18 MENTAL HANDICAP RESEARCH, 1989; 2: 1 , 18 - 37 G) BlMH Publications

The effects of deinstitutionalisation on people with mental handicaps: A REVIEW David Allen, Principal Clinical Psychologist and Honorary Lecturer in Mental Handicap, Resettlement Team, Ely Hospital, Cowbridge Road West, Cardiff, CF5 5XE

Submitted February 1988 Revision accepted July 1988

ABSTRACT The deinstitutionalisation of people with mental handicaps has given rise to a considerable literature regarding the effects of this policy on service users. This review describes the major findings in relation to changes in adaptive behaviour, activity levels, social interaction, community integration, disruptive behaviour, and quality of life. Individual and environmental influences are discussed, together with possible foci for future research.

INTRODUCTION “Deinstitutionalisation” is an all-embracing term which describes the movement of people from institutional forms of care, often hospital based, to other apparently superior environments. At its most basic this process simply involves the relocation of people from one setting to another. At its most sophisticated it represents an attempt to reverse in a coherent and systematic way the deleterious effects of congregate living, enforced isolation from normal society, restricted life opportunities, and restricted personal choice.

Contrary to much popular belief the process of people leaving mental handicap institutions is not a recent phenomenon. There is a small but significant body of evidence to indicate that such processes were occurring long before the full-blown emergence of the deinstitutionalisation move- ment in the 1960s (de Silva and Faflak, 1975; Heal, Sigelman, and Switzky, 1978). Although the motives for deinstitutionalisation before this time are not well documented there is a suggestion that economic factors were, at times, an important influence. McCarver and Craig (1974), for example, link the increased placement opportunities seen in the 1 Jnited States during and around the years of the Second World War to the need to strengthen the depleted work force of the time, as well as to the decline in the eugenics movement.

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While economic factors are still relevant, inasmuch as community care has sometimes been promoted as a cheaper option than hospital based provision, the origins of the current movement lie more in social concerns and policy than in pragmatism. The writings of Goffman (1961), Oswin (1978), Wolfensberger et al. (1972), and others raised serious practical and ethical issues about the provision of institutional forms of care. These statements were substantiated and reinforced by a series of enquiries into hospital services in the United Kingdom (Martin, 1984), and by a succession of legal actions in North America (Landesman and Butterfield, 1987). Thus, while Emerson (1985) states that “the essential goal of the deinstitutionalisation movement was, and remains, nothing less than the reversal of the devaluation experienced by retarded persons as members of a deviant social group”, in practice different deinstitutionalisation pro- grammes are likely to vary in terms of the degree to which they subscribe to this statement, both as a function of their history and their date of commencement.

According to Butler and Bjaanes (i978), there are three basic assumptions which underlie the shift in policy from institutional to community care for people with mental handicaps. These are:

that total institutions have failed to increase the competence of the people living in them and may have detrimental effects on the development of their social skills; that an environment providing “normal social contact” and the potential for “normal social integration” has a positive “normalising” effect on people with mental handicaps; and that community care facilities provide relatively “normal” environments and therefore have a “normalising” effect on people with mental handicaps. The key question in evaluating the effects of deinstitutionalisation,

therefore, is whether variables like social competence and social integration are increased as a result of the process. If such changes are found to occur it becomes important to identify the factors which maximise these changes.

While the literature on deinstitutionalisation now goes back several decades, it is only comparatively recently that the research has attempted to address these questions. The bulk of the earlier work was largely concerned simply with studying the rate of readmission to institutions of people who had been placed in the community. Following on from this

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numerous studies were published (Windle, Stewart, and Brown, 196 1; Jackson and Butler, 1963; Hemming, 1982; Intagliata and Willer, 1982) which attempted to identify factors associated with “successful” (non- readmission) and “unsuccessful” (readmission) placements. Crawford, Aiello, and Thompson (1979), summarising the relevant findings in this area, reported: that the occurrence of behaviour problems in community settings was the best predictor of readmission; that demographic features and pre-discharge functional behaviour were only inconsistently related to community success; and that environmental factors were an important influence on the behaviour of people in community settings. These authors, together with Landesman-Dwyer (198 l), urged that the prevailing concept of a “successful” placement needed to be reconsidered, and that the research should concentrate more on factors associated with longer- term community adaptation.

