Deinstitutionalization: Experiences in Other Countries

Jos van Loon, 2006

Abstract

In many countries the number of places in institutions is considerable reduced. In the past 25 years on an international level many people with intellectual disabilities moved from larger institutions to smaller houses in the community. This chapter is a brief study of the literature with regard to deinstitutionalization in other countries. Deinstitutionalization is in other countries realized and accepted on a large scale, and thus deinstitutionalization as a social policy decision is feasible. I specify the multitude of factors that brought about the processes of deinstitutionalization and summarize the abundant evidence concerning the positive effects of deinstitutionalization for service users.

Introduction

In many countries there has been a considerable reduction in the number of places in institutions, among other things under the influence of the criticism on institutional care and of the normalization principle. In the past 25 years, on an international level many people with intellectual disabilities moved from larger institutions to smaller houses in the community.  At first only people with a mild or moderate intellectual disability moved, whereas people with extensive needs of support were thought to be better of in larger facilities (Ericsson & Mansell, 1996). The community services, however, came to be so well developed that they could even offer support to those with the most extensive needs. According to Ericsson & Mansell (1996) there are dramatic changes in the circumstances under which people live and in their quality of life. They mention the material richness of the living environment, the opportunity they provide for more privacy, choice and independence and the scale and quality of the relationships they offer. When people move they can experience important and multifaceted improvements in their conditions, discovering new ways of living, new activities, and new relationships within the ordinary community.
In the United States in the 1970s the institutions were increasingly seen as a segregating type of care. The opposite of segregation, which is integration, was therefore defined as the opposite of institutionalisation, which is deinstitutionalization (Van Gennep, 2000). In the last decades of the 20st century, from the 1970s, also in Europe, especially in Sweden, Norway and Britain there has been chosen for deinstitutionalization. In the 1980s the development of community services in these countries reached sufficient levels to permit the final abandonment of institutional care (Ericsson & Mansell, 1996).  So in other countries, especially the United States, Britain, Australia, New Zealand and the Scandinavian countries there is by now on a large-scale experience with the process of deinstitutionalization. This also led to a wealth of information, among other things concerning the consequences for clients. There are many publications on this subject (De Kock, Saxby, Thomas and Felce, 1988; Larson and Lakin, 1989; Larson and Lakin, 1991; Emerson and Hatton, 1996; Ericcson & Mansell, 1996; Tuvesson and Ericsson, 1996; Stancliffe & Abery, 1997; Tossebro, 1999). Emerson (2004) argues that as to deinstitutionalization and supported living the rest of the world is largely invisible. As appeared among other things from research by Emerson et al. (1996) compared to other countries the Netherlands are behind in the field of deinstitutionalization. Or stated otherwise: compared to other countries in Europe the Netherlands still have a high degree of institutionalisation. Where other countries chose for deinstitutionalization, in the Netherlands   they chose from the 1970s to improve the institutions. The institute was no longer seen as a hospital, but as a community- replacing commune, to the model of a village (Van Gennep, 2000).
In this chapter I want to review some literature on deinstitutionalization to study experiences in other countries in relation to the process in Arduin. There is a tremendous amount of literature to be found on deinstitutionalization-processes in e.g. the United States of America, Britain, the Scandinavian countries, Australia, and New Zealand. I don’t had the pretension to do an exhaustive literature review on the subject, but I wanted to gather enough information to get an insight in what happened in other counties, why did it happen, and what where the results of this process? In the following I will discuss information on deinstitutionalization in the United States of America, Britain and the Scandinavian countries.


