- The Tizard Centre
- Executive summary
- Appendix 1 Search terms
- Appendix 2 List of papers included
- Appendix 3 Domains addressed by each paper
Focus of the review
There is a large body of research carried out in many countries comparing different residential care models (see reviews by Kozma et al., in press, Emerson and Hatton, 1994, Young et al., 1998, Kim et al., 2001, Walsh et al., 2007, Mansell et al., 2007b). However, most of this research has focused on the transition from large institutions to smaller settings, especially to dispersed housing, in the community. In general, this research shows that dispersed housing in the community provides a better quality of life and is at least as cost-effective as congregate care. In some countries, clustered settings have been developed as an alternative to dispersed housing. This review examines the much smaller body of evidence comparing these services with dispersed housing. Its focus is the question whether, in developing services for people with disabilities, it is better to support people in ordinary housing dispersed among the general population or to support people in housing clustered together to form a separate enclave or community.
Proponents of dispersed housing argue that disabled people have a right to live in the mainstream of society, with the support they need to do this; and that it is better for people to be well-supported in this way (Campaign for the Mentally Handicapped, 1972, Wolfensberger, 1972, Nirje, 1976). They fear that the creation of separate communities of disabled people, however well-intentioned at the start, will inevitably lead to discrimination and disadvantage. They point to the experience of institutional care in the nineteenth and twentieth centuries as an example of this (Ryan and Thomas, 1987, Wolfensberger, 1975).
The proponents of grouping disabled people in separate communities argue that it is possible to achieve at least the same benefits as in dispersed housing. They also propose three special advantages of grouping people together: that disabled people living in clustered settings will have a richer social life, that they will be safer and that overall costs will be lower because of economies of scale (Segal, 1990, Cox and Pearson, 1995). They point to exploitation and abuse in dispersed housing as evidence that quality of life will not necessarily be better among the general population.
In both cases, the arguments are made on the basis of idealised service models. So, when there is evidence of poor outcomes in dispersed housing or clustered housing, the proponents of each model argue that problems are not central to the model they favour but reflect weaknesses of service design, management or operation. This means that it is particularly important to study exemplary services - those which are thought to be achieving more of their potential - in choosing between service models.
The service models and their origins
Dispersed housing may be defined as apartments and houses of the same types and sizes as the majority of the population live in, scattered throughout residential neighbourhoods among the rest of the population. Two main kinds of dispersed housing have been developed in those countries which have begun the replacement of institutional care of disabled people. The first is the small group home (Mansell et al., 1987, Felce and Toogood, 1988, Lowe and de Paiva, 1991, Thomas et al., 1978). This is typically a property owned by a service-providing organisation (governmental or non-governmental) in which a small number of disabled people live with whatever support they require from paid staff. This is the dominant form of provision of dispersed housing in most countries at the present time (Mansell, 2006). The second type of dispersed housing is usually called 'supported living' (Allard, 1996, Horner et al., 1996, Kinsella, 1993) and involves the disabled person renting or owning their own home (which they may share with people they choose) and receiving the staff support they need as a domiciliary service from an agency that they choose. The key difference is that in the second case the disabled person has the same housing rights as other citizens.
Dispersed housing models were first developed in the nineteen-sixties and nineteen-seventies. Typically, early examples supported people with less severe disabilities but by the nineteen-seventies examples were beginning to be developed of dispersed housing for people with more severe disabilities. From the early nineteen-eighties there was rapid development of dispersed housing to replace institutions, particularly for people with intellectual disabilities, in Scandinavia, the USA, Britain, Ireland, Australia and New Zealand (Mansell, 2006).
For the purposes of this review, clustered housing is defined as a number of living units forming a separate community from the surrounding population. Several different types of clustered housing have developed.
- Village communities were first set up after the Second World War. They are distinguished by having support workers, who are often unsalaried, and their families, living communally with disabled people to facilitate close personal relationships, and provide them a social and cultural framework for work, community service, worship and education. For example, there are 34 Camphill communities in the UK and Ireland supporting people with intellectual disabilities. Because such communities depend on life-sharing by non-disabled people and such people are in short supply, they are a relatively small part of the total amount of service provision.
- Residential campuses were often developed as part of the programme of closure of institutions and were modelled partly on village communities such as Camphill and Ravenswood and partly on residential services in the Netherlands and Belgium. They differ from village communities in two main ways: they usually serve much more disabled people, and they employ staff to provide support to residents. Like village communities they are often self-contained, with day provision and other services on site.
- Cluster housing typically consists of a relatively small number of houses on the same site, for example forming a cul-de-sac in housing for the rest of the population.
Although the proponents of these kinds of settings distinguish them from the large residential institutions for disabled people which still exist in many countries, it is important to recognise that large institutions were often built and organised on the campus model. Much of the research on large institutions is in fact research on residential campuses, albeit with larger living units, and is relevant to the issue of whether grouping disabled people in separate communities is desirable.
Housing models and different disability groups
There are marked differences between people with different disabilities in how their needs for accommodation and support are met. In all the countries which are replacing institutional care of disabled people with modern alternatives, the largest number of disabled people live at home with support from family and friends.
People with physical disabilities or with mental health problems will often live in their own homes with support from visiting staff. Clustered housing for people with physical disabilities does exist in the form of special villages or campuses (for example the David Lewis Centre, Manchester for people with epilepsy, Barrowmore Village Settlement, Chester, for people with disabilities and the War Memorial Village, Lancaster). Some of these settings are changing as their residents age to become care homes. For younger people with physical disabilities, new alternatives include direct payments and individual budgets, first developed by people with physical disabilities, to support people to live in the way that they choose.