More recently the literature has appeared to follow these suggestions and has tended to focus on more relevant outcome measures of deinstitution- alisation. These include changes in people’s adaptive behaviour, activity levels, social interaction, and degree of community integration. The general research findings in each of these areas will be discussed, together with data on transition effects, environmental influences, and quality of life measures.

ADAPTIVE BEHAVIOUR Changes in adapative behaviour have perhaps become the most frequently used outcome measure of deinstitutionalisation (Emerson, 1985). Several studies exist which compare matched groups of people with mental handicaps in institutional and community settings (Eyman et al., 1977; Keith and Ferdinand, 1984; Sokol-Kessler et al., 1983; Felce, de Kock, and Repp, 1986). The overall findings of these studies appear to confirm that institutional care inhibits, or even decreases, levels of adaptive behaviour, whereas community settings facilitate such development. It has also been shown that people transferring from institutions to the community show gains as a consequence (Close, 1977; Schroeder and Henes, 1978; Bell and Schoenrock, 198 1; Willer and Intagliata, 1982; Conroy, Efthimiou, and Lemanowitz, 1982; Locker, Rao, and Weddell, 1983; Conroy and Bradley, 1985; Felce, de Kock, and Repp, 1986). Kleinberg and Galligan (1983), in a study which reports changes of this nature in a group of 23 people moved from a 350 bed centre to three small, 8-10 bed, community units, con-

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cluded that the observed improvements in people’s functioning represented a manifestation of behaviour already present in their skills repertoires rather than new learning. This is perhaps partly substantiated by the finding of Felce, de Kock, and Repp (1986): that staff in community settings provide people with a far greater number of opportunities for constructive activity than institutional staff. While some studies (Tyerman and Spencer, 1980; Rawlings, 1985a) have demonstrated that establishing more “normalised” environments in large institutions can produce similar changes, these seem to have been less substantial than the changes observed in people with comparable levels of handicap upon moving to smaller community homes (Landesman and Butterfield, 1987).

Research by Hemming, Lavender, and Pill (1981) suggests that adaptive behaviour gains are not inevitable consequences of deinstitutionalisation. In their study of people moving from large institutions to small units it was found that people with IQ scores of above 50, who had moved from institutions which had allowed reasonable freedom, showed little or no change in adaptive behaviour. Work by Seltzer, Seltzer, and Sherwood (1982) suggests that older deinstitutionalised people are less likely to show marked gains in this sphere, while O’Neill et al. (1985) found only limited gains for people with more severe handicaps. However, if deterioration in adaptive behaviour is associated with prolonged exposure to institutional life (Burkhart and Sein, 1979), then absence of further deterioration, as opposed to skill gains, may be a valid measure of deinstitutionalisation effects (Seltzer et al., 1981).

When improvements have clearly occurred, there is some evidence to suggest that they may fade over time (Kleinberg and Galligan, 1983; Hemming, Lavender, and Pill, 1981). Hemming (1986) suggests that initial gains in adaptive behaviour may be the consequence of a Hawthorne effect*, resulting in increased staff enthusiasm in the early stages of new projects.

As previous reviewers have osbserved (Heal, Sigelman, and Switzky, 1978; Emerson, 1985; Haney, 1988a), studies in this area suffer from a

*A term derived from a series of experimental studies aimed at improving the productivity of factory workers which were conducted in the 1920s. Whatever ma’or changes the experimenters made, productivity increased. The conclu d’ ed that the observed improvement in morale and output was part\ a function of the new working conditions experienced by the staff, toget er with the fact that they were the centre of managerial and research attention (Hardy, 1985).

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number of methodological weaknesses. There is a marked overdependence on rating scales rather than observational measures of adaptive behaviour, and a relative absence of studies employing longitudinal assessments and control groups. While ethical considerations tend to preclude randomised selection of study participants, this further restricts the general inferences which can be made (Butterfield, 1987). The research by Landesman (1987) appears exceptional in its attempt to introduce a degree of randomisation into the allocation of people to traditional institutional, modified institutional, and community settings.

