least it is a reminder that respondents still associate particular skills with particular jobs. The question evoked relatively traditional perceptions of each type of worker but it does not necessarily follow that different perceptions of these roles could not be developed, provided that people felt assured that an individual's specific needs were being met.

The question about who was best to provide care also offered people the option of selecting care by a paid worker or care by a family member or volunteer. For the most part respondents selected paid workers, so we can conclude that they saw community care services as a public rather than a private responsibility. The exception to this is the example which was given of a social need. A quarter of respondents thought that a volunteer would be the best person to take someone to a club once a week, 30% selected a family member for this and 19% a friend.

It is possible to interpret this finding in a number of ways. It could be seen as indicating that social needs have a lower priority in people's minds than direct support needs or that respondents were underestimating the level of skill required to provide social support. On the other hand, the idea that people's social needs, particularly the need to develop friendship networks, cannot be supplied entirely by services or by the state is entirely compatible with thinking about the best way to promote social inclusion. Most recent developments in services for people with learning disabilities emphasise that community supports will become increasingly important (Scottish Executive, 2000a). For most people with learning disabilities supports organised by a local area co-ordinator, based in their community, will become the mainstay of the support that can enable them to live more fulfilling and varied lives.

This survey found that people saw social work departments and GPs as the gateway to community care services. Only very small proportions considered charities or private agencies as the first places they would go to arrange care. The selection of social work departments as the first port of call may reflect knowledge of the need for assessment to obtain community care services, although we cannot know whether this is the explanation. It is surprising that 48% selected social work compared with 30% that selected the GP, given that GPs and other health services are in fact the most common access point for users of community care services. In a survey commissioned by the Scottish Executive from MORI and System 3 on attitudes to the NHS, four in five people interviewed (79%) had used one or more NHS services in the last 12 months and three quarters (74%) had visited a GP (Scottish Executive Central Research Unit, 2001). The most significant predictor of use of NHS services was the presence of physical or mental disability (93% of people with a disability had used NHS services in the last 12 months compared with 76% of people without a disability).

However while users of community care services are in contact with their GP, recent research in Scotland has indicated that they may also face barriers in accessing the service. The Scottish Consumer Council (2001) has highlighted that attention to physical access requirements, the communication needs of service users and the disability awareness of staff is needed to make primary care an effective access route to services for disadvantaged groups.

The selection of social work departments and primary care as gateways to services is relevant to developments taking place in Scotland towards jointly managed and delivered services. Under the framework of Joint Future there is an increasing emphasis on providing a 'one stop shop' to access services (Scottish Executive, 2000c). Beginning with older people, single shared assessments are being introduced, intended to avoid multiple assessments for service users. In future therefore, people may increasingly be able to have their needs assessed in primary care and other settings even when social work has a budgetary or care management role.

It is also worthy of note that respondents perceived community care as a service arranged by professionals. From 2000, the Community Care (Direct Payments) (Scotland) Amendment Regulations have extended the option of Direct Payments to people aged 65 and over. While local authorities will still be the gatekeepers to accessing resources, people will be encouraged to seek information and advice from agencies such as Direct Payments Scotland. If Direct Payments become widespread it will be interesting to know whether this leads to any shift in perceptions of who controls the access to care.

FUNDING RESPONSIBILITY

The findings of the Scottish Social Attitudes survey provide strong support for major state responsibility for paying for care, whether for older people or for other individuals with particular needs.

• Overall, two-thirds of respondents considered that the government should pay for support to the individuals in the vignettes. This ranged from 62% of respondents for the individual with dementia to 72% for the 50 year old with a mental illness.
• Those with lower incomes were more likely to support state funding responsibility: 72% of those in the lowest income group thought that the frail 90 year old should receive free care, and 75% of the same group thought the person with mental illness should receive free care.
• State responsibility was particularly likely to be cited by those who had received care in the past or thought they might need it in the future. 74% of this group thought the individual with a learning disability should receive free care compared with 62% the sample overall.