It is people with intellectual disabilities, and to a lesser extent people with long-term serious mental health problems, who are the largest groups in special accommodation. Clustered housing for people with intellectual disabilities is more widespread and includes village communities, residential campuses and clusters of houses. The search undertaken for this study found no studies of clustered housing for people with mental health problems.
The difference between disability groups is reflected in the research literature, which is entirely focused on people with intellectual disabilities.
The situation in Ireland is summarised in Volume 3 of the European report on Deinstitutionalisation and Community Living - Outcomes and Costs (DECLOC) (Beadle-Brown and Kozma, 2007). Analysis of the Health Research Board reports for 2006 from the intellectual disability database and also from the physical disability database, highlighted a range of accommodation options available for people with disabilities. People with physical disabilities for whom data was available (n=505) were in the majority of cases supported in their own home or a smaller residential units (less than 10 places) in the community. However, there were still 205 places reported for people with physical and sensory disabilities in larger settings such as hospitals, nursing homes and specialist units, and an additional 43 people/places in residential complexes or campuses.
Mulvaney, Barron and McConkey (2007) pointed out that 60% of people with intellectual disabilities using residential services in Ireland still live in 'special living' settings which are generally larger and congregate in nature and include the 7% in hospital accommodation. From the analysis of the data presented in Beadle-Brown and Kozma (2007) related to people with intellectual disability (data was available for 8073 people), almost 400 people were in psychiatric hospitals, a further 181 in nursing home settings and 3334 people were in residential centres. The average size of residential centres was 41 but could be as large as 220 places (Mulvaney et al., 2007). These centres and the group homes in the community are of three types: five-day a week placements, where residents return to their family every weekend; seven-day a week placements where people return to their family for holiday periods and full-time settings. In addition, almost 600 people were in what was called 'intensive placements', many of which were in a larger complexes. More recent data for 2008, from a census carried out on behalf of the Health Service Executive Working Group on Congregate Settings, shows that there were just over 4000 people with intellectual, physical or sensory disabilities living in congregate settings of more than ten persons. These data exclude people in intentional village communities and mental health residential centres.
Although detailed information about the situation for people with mental health problems, was not available, the DECLOC report highlights that almost 3,500 people were in psychiatric hospitals (46% of whom were long-stay patients). Those not in hospitals generally lived in group homes with varying levels of support - 50% of community based places were in homes with 24-hour support.
Assessing quality and costs
How should different service models be compared? Different services and different researchers in different countries have different ways of characterising the quality of supported accommodation for disabled people. In recent years there has been a sustained attempt by researchers in intellectual disability to develop a consensus on the concept of quality of life (Schalock et al., 2002). This provides an overarching structure into which different elements can be fitted consistently. The structure has eight domains (Box 1) and has been used in this report to organise the analysis of research.
Community integration/participation, social inclusion, residential environment, role (lifestyle and adaptive/problem behaviour), supports (services and satisfaction with them), acceptance, status
Health (safety, healthy environment, physical condition, etc), leisure, physical well-being, activities of daily living, recreation, nutrition, mobility, health care
Interactions (at work, with staff etc), family, interpersonal relations, friendships (affiliation and loneliness), supports (eg social networks), intimacy, affection
Employment, financial, ownership, security, socio-economic status, shelter, transport
Contentment (with work, residence, supports, satisfaction with community, satisfaction with services etc), emotional well-being (general, personal, psychological well-being), self-concept, freedom from stress, spirituality, happiness
Autonomy, choices, personal control, decisions, self-direction, self-determination, resident influence, self-advocacy
Education and habilitation, skills, personal competence, fulfilment, purposeful activity, advancement/development
Privacy/respect, freedom, basic human rights, citizenship (voting etc), access, civic responsibilities, activities related to local and national governments (eg participation and consultation), due process of law
The quality of life framework provides a comprehensive framework for considering the outcomes experienced by people using services. In addition, most research also provides information about service characteristics such as structure (how many people live there, how many staff support them, in what sort of environment) and process (how staff plan and organise the support they give, how decisions are made, how staff interact with the people they support).
The evaluation of costs of services has just as many complexities (see for example Mansell et al., 2007b). These can be summarised, for the purposes of this review, as three criteria (Box 2). First, measurement of costs needs to be comprehensive: it needs to include all the costs involved in supporting the person. For example, if people in a campus setting use a day centre on site but people in dispersed housing use day centres or supported or sheltered employment in the community then the costs of day support are likely to be included in the cost of the campus but not in the cost of the dispersed housing. Second, comparison of costs needs to be made on a 'like-for-like' basis: the same things need to be compared. For example, if people in campus settings are more or less disabled than people in dispersed housing, the amount of staff support they need will differ because of the differences in their disability as well as because of any difference in the service model. Third, cost comparison needs to take account of long-term effects. For example, if people move out of one kind of service to another they may need higher levels of support at the beginning than later on.
Inclusion of all costs
Ensuring comparison on the basis of the same elements costed in the same way
Taking account of differences in costs at different stages of the process being studied
Since resources are limited, comparing services on the basis either of quality or of costs alone does not help decision-makers choose the best service model: this requires costs and benefits to be weighed against each other in an assessment of cost-effectiveness.
Purpose of the review
The purpose of this review is
- To find and summarise all the available research evidence on the quality and costs of dispersed community-based housing when compared with clustered housing
- To assess the strength of the research and identify gaps in the evidence
- To interpret the research to outline the benefits and drawbacks of each model