ACTIVITY LEVELS Increased activity levels are often hypothesised as likely outcomes of deinstitutionalisation, and are obviously closely related to changes in adaptive functioning. Evidence to support this phenomenon comes from Locker, Rao, and Weddell (1 984), Rawlings (1985a, b), Braddock and Heller (1985), Felce, de Kock, and Repp (1986), Thomas et al. (1986), Shah and Holmes (1987), and Raynes, Sumpton, and Flynn (1987). O’Neill et al. (1981) studied the effects of deinstitutionalisation on activity levels by collecting data in the pre-discharge setting, in the community setting eight months after discharge, and then again at two and a half years after discharge. The study is one of the few to have collected data in the institutional setting prior to relocation. The results showed that the frequency and diversity of people’s activities increased substantially between the initial sampling point and the first post-discharge sampling point, and then levelled off by the time that the third sampling point was reached. While people showed considerable increases in activity rates outside their place of residence, much of their increased activity was based in the home and around household tasks. According to Hemming (1986), an increase in the rate of domestic activity is the most consistent finding in the deinstitutionalisation literature.

Once again, however, substantial increases in activity levels should not be regarded as inevitable consequences of a move out of an institution. Rratt and Johnston (1988) found only limited and non-significant improve- ments. Similarly, Evans et al. (1987), in a report of the effects of a move to ordinary housing on four individuals, found no major increases in activity levels, although some changes occurred in the nature of activities undertaken (for example, increased participation in social activities in the community). This led the authors to conclude that there was a constant

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need for care staff to offer opportunities and encouragement for people to engage in activities. Saxby et al. (1988) attributed a decline in activity levels observed in some people at two-year follow-up to a reduction in the amount of instruction and physical guidance available from staff. The programmed use of domestic work to increase the activity levels of people with severe and profound mental handicaps living in ordinary housing has been described by Mansell et al. (1984).

The work of Hemming, Lavender, and Pill (1981) suggests that people’s initial ability and previous environment may influence findings in this general area. In their study the move to a smaller setting resulted in a decrease in the rates of “normal”, non-routine activity for more able people. This was related to the fact that they no longer had access to on-site activities to which they could go unaccompanied, and to the fact that the relatively sparse community facilities available had failed to compensate for this loss. Raynes and Sumpton (1987) conclude that this aspect of care, and others, is more dependent on the type of residence in which people live than on their level of handicap.

SOCIAL INTERACTION Increased social interaction within smaller living units following deinstitutionalisation has been reported in a number of studies (Hemming, Lavender, and Pill, 1981; O’Neill et al., 1985; Thomas et al., 1986; Felce, de Kock, and Repp, 1986). While increased staffing levels are often found in community facilities, evidence that better staff resident ratios per se correlate positively with improved interaction is lacking. Landesman- Dwyer (1981) quotes several reports which suggest that enhancing staffing levels is an ineffective strategy for increasing interaction if it occurs in isolation from staff training and reorientation. The consensus finding of these studies is that increasing the number of available care staff has no effect on the frequency of positive, staff-initiated interactions. Instead, more staff-resident interactions tend to occur when there are less staff members present.

Data cited in Felce (1988) suggest that positive gains only occur in small community settings when there is a reduction in the number of people being cared for by one or two staff members. With groups of 5- 10 people in institutional or large community units, staff-resident contact and resident engagement remained low irrespective of whether one, two, three, or four staff members were present. Felce et al. (1987) also suggest that

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there may be qualitative as well as quantitative changes in smaller settings. Care staff in small group homes were found to be more encouraging of appropriate behaviour, a factor which could obviously be related to the skill gains discussed earlier. Greater attention was also paid to inappro- priate behaviour, although the data do not permit an interpretation to be made of the consequences of this increased responding.

Other general findings in this area have been summarised by Repp, Felce, and de Kock (1987). A disproportionate number of staff interactions tend to occur with a relatively small number of people, particularly those perceived as being more attractive and intelligent, or less disruptive and more participative. Older people, who have spent longer periods in institutional care, receive less attention. Structured settings improve interaction, as does involving staff in decision making.