Unites States of America

Anderson, Lakin, Mangan and Prouty (1998) studied the process of thirty years of depopulation and closure of institutions in the U.S. The first state institution for persons with intellectual disabilities in the U.S opened in 1848. In 1968 the number of people with intellectual disabilities began to fall. In 1995 populations of state institutions for persons with intellectual disabilities have been reduced by two thirds of 1970 totals (Lakin, Braddock, en Smith, 1996). By June 2000, total large state facilities populations had decreased to about 31.3% of the total in June 1977. In June 1977, 35.8% of residents were 21 and younger; on June 2000 4.5% of large state facility residents were 21 and younger. In June 1977, persons 40 years or older made up 23% of large state facility residents, whereas in June 2000, persons 40 years and older made up 61% of large state facility residents 1977 (Lakin, Braddock and Smith, 2001). A number of social, political and economic factors have converged to propel the depopulation of state institutions (Anderson, Lakin, Mangan and Prouty, 1998).In the 1950s, advocacy influences first became evident in the United States when parents of people with intellectual disabilities, particularly as represented by the Association for Retarded Citizens (since renamed “the ARC”), began to advocate on behalf of families and individuals with intellectual disabilities in state institutions. By the 1960s, the ARC was a visible and strong advocate for the development of community living arrangements. Recognition of the rights of persons with disabilities to live in and to participate in society was directly recognized in the Rehabilitation Act of 1973, while denial of basic human rights and dignity of state institution residents was given wide-scale attention in public media exposes of the conditions of institutional living. Courts also greatly influenced the depopulation of state institutions. In all, 70 court cases between 1971 and 1996 required substantial or total state institution depopulation. Financial legislation also had a significant impact on supporting children with intellectual disabilities at home, in education and in the community. Underlying all of these factors there has been a growing acceptance of the proposition that people with intellectual disabilities deserve benefit from membership in the community and have fundamental rights to it. As a result the depopulation of state institutions in the U.S. has taken place unabated every year for each of the past 30 years. Although deinstitutionalization literally connotes a process of discharging people from institutions, the efforts to avoid institutional placement are particularly critically important. Actually this accounted for relatively more of the reduction in state institutional populations than has the number of discharges, although both have been important. In addition to economic and social incentives, research supported the depopulation of state institutions. Investigators effectively described the nature and limitations of institutional living; other investigators presented generally positive descriptions of community living and strong and consistent evidence that on average and for persons with widely ranging levels of impairment, living in state institutions as compared with community residential life is detrimental to development of daily living skills. A review of 18 research studies by Larson en Lakin (1989) following the movement of 1350 people – the majority having severe or profound disabilities – from large institutions to small community settings between 1976 and 1988 found the following:

In these studies, smaller residential settings had a positive impact on the ability of people with intellectual disabilities, regardless of level of disability, to gain in the areas of self-care and domestic skills. Living in smaller settings may be especially beneficial to people with severe and profound disabilities by promoting greater growth and independence in self-help and adaptive behaviour skills. But, the benefits of community living go beyond improvement in ability, offering the opportunity to live in the same communities as the general population and to learn to function as a part of those communities.
Many studies have examined parental attitudes and expectations related to deinstitutionalization. Twenty-one such studies reviewed by Larson and Lakin (1991) reported on observations by parents regarding the move from institutions to the community, and offered suggestions for families and individuals in making the transition. From these studies, the following conclusions emerged about parent attitudes toward their sons and daughters lives in institutions and in the community:

Stancliffe and Abery (1997) assessed day-to-day choices available to former institution residents with severe / profound intellectual disabilities before and after deinstitutionalization and compared these with peers who remained in the same institutions. Data were gathered annually for both groups for 3 years. Personal characteristics of the two groups did not differ significantly at baseline, except that “stayers” exhibited more challenging behaviour. This was controlled by using baseline challenging behaviour as a covariate in group comparisons. Overall, “movers” exercised significantly more choice, although groups did not differ at baseline. Effect of deinstitutionalization did not differ with level of disability. Contrary to the assertations of some observers, “movers” with profound intellectual disabilities also enjoyed greater personnel control than did “stayers” who functioned at the same level. However the absolute level of choice available to both “movers” and “stayers” was very low.  As Stancliffe and Abery state, these findings, together with those of earlier deinstitutionalization research, provide a clear empirical support for continued deinstitutionalization of all persons with intellectual disabilities, regardless of severity. The low levels of choice available to “movers”, however, serve as stark reminder that much remains to be done to provide opportunities for choice with severe / profound mental retardation in the community.
John Howe, Robert Horner and Stephen Newton (1998) compared supported living and traditional residential services. Results of the study indicated that supported living participants experienced significantly more community variety, did community activities more frequently, and preferred community activities more frequently. Further they engaged in activities with more people and did activities with these people more frequently. They found that the costs were similar for providing supported living and traditional support.