Even amongst those who selected an alternative to state responsibility, the response was that it should vary by income rather than be unequivocally the responsibility of the individual.

• Support for the responsibility for funding being dependent on income ranged from 26% of respondents in respect of the individual with mental illness to 35% of respondents in relation to the individual with dementia.

The responses to this Scottish Social Attitudes Survey are in line with those emerging from a number of earlier investigations (Parker and Clarke, 1998; Deeming, 2001; Machin and McShane, 2001), although the detail of responses is influenced by the wording of individual questions and the characteristics of the sample.

The opinion that the state should pay for personal care was endorsed by 75% of the respondents to the telephone survey for the Care Development Group of people over 50 and unpaid carers (Machin and McShane, 2001). A survey for the King's Fund (Deeming, 2001) found 61% of respondents opting for comprehensive state funding, and a further 26% for a system providing basic services to all, with the option of a 'top-up' payment for those wanting a greater amount or quality. The King's Fund study found little support for an argument that those able to pay should do so in order to target resources on the less well-off. An earlier National Survey on Care for Elderly People (Parker and Clarke, 1998), conducted in 1995, had found 72% in favour of an element of state payment for all: 24% across the board and 48% for basic services, with 'top-up' by the individual.

There was little support in this study for individuals who can pay for it being able to access support of a higher quality. In relation to older people, almost three quarters of the respondents stated that 'all elderly people who need it should get the same quality help', with little variation by age, income, political party or care experience.

As detailed, much of the debate on paying for care has focused on older people. The decision to fund free personal care for individuals aged over 65 does of course raise the key question of whether this policy will be extended to those with personal care needs aged below 65 who currently will continue, on a means tested basis, to contribute to the costs of the personal care which they require. For certain individuals, for example those with early onset dementia, the age qualification is a particular hardship in terms of equity. It is important that the cost of extending free personal care to those aged under 65 is quantified. Many potentially eligible individuals, for example those with learning disabilities or mental health problems, are already likely to be in receipt of state support. It is those with acquired physical and other disabilities, who have perhaps received industrial injury or traffic accident settlements and who thereby currently pay for their care, who may generate the greater transfer of costs.

The option of raising taxation in order to fund enhanced government expenditure, now implemented for the UK in the 2002 Spring Budget in respect of funding the health service, appears to be endorsed by the willingness expressed by survey respondents to incur additional taxation in order to fund higher levels of expenditure on services for older people, on pensions, and on health itself.

• Ninety-two percent of respondents would like more spent on health, 81% on supporting older people at home, 77% on older people in care, and 76% on pensions.
• The proportion of those seeking to spend 'much more' increased with age, with lower income, and with experience of service receipt within the last ten years.

When asked to prioritise across different options for additional expenditure, respondents selected home helps, special housing provision and district nurses as the key priorities. This can be interpreted as an endorsement for support within the community, but with a desire to explore potential housing alternatives.

BALANCE OF CARE

There is a strong endorsement from this survey for enabling a shift in the balance of care through supporting the preference of individuals to remain in their own home, even when this entails a greater cost to the government. While such a shift has, in large part, been achieved for individuals with learning or physical disabilities, and increasingly for those with long-term mental health problems, the greatest challenge is to establish sufficient domiciliary support to sustain at home all those older people for whom this would be their preferred option.

• Three quarters of respondents thought an older person requiring regular help and wishing to stay in their own home even though it was the more costly option 'should be cared for in their own house because that is what they want'.
• This response varied little by income, but was stronger amongst those over 35 and those who were familiar with care provision.

The last two years have seen a succession of funding and practice initiatives - rapid response teams, early supported discharge, intensive home care, maintenance and shopping services. The Care Development Group was determined to ensure that a substantial proportion of the additional financial investment was earmarked for home-based service development which would enable this shift of balance. This remains, perhaps, the central challenge for community care policy and practice. This study has demonstrated the substantial support for the aspirations implicit in recent policies; the urgent task is to ensure that these policies can now deliver on the agenda for which there is widespread support.