COMMUNITY INTEGRATION Improved social integration within the community has been reported in some studies (Evans et al., 1987; Kleinberg and Galligan, 1983). Raynes et al. (1987a) found that less than 50 per cent of people living in hospital had visited shops, pubs, or cafes for at least a month prior to their data collection. This was in contrast to the people surveyed who were living in a hostel, more than 50 per cent ofwhom had visited such venues during the previous month, and 88 per cent of whom had also visited a club. People living in private or voluntary sector provision, or with their parents, showed a greater variation in activities than those resident in hospital but less variation than people living in hostels. Across all settings the use of community facilities, such as public transport, banks, and cinemas, was low. It was found by de Kock et al. (1988) that people living in small group homes had approximately 250 community contacts per year, whereas the average number for people living in institutional settings was seven, and for those in large, community-based units it was 72. Of the contacts of the people living in small group homes 54 per cent were based around shopping. Dalgleish (1985) found that the amount of family contact received by people in different forms of residential care was principally a function of the age ofthe person with a mental handicap and ofthe distance to be travelled by relatives rather than the type and location of the residential unit.

Other common themes in this area are that the residential environment is the main venue for activities and that people’s main source of support

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comes from official carers rather than more informal community contacts (Gollay et al., 1978; McDevitt et al., 1978; Malin, 1982; Crapps, Langone, and Swaim, 1985). Saxby et al. (1 986), in an observational study of people in the company of care staff in shops, pubs and cafks, found encouraging results in terms of meaningful participation in these settings, but rates of interaction with ordinary citizens were low. There is also some evidence that the use of community facilities declines after an initial increase at the start of placements (Birenbaum and Re, 1979; Bell and Schoenrock, 1981).

In a small-scale study of nine individuals Donegan and Potts (1988) reported that while people were knowledgeable about the facilities that were available locally, and were able to use them, they failed to do so. The authors suggest that, while they had the skills necessary to cope with the practical demands of everyday life, they lacked the skills to be able to develop new social relationships. It seems important, therefore, not to limit preparatory training for community living to survival skills; social skills training appears to be at least equally important (McConkey, Naughton, and Nugent, 1983; Romer and Heller, 1983; Atkinson, 1985).

In designing community programmes another common error has been to concentrate on the residential component, to the relative exclusion of other service elements such as day and leisure activities (Atkinson, 1988). It is hardly surprising, therefore, that Raynes, Sumpton, and Flynn (1987) found that, across all the types of residence studied, only a small number of people were engaged in daytime occupations that involved employment; the vast majority still spent their days in adult training centres or comparable environments.

TRANSITION EFFECTS All of the outcomes described so far have been, in theory at least, potentially positive consequences of deinstitutionalisation. It has also been suggested, however, that the process can be an extremely traumatic experience for people with mental handicaps, just as the pressure of moving house is a recognised cause of stress in the normal population (Hopson, 1981). There is evidence that elderly people who are not mentally handicapped show increased rates of mortality following relocation, and similar results (Braddock and Heller, 1985) have been found in people with mental handicaps. While such dramatic effects are apparently rare within the latter group, several studies have reported changes in levels of anti-social or disruptive behaviour following

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relocation. Cohen er al. (1977) studied the effects on 66 people of movement from a large institution to a smaller setting with more intensive programming. The results showed that people functioning at a lower level on discharge showed increases in adaptive behaviour, but also increased maladaptive and antisocial behaviour. People of higher ability became more withdrawn, and also showed decreases in language skills and independent functioning. Hemming, Lavender, and Pill (1981) also found increased rates of maladaptive behaviour in the adults they studied in the four months after transfer, those of lower ability again being the most severely affected. Increases in self-directed behaviours accounted for most of the observed changes.

While the majority ofeffects ofthis nature appear to be of short duration, and are generally compensated for by the more positive gains made, Martindale and Kilby (1982) provide evidence to suggest that for some people such deteriorations in behaviour may be more enduring. Schumacher, Orammen, and Wisland (1986), in a controlled study, failed to find consistent effects amongst two groups of people relocated to improved institutional settings, but noted that relocation reactions were particularly idiosyncratic.

Slack, Slater, and Webley (1984) propose that some relocation stress may be generated by undue pressure on individuals to change aspects of their social and personal functioning. Heller (1988) suggests that the stress of relocation may be reduced by keeping a number ofvariables constant in the short term. Important features to try to maintain might include social networks (in view of the preceding evidence on difficulties in forming new relationships), continuity in daytime routines and activities, and retention of personal possessions. Changes should be introduced at a pace which is acceptable to the people concerned, rather than being determined purely by the enthusiasm of new staff groups. While a process of incremental change has a number of logical attractions, monitoring mechanisms would need to be built in to ensure that the service did not become stagnant.

