Cost-effectiveness of community living for people with intellectual disabilities: an international perspective

Jim Mansell and Julie Beadle-Brown

Tizard Centre, University of Kent

Paper given at the National Disability Authority Annual Conference, Dublin 6 October 2009

Introduction

The cost-effectiveness of community living for people with intellectual disabilities remains a topic of considerable interest to policy-makers, commissioners and providers of services, and families concerned for their disabled relatives. For people with intellectual disabilities themselves, whether they know it or not, decisions about the availability and adequacy of community living will strongly influence their life chances.

The extent of community living for people with intellectual disabilities varies in different countries. Provision is well advanced in Scandinavia, the United States of America, Canada, the United Kingdom, and Australasia. In these countries, the policy debate about whether to provide institutions or community services is largely resolved. The questions that remain are those of implementation and particularly of whether the kinds of supported accommodation that have been provided replicate institutional features and should themselves be reformed.

For many other countries, the debate between institutional and community services has never been particularly important because most people with intellectual disabilities live with their families and services to support them are relatively undeveloped. In these countries, it should be possible to develop community-based services directly, without going through a phase of institutional care.

In a third group of countries, the dominant form of service provision remains institutional care and the question of whether and how to replace this remains a matter of debate. For example, many central and eastern European countries provide institutions of very poor quality and currently have proposals to renovate, upgrade and extend them using international funds instead of replacing them with services to support people in the community.

In this paper I want to summarise the present state of our knowledge about the cost-effectiveness of community living compared with congregate care settings for people with intellectual disabilities. In doing so, I am going to draw heavily on three recent projects:

(i) First, the position statement on deinstitutionalisation and community living drawn up by the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities, and approved at the Council meeting in Singapore earlier this year.

(ii) The second project is the study commissioned by the European Union on the outcomes and costs of deinstitutionalisation and community living, carried out with my colleague Julie Beadle-Brown and with colleagues at the London School of Economics.

(iii) The third contribution to this presentation comes from more recent work commissioned by the National Disability Authority in which we reviewed the evidence comparing dispersed housing with clustered settings.

Each of these pieces of work itself brings together and synthesises a great deal of research. This is a very intensively-studied topic, and the results are relatively clear.

Effectiveness of community living

The evaluation of community-based models of care for people with intellectual disabilities, compared with the institutions they replace, generally shows a relatively clear picture. Over and over again, studies have shown that community-based services are superior to institutions.

The large number of relevant studies have been summarised in a series of reviews which illustrate typical findings. Kim, Larson and Lakin (2001) reviewed 29 comparative and longitudinal American studies between 1980 and 1999. In terms of adaptive behaviour, 19 studies showed significant improvements and two studies showed significant decline. In terms of challenging behaviour, five studies found significant improvements while two studies found a significant worsening in behaviour. Of the remaining studies where change was not significant, eight reported a trend towards improvement while six reported a trend towards decline.

Emerson and Hatton (1994) reviewed 71 papers published between 1980 and 1993 which examined the effect of moving from institutional to community services in the UK and Ireland. In five of six areas (competence and personal growth, observed challenging behaviour, community participation, engagement in meaningful activity and contact from staff), the majority of studies reported positive effects; only in one area (reported challenging behaviour) did the majority of studies report no change. Young et al (1998), reviewing 13 Australian studies of deinstitutionalisation published between 1985 and 1995, showed a similar pattern. In six of the nine areas studied (adaptive behaviour, client satisfaction, community participation, contact with family/friends, interactions with staff and parent satisfaction), the majority of studies report positive effects and in the remaining three (problem behaviour, community acceptance and health/mortality) the majority report no change. Kozma, Mansell and Beadle-Brown (2009) reviewed 67 papers published between 1997 and 2007. In seven out of ten areas (community presence and participation, social networks and friendships, family contact, self-determination and choice, quality of life, adaptive behaviour, user and family views and satisfaction) the majority of studies showed that community living was superior to institutional care. In three areas (challenging behaviour, psychotropic medication and health, risks and mortality) research reported mixed or worse results.