Britain       

Within the United Kingdom, numbers of people in institutional care reduced dramatically over the past three decades and this has mainly been replaced by staffed housing (group homes) (Beadle-Brown et al., 2003). This is the predominant model of provision in England, although larger residential services still exist and, in contrast, recent developments towards supported living are increasing.
In the 1950s alternatives to institutional care started to be considered in legislation. The responsibility for community services lay with local government rather than central government and so little was done about setting up community alternatives until the mid-1960s, when a series of scandals in institutions revealed ill treatment and squalid conditions. In response to this, the government White Paper “Better Services for the Mentally Handicapped” was published in 1971 and encouraged the development of community care for people with mild and moderate intellectual disabilities within England and Wales. The other political influence at this time was a public lobby for the abandonment of hospital care by the Campaign for the Mentally Handicapped. In the early part of the 1970s, most new developments in the community were of large (20-25 person) units, including some for people with severe and profound intellectual disabilities (Erickson and Mansell, 1996). By the middle of the decade, however, there was an increasing pressure for housing-based services for everyone, and the first examples of supported housing for people with severe or profound intellectual disabilities appeared. By the beginning of the 1980s, another official committee (the Committee of Enquiry into Mental handicap Nursing and Care) recommended housing-based services as the main model of care. The recent White Paper (Department of Health, 2001) “Valuing People: a new strategy for learning disability in the 21st Century” lays open a “new vision” incorporating four key principles: Rights, Independence, Choice and Inclusion. Especially the experiment in Wales- The All Wales Strategy- in the 1980s can be seen as a significant example. As achievements of the AWS can be seen the almost completion of deinstitutionalization, the development of supported housing in the community, the expansion of family respite and domiciliary support. Evidence and experience suggests that this has led to improvement of quality of life for those concerned (Felce et al., 1998). From these experiments and the associated scientific research, one saw ideology and scientific proof run parallel more and more.
De Kock, Saxby, Thomas and Felce (1988) examined in two studies the frequency of community and family contacts of 10 adults with severe and profound intellectual disabilities living in small, community-based homes, first with their previous institutional experience and second in comparison with adults with similar handicaps living in larger community units. Adults in the small homes used community amenities significantly more than they did when in institutions and also significantly more than residents of larger community units. They experienced greater family contact than when they lived in more distant institutions, but not significantly more than residents of larger community units which also served local areas. Within the small homes, with people who were newly admitted from their family homes there was a significantly greater family involvement than with those transferred from institutions. Over the years many comparisons were made between community living and institutional care and between different models of community care, with in general as result that every model of community care offers better quality of care / quality of life than institutional care (Emerson et al., 2001). According to Emerson and Hatton (1996) it is, in general, apparent that the move from institutions to smaller, community-based services has been associated with gains in the areas of user engagement in everyday activities, participation in community based activities, personal growth and reductions in observed (probably stereotypic) challenging behaviour. It is also apparent, however, that these are far from inevitable consequences of deinstitutionalization and that significant variation exists in the quality of community-based provision.
Emerson et al. (2001) compared 63 adults in supported living residences, 55 adults in small group homes (1 to 3 co-residents), and 152 adults in large group homes (4 to 6 co-residents). Results indicated that compared with participants living in small group homes, those in supported living residences had greater choice, participated more in community-based activities, experienced fewer scheduled activities, were more likely to have had their home vandalized and were considered at greater risk of exploitation; compared with participants living in large group homes, those in small group homes had larger social networks, more people in their social networks who were not staff, not family, and did not have an intellectual disability. These residents were considered at less risk of abuse. There were no statistically significant differences in service costs once these had been adjusted to take account of participant characteristics.