Heller, Bond, and Braddock (1 988) also provide data on stress reactions among relatives of people being deinstitutionalised. While 78 per cent of families reported high stress levels initially, and 81 per cent were at first opposed to institutional closure plans, these levels had dropped substantially 12 months later.

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ENVIRONMENTAL INFLUENCES Some of the studies quoted above suggest that there are various individual factors, such as a person’s initial level of ability and age, which may have a moderating effect on the impact of deinstitutionalisation. Various environmental factors have also been pre-supposed to have a similar influence; in particular, the location, appearance, and size of the community establishment.

Wolfensberger and Thomas (1983) place considerable importance on community living developments being located in residential areas with good access to local facilities, on the assumption rhat this will facilitate integration. Butler and Bjaanes (1978) found that services located in more urban areas did provide more community contact, but Landesman-Dwyer (1981) concluded that there was no substantial evidence to support the notion that this was a general trend. Rawlings (1985a, b) found that geographical iocation of a residence had little effect on people’s quality of life compared with factors such as staff autonomy and initiative, improved staff ratios, and more service user oriented practices.

Overviews of experience gained from the Sheffield Project (Dalgleish, 1983; Atkinson, 1988), in which a variety of newly built, Wessex-style hostels were developed, suggest that the external appearance of residences can have some impact on service users. The hostels studied could not merge naturally into the community, thus acting as a “badge of identification” for the people who lived in them and influencing the views of ordinary citizens in the neighbourhood. The internal design of the hostels also failed to provide natural domestic environments.

While it is generally assumed that smaller sized residential facilities will be superior in terms of normalisation outcomes, there is very little evidence to support this (Balla, 1976). Landesman-Dwyer (1981) reports that crude comparisons of very large and very small residential establishments confirm the obvious fact that depersonalising practices are more frequently found in the former (Hull and Thompson, 1980). However, within a particular type of establishment, the size itself is not related to measures of quality of care. Butler and Bjaanes (1978), for example, found that some small, family style homes were more restrictive for their inhabitants than some large, board-and-care establishments. Sackett and Landesman-Dwyer (1977) found that medium sized homes (catering on average for six people) had the highest rate of dyadic interaction, and small homes (catering for two people) the lowest. Landesman-Dwyer, Stein, and Sackett (1978)

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concluded that more positive social behaviours occur in larger settings. These findings probably reflect the fact that, when people move to smaller settings, size is only one of the many variables likely to change. Knight, Weitzer, and Zimring (1978), quoted in Landesman-Dwyer (1981), have therefore cautioned that settings which meet the commonsense notions of “normal” and “homelike” do not in any way guarantee positive changes in the behaviour of residents or their carers.

SERVICE MODELS AND ORIENTATION While it may be argued that all the evidence presented so far is concerned with the impact of normalisation on services for people with mental handicaps (Heal, Sigelman, and Switzky, 1978), direct attempts to measure the effect of adherence to the principle on service outcomes are extremely limited. Eyman, Demaine, and Lei (1979) examined the relationship between six ratings of residential environment derived from a factor analysis of PASS 3 (Wolfensberger and Glenn, 1975) and changes in the adaptive behaviour of people living in a group home. Normalisation related administration practices, the blending of the home with the neighbourhood, location and presence of services, and comfort and appearance, were all positively related to adaptive behaviour gains. More surprisingly, one factor related to administrative control and structure was negatively related to improvements in self-sufficiency skills. Eyman, Borthwick-Duffy, and Sheehy (1 987), in a similar study of foster care homes, used a four-factor version of PASS 3. Administration ofservice, and proximity and access, were both found to be moderately associated with improvements in adaptive behaviour, while proximity and access was also related to decreases in problem behaviour. Conroy and Bradley (1985), in their large scale study into the rundown of Pennhurst State School and Institution, again used a shortened version of PASS 3 to study the relationship between residential environment and service user outcomes. In a partial correlational analysis which controlled for people’s functional level across different establishments, a positive relationship was found between the overall normalisation rating score of a residence and the adaptive behaviour gains ofthe inhabitants. In all three ofthese studies, the general correlations obtained were small, and consequently the significance levels low.