Thus the general finding is that community-based service models achieve better results for the people they serve than institutions. However, this large body of research also shows variation. Different kinds of services of the same general type achieve widely differing results when compared on the same measures. Comparing different models of service, the ranges of scores achieved overlap considerably (Mansell, 2006). Variation in performance reflects, in part, the range of abilities and characteristics of residents. People with higher support needs – whether because of the nature of their intellectual and physical disabilities, their challenging behaviour or social impairment, often experience less good outcomes than people who are more independent (Felce and Emerson, 2001). In the general context of deinstitutionalisation, they are also typically the last to get out of institutions (Wing, 1989) and, if they experience difficulties in living in the community, most at risk of being returned (Intagliata and Willer, 1982).

But variation does not only reflect resident characteristics. Demonstration projects have shown that it is possible to greatly increase the level of outcomes achieved for people with the most severe disabilities (Mansell, 1994; 1995) to a level higher than achieved in any institutional setting. It also reflects characteristics of the design of the services themselves (Felce and Perry, 2007). Most importantly, it reflects differences in staff performance. Previous research has suggested that the way staff provide support to the people they serve is a key determinant of outcome. This result has been found in comparative studies of houses versus other settings (Felce, 1996, 1998; Felce, de Kock and Repp, 1986; Felce et al., 1991; Mansell, 1994, 1995), in experimental studies within houses (Bradshaw et al., 2004; Jones et al., 2001; Jones et al., 1999; Mansell et al., 2002) and in regression studies (Felce et al., 2000; Hatton et al., 1996; Mansell et al., 2003). In general, it appears that, once the material and social deprivation found in institutions is addressed by their replacement by small-scale services in the community, the main predictors of at least some important outcomes are resident need for support (ie their adaptive behaviour) and the care practices of staff (particularly the extent to which they provide facilitative assistance or ‘active support’ (Brown, Toogood and Brown, 1987; Felce, Jones and Lowe, 2000; Mansell et al., 2005; Mansell et al., 1987). Thus the implication is that the shift from institutional care to living in the community is a necessary but not a sufficient condition for better outcomes for all residents. In addition to the change of accommodation, it is necessary to change the kind of staff support provided.

New congregate models

Institutions continue to be the dominant form of residential provision for disabled people in many other countries. For example, our recent study estimates that over a million people live in residential institutions in Europe (Mansell et al., 2007). Although some of these institutions are very similar to those closed in other countries, some are smaller, in more modern buildings, with higher staff ratios and expenditure. It is sometimes argued that these institutions are different from those included in the studies cited and that they provide a good quality of life for their residents. This position is not supported by the available empirical data. A recent study of institutions in France, Hungary, Poland and Romania (Mansell, Beadle-Brown and Clegg, 2004) showed that although there were differences between institutions in different countries, they provided similarly poor outcomes for residents as institutions studied in the UK, USA and Sweden in the 1970s.

Similarly, an audit of residential services in England, including small institutions provided as part of early attempts of replace large institutions, concluded that they failed to offer the improved quality of life achieved by the best services (Healthcare Commission, 2007). The UK government has now decided to close these ‘campus’ developments as well as the remaining large institutions (Department of Health, 2007).

Our recent review for the National Disability Authority of congregate housing compared with dispersed housing in the community (Mansell and Beadle-Brown, 2009) showed that dispersed housing was superior to cluster housing on the majority of quality indicators studied. The only exception to this was that village communities for people with less severe disabilities had some benefits. However, these only serve a less disabled population and they depend on a supply of people willing to live communally with disabled residents. They are therefore an important part of the spectrum of service provision but they are only ever likely to occupy a niche in the market for care. They are a marginal form of services, accounting for about 2% of residential provision in England. They are unlikely to be a feasible option across the board for people with intellectual disabilities.

Costs of community living

Evidence of effectiveness alone is not likely to be sufficient to persuade decision-makers to develop community living arrangements for everyone with intellectual disabilities. Costs have to be taken into account too. Understanding the costs of different service models is important to address the needs of those million disabled people who will sleep tonight in an institution in Europe; and to determining whether they face a future of rebuilt or refurbished institutions, or ‘villages’ or ‘clusters’, rather than their own home among the rest of us.

Research on costs of services for people with intellectual disabilities is dominated by American and British studies. American studies show that community-based services are less costly than institutions; British studies show that community-based services are more costly than institutions. How can this be?