Norway

Whereas the literature I found on deinstitutionalization in the United States and Britain in general contains more studies on quantitative research, the literature I found on Norway and Sweden has, in general, a more ideologic coloring.
In Norway, nearly all institutions for people with intellectual disabilities have been closed (Tossebro, 1999). Towards the end of the 1960s a period of institutional improvement began, concentrating on developing the services within the institutions. This period was characterized by an ambition to reduce the size of the institutions, introducing a greater degree of decentralization, making the wards more home-like and developing their educational and occupational facilities. The beginning of the 1990s has seen the start of a period of closure, furthered by the law, which states that special county services for persons with intellectual disabilities should be discontinued from 1992. The Norwegian Parliament in 1988 enacted an action plan for institutional closure, to be implemented from 1991 to 1996. This reform was not just about closing institutions, however, as integration, normalisation and decentralisation were equally important components. New services were supposed to be set up in the local communities, with institutional people relocated to their original municipalities. Tossebro (1996) found that in Norway there was among parents an extensive scepticism about the proposed closure, as there was in North America. He explains this from two factors: parents are uncertain about what the alternative will be and doubt the possibilities of the local authorities; secondly it seems that the parents were satisfied about the improvements of the institutions and saw further as risky. However, when there would be more clarity, the attitude would convert in favour of the deinstitutionalization, Tossebro claims. The 1988 action plan was seen as a pervasive reform, and the changes in the early 1990s were substantial with regard to housing conditions. The new typical accommodation became houses for two to four residents, with each person having an apartment of his or her own. The apartments comprise a sitting room, bedroom, kitchen and bathroom, which for a single person household means 50-55 square meters in area. The new type of housing had a positive impact on interaction, in two aspects (Tossebro, 1999). First, families visit their relatives with intellectual disabilities more frequently, and they say this is because it feels easier and more private. Second, the possibility of withdrawing from interaction with other residents has been easier since the relocation, and this has led to a substantial decrease in the number of people who, according to staff, have ‘problems with their fellow residents’ (a fall from 65% to 26%).

Sweden

The change in Sweden from institutional to community services, provided through housing, employment and a life in the community, has its roots in the welfare society as it was established during the mid-1940s (Ericsson, 1996). More modern social services had to be developed if the idea of a welfare society for the public was to be realized. The creation of these services gave rise to new means of providing support to people with handicaps. Parallel to institutional services, society could use modern social services and thereby had two ways of channelling its support to people with handicaps. The development of community services and the move away from institutional care has primarily been concerned with children and young people, and people with mild intellectual disability. These developments, however, affected adults with an extensive need for support much later (Ericsson & Mansell, 1996). The last three decades in Sweden have been a period during which residential institutions have been dissolved and community based services have been developed. All residential institutions have been closed and there came a shift of responsibility from a regional county organization with special services to local municipality welfare services. Live of persons have changed dramatically (Ericsson, 2003). Tuvesson and Ericsson (1996) studied the relatives’ views about institutional closure. Whereas 28% had been positive before the onset of the move, 78% were positive afterwards. Therefore, there is a group who have changed their point of view after being able to see the alternatives being offered and experience the new life that has been made available to their relative. But there is also a group who, in spite of the new services that have been developed, are not entirely satisfied with what is being provided. They are a small group but they are not content even if the material and formal conditions are of a high standard. When they view the alternatives they see other qualities as important in order to regard the services as suitable for their relative. It is therefore not always enough that the new forms of service created meet the formal and material demands and requirements, it is also important to have the assurance that these criteria are also considered important by others, in particular by the family.

Finland

In Finland the dissolution of institutions has also become a reality as from 1977 government has supported the shift towards community services, breaking a trend which had existed since the 1940s and which has led to an increased number of places in institutions. This trend has changed and institutional closure has begun. (Ericsson & Mansell, 1996).

Conclusions

Summarizing, on the basis of the above the following can be stated concerning experiences with deinstitutionalization in other countries:

Concerning the onsets of deinstitutionalization in other countries, there is a multitude of factors that play a part, varying from the parent-movement, scandals in press, to legislation and the role of research:

References

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