Other studies using the normalisation instruments devised by Wolfensberger and his colleagues are reviewed by Flynn (1980); these having tended to focus mainly on the instruments’ structure rather than their

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relationship to outcomes. The continuing dearth of research in this area is probably explained by the fact that, although the instruments appear in the guise of assessment tools, their main use has been in the teaching of normalisation principles. Research is also complicated by the fact that normalisation is seen as both a means and an end, and to this extent is both an independent and dependent variable.

The only clear overall finding at present is that there appears to be as much variation in terms of outcomes within particular models (for example, staffed hostels) as there is between different models (for example, staffed hostels and hospitals) (Vitello, 1984; Raynes et al., 1987). This somewhat unsatisfactory situation is primarily a result of the diversity of services included under umbrella terms such as “community living development”. Several workers have attempted to address this problem by producing a system for classifying environments in relation to service user outcomes (Moos et al., 1979; Butler and Bjaanes, 1977; Hill and Lakin, 1986). Landesman-Dwyer (1985) provides a selective review of the available systems. The classification suggested by Landesman (1986a) herself takes into account service structure, service function, and historical origins. It is hoped that the development of an acceptable taxonomy will enable valid comparisons to be made across studies and reduce errors resulting from inappropriate grouping of heterogeneous facilities (Landesman and Butterfield, 1987). Whether a categorisation can be devised to encompass all possible models of community services is doubtful though.

QUALITY OF LIFE MEASURES Landesman (1986b) claims that variables such as quality of life and personal life satisfaction have generally been given a secondary status in studies into the effects of services. Yet, as Heal and Chadsey-Rusch (1985) state: “in the evaluation of deinstitutionalisation outcomes it seems more basic to assess the citizen’s preferences than to assess ‘normalisation’, the experience, the skill development or the ‘residential climate’ of living alter- natives”. According to Vitello (1984), quality of life is a multidimensional construct. As applied to deinstitutionalisation in particular, its dimensions include normalised and decent living conditions, reasonable degrees of autonomy, and opportunities for general growth and happiness.

Heal and Chadsey-Rusch (1985) discuss two issues which, in combi- nation, probably explain the reluctance of researchers to explore these factors. First, concepts such as “happiness” are difficult to define in

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operational terms, and perhaps impossible to describe in anything other than very subjective and value-laden ways. Secondly, studies by Sigelman et al. (1 98 1) have demonstrated that response bias is a serious problem in interviewing people with mental handicaps. A third factor can be added to these: that it is still only comparatively recently that the views of service users have been held in any regard. While workers like Edgerton were interviewing people with mental handicaps as part oftheir studies as early as 1960, this work was very much an exception (Edgerton, Bollinger, and Herr, 1984).

Emerson (1985) suggests that the methodological problems inherent in measuring personal life satisfaction should merely be regarded as obstacles to be overcome in the research process, not as a licence for not addressing the issue. He proposes that there are a number of indicators of quality of life which could meaningfully be employed to study the effects of deinstitu- tionalisation; such as social and demographic characteristics relating to housing, employment, health, education, leisure, and environment, as well as measures of community participation, power, and autonomy. Available data regarding such measures are limited and not encouraging. Common findings are that people with mental handicaps living in the community are often poor, have restricted access to and control over their own money, have restricted access to their place of residence, and experience problems in obtaining help from generic services (Gollay et al., 1978; Halpern et al., 1980; Raynes, Sumpton, and Flynn, 1987; Donegan and Potts, 1988). Kishi et al. (1988), in one of the few studies to date to employ a non- handicapped control group, found that people with mental handicaps in general had less choice than other citizens; the degree of available choice being related to level of handicap, the more handicapped having less choice.

Heal and Chadsey-Rusch (1985) developed a 50-item scale in an attempt to assess life style satisfaction. The scale covers leisure, location, staff, and services, and is administered by interview. While Yes-No questions are employed, which makes the scale susceptible to response bias, the scoring contains adjustments for acquiescence. The study compared the life style satisfaction of people living in ordinary apartment flats with people resident in a 58 bed, intermediate care facility. While people living in the apartments varied considerably in their ability and desire to explore their local community, they had more autonomy to do so. In contrast, people living in the intermediate facility had very regulated activity schedules. The results showed that people in the apartments had higher life style satis-

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faction scores, which led the authors to conclude that this was consistent with the notion that satisfaction is positively correlated with less restrictive settings.