It is clear that the per diem costs of American institutions have increased dramatically over the period in which community living has developed (Stancliffe et al , 2005). This reflects in part the moving out of less disabled people first; but it also reflects attempts to improve the quality of institutional care in response to repeated criticism (Mansell and Ericsson, 1996). So it seems likely that more and more staff were employed until, eventually, the costs of institutions overtook those of community services. It is also the case in the USA that staff in community services get paid less than institution staff . The lower unit costs of staff supporting people in community living have helped expand the total amount of residential accommodation available for people with intellectual disabilities.

In Britain, institutional costs have also increased, but to nothing like the same extent. Community-based services for people with severe and profound intellectual disabilities have much higher staffing levels and therefore higher costs. This cost difference has not stopped the movement to community living.

Rising institutional costs from a low starting point raise a particular issue for decision-makers. If institutional costs rise over time, then decision makers have to be careful about being over-cautious at the outset of the transition process. Cost comparisons that seem to make institutional care less expensive than community care today cannot be sustained in the medium term.

This explanation allows us to predict the outcomes in terms of cost-effectiveness given different starting positions. If existing institutional care is relatively less expensive, decision-makers can expect that transfer of the less disabled residents to good services in the community will be achieved at the same or lower costs and at the same or higher quality; cost-effectiveness in the community will be the same or better. More disabled residents in less expensive institutions will cost more in good community services but the quality will be higher and so cost-effectiveness in the community will be the same or better (and as we have just noted, decision-makers should not assume that they can keep institutional costs low). In more expensive institutions, decision-makers can expect that transfer of the less disabled residents to good services in the community will be achieved at lower costs and at the same or higher quality; cost-effectiveness in the community will therefore be better. More disabled residents in more expensive institutions will cost the same in good community services but the quality will be higher and so cost-effectiveness in the community will be better.

Overall, there is no evidence that community-based models of care are inherently more costly than institutions, once the comparison is made on the basis of comparable needs of residents and comparable quality of care. Community-based systems of independent and supported living, when properly set up and managed, should deliver better outcomes than institutions.

This is not really a surprising conclusion. The main element of cost is staff, so lower costs – or economies of scale - mean less staff support per resident. Congregate care settings – whether they are old long-stay institutions, residential campuses or clusters on one site might appear to cost less, but if they do it will be because they are providing fewer staff. For people with less severe disabilities this may not matter so much, so long as they are free to live the life they choose in decent circumstances in the community. Recent research illustrates this (Stancliffe and Keane, 2000; Felce et al, 2008). For people with severe and profound disabilities, however, less staff support is likely to mean poorer quality of life.

Conclusion

Ratification of the UN Convention on the Rights of Persons with Disabilities in May 2008 obliges us to develop community living that will replace institutional care. In addressing this task, we should be aware of the evidence from research that

1. Community living offers the prospect of an improved lifestyle and quality of life over institutional care for people with intellectual disabilities.

2. This applies to old and new institutions, whatever they are called.

3. It is no more expensive than institutional care once the comparison is made on the basis of comparable needs and comparable quality of care.

4. Successful community living requires close attention to the way services are set up and run, especially to the quality of staff support.

It is important to note that shifting from institutional to community-based models of care is not simply a case of replacing one set of buildings with another. Successful community-based services need to be carefully planned around the needs and wishes of individual people and then continually monitored and adjusted as people’s needs and wishes change. There is a large literature describing ‘good practice’ in the design and operation of community services. Much evaluative research and comment emphasises the risks that community-based services do not provide sufficiently skilled help for people with complex needs such as profound intellectual and multiple disabilities, challenging behaviour or mental health problems. Implementation lags behind research and development so, although good results have been demonstrated for people with complex needs living in the community, many people with complex needs do not yet receive the help they need to live a good life.

Living well in the community also requires adjustment to a wide range of services available to everyone, so that they are accessible to and effective for people with intellectual disabilities. Here too evaluation and audit often highlights the failure of generic services to respond sufficiently well. As well as changing the training of staff in these services, disability discrimination legislation is being used to require reasonable adjustment for disabled people.

This implies a new agenda for research, concerned more with comparison between the experience of people with intellectual disabilities and people without disabilities than with different kinds of disability service, focusing on all aspects of quality of life and concerned with generic as well as special services.

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