While studies of this sort are still very much within their infancy, recent publications have shown an increasing trend of attempting to seek service users’ views (Lowe, de Paiva, and Humphreys, 1986; Humphreys, Evans, and Todd, 1987; Jones and Bassett, 1987). Such studies have inevitably focused on people who are comparatively able, and considerable problems are likely to remain in obtaining the views of people with more severe handicaps.

CONCLUSIONS Given the varying results which have been quoted, is it possible to draw any general inferences regarding the effects of deinstitutionalisation? Despite apparently contradictory findings, the following trends seem fairly clear from the available data.

Improved quality of life, as measured by various analogues such as improved adaptive functioning and community integration, is a possible but not inevitable outcome of deinstitutionalisation. Com- munity placement must therefore be recognised as being a means by which these improvements can be obtained rather than an end in itself. Simply relocating people with mental handicaps into com- munity settings is unlikely to have any lasting positive effect on their quality of life.

In helping people make the most out of community placement, as much emphasis should be placed on the acquisition of social skills as on survival skill development. The data do not support the simplistic notion that smaller environments are more effective in terms of normalised outcomes. Considerable variation in outcomes is not only likely between different service models, but also within different facilities based on the same model.

“Transition shock” appears to be a highly individualistic phenom- enon, the effects of which fade over a relatively short period of time. Landesman-Dwyer and Butterfield (1987) suggest that while there is now

a massive literature on the topic of deinstitutionalisation, the data cannot

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be organised in such a way as to answer questions such as whether there should be any institutional care at all, or whether normalisation is desirable or attainable for everyone. They recommend that more research needs to be carried out into the potential interactions between personal and environmental characteristics. They also suggest that much more can be learned from historical studies of social policy development.

In addition to a general strengthening of research methodologies, there are at least three other aspects of future study which seem important. At present there is a considerable body of data which suggests that a variety of service design features are necessary conditions for the establishment of good quality services (Felce, 1988; Haney, 1988b). Very little is known about the relative contribution of these components to final outcomes, or about possible covariations between variables. More sophisticated models of quality services, therefore, need to be developed and researched. There is also a need for more longitudinal studies. Very little information is currently available about the lives of people more Ihan 5-10 years after discharge, especially information about whether any gains made initially are maintained over such a period.

Finally, research is needed to demonstrate that the positive results of many pilot schemes for discharging people into the community can be replicated on the scale demanded by the increasingly rapid closure of the mental handicap institutions. There is already some evidence to suggest that this may be problematic. Bratt and Johnston (1988), for example, interpreted the failure to produce dramatic improvements in the lives of five people who moved from hospital to a community setting as a symptom of the “second generation” nature of the project, which was an attempt t‘o replicate similar developments within the area and consequently lacked the “pioneer spirit” and thorough staff preparation of earlier ventures. Landesman (1988) has observed that when services attempt to copy exemplary models the emphasis may erroneously be on the structural rather than the functional features. Data from the Sheffield Development Project suggest that such a preoccupation with buildings may lead to the provision of more institutional settings (Atkinson, 1988).

In expanding community provision, therefore, it seems vital: to establish a clear service mission; to attend in some detail to staff preparatory and refresher training; to have an evolving rather than a static management system; and to set up meaningful methods of monitoring. An inability, or unwillingness, to meet these requirements will mean an increased risk of

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service decay and a subsequent reproduction of the impoverished conditions seen in many of the old institutions in new community settings.

REFERENCES ATKINSON, D. (1985). With time to spare: leisure pursuits of people with mental handicaps.

Mental Handicap, 13:4, 139- 140. ATKINSON, D. (1988). Residential care for children and adults with mental handicaps, In

SINCLAIR, I. (ed). Residential Care: the Research Reviewed. London: HMSO. BALLA, D. A. (1976). Relationship of institution size to quality of care: a review of the

literature. American Journal of Mental Deficiency, 81:2, 11 7- 124. BELL, N. S., SCHOENROCK, C. (1981). Changes over time in the community: findings of a

longitudinal study. In BRUININKS, R. H. er al. (eds). Deinstitutionalisarion and Community Adjustment of MentaUy Retarded People. Washington: American Association on Mental Deficiency.

BIRENBAUM, A,, RE, M. A. (1979). Resettling mentally retarded adults in the community - almost four years later. American Journal of Mental Deficiency, 83:4, 323-329.

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