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Deinstitutionalisation and Community Living Intellectual disability services in Scandinavia, Britain and the USA

Edited by Jim Mansell University of Kent at Canterbury and Kent Ericsson University of Uppsala

London: Chapman and Hall

Deinstitutionalisation and Community Living Intellectual Disability Services in Scandinavia, Britain and the USA Jim Mansell and Kent Ericsson (Eds) Contents Chapter Author Filename

1

Editors’ Note Foreword Introduction: towards deinstitutionalisation

Closing institutions 2 Closing Laconia 3 Closing institutions in New York State 4 Issues in community services in Britain 5 Deinstitutionalisation in the Norwegian welfare state Models of community services 6 Housing for the person with intellectual handicap 7 Supported living policies and programs in the USA 8 Quality of support for ordinary living Effects of deinstitutionalisation on service users 9 Immediate psychological effects of deinstitutionalisation 10 Results of deinstitutionalisation in Connecticut 11 Impact of deinstitutionalisation on service users in UK 12 The transition to community services in Norway Effects of deinstitutionalisation on families of service users 13 Relatives’ opinion about institutional closure 14 Family attitudes to deinstitutionalisation in Norway 15 From complaining to campaigning 16 Conclusion: integrating diverse experience References Figure Captions List of contributors Index

Mansell and Ericsson Bradley Ericsson and Mansell

Shumway Castellani Mansell Tossebro

Ericsson Allard Felce

Saloviita Conroy Emerson and Hatton Sandvin

Tuvesson and Ericsson Tossebro Brown, Orlowska and Mansell Mansell and Ericsson

Deinstitutionalisation and Community Living Intellectual disability services in Scandinavia, Britain and the USA Contributors Mary Ann Allard PhD Administrator Governor’s Commission on Mental Retardation Saltonstall Building Room 1103A Boston MA 02202 USA Valerie Bradley President Human Services Research Institute 2336 Massachusetts Avenue Cambridge, MA 02140 USA Hilary Brown PhD Senior Lecturer in Learning Disability Tizard Centre Beverley Farm University of Kent at Canterbury Canterbury Kent, CT2 7LZ UK Paul Castellani PhD Director of Program Research New York State Office of Mental Retardation and Developmental Disabilities 44 Holland Avenue Albany, New York, 12229 USA James Conroy PhD Conroy Output Analysts, Inc 113 Sibley Avenue Ardmore, PA 19003 USA Eric Emerson Deputy Director Hester Adrian Research Centre University of Manchester Manchester M13 9PL UK

Kent Ericsson Research Psychologist Centre for Handicap Research Uppsala University Box 170047 S-750 17 Uppsala Sweden Professor David Felce PhD Director Welsh Centre for Learning Disabilities Meridian Court North Road Cardiff CF4 3BL Wales UK Chris Hatton Research Fellow Hester Adrian Research Centre University of Manchester Manchester M13 9PL UK Professor Jim Mansell Director Tizard Centre Beverley Farm University of Kent at Canterbury Canterbury Kent, CT2 7LZ UK Danuta Orlowska Lecturer in Learning Disability Tizard Centre Beverley Farm University of Kent at Canterbury Canterbury Kent, CT2 7LZ UK Timo Saloviita University of Jyväskylä Department of Special Education PO Box 35 SF-40351 Jyväskylä Finland

Johans Sandvin Nordlandsforskning Mörkved PO Box 6003 N-8016 Bodö Norway Donald Shumway Director New Hampshire Division of Mental Health and Developmental Services State Office Park South 105 Pleasant Street, Concord New Hampshire 03301 USA Barbro Tuvesson Social Worker Ekängsvägen 37 541 41 Skövde Sweden Jan Tøssebro Department of Sociology University of Trondheim N-7055 Dragvoll Norway

Valerie Bradley Vice-Chair and Presiding Officer of the US President's Committee on Mental Retardation

The true consequences of major changes in any sphere of public policy are revealed in a frustratingly slow fashion. Even when dramatic shifts are accompanied by research on potential outcomes, there is no way of simulating the results of significant structural change, given the vagaries of execution and the inevitable slippage between aspirations and application. Ascertaining whether a particular course of action lives up to its promise is very difficult in the din and confusion of implementation. The shift in public policy that spurred the movement to close institutions and to place people with intellectual disabilities in homes in local communities is no exception. While the reasons for deinstitutionalisation are complex and vary across national political contexts, one common factor is the embrace by advocates of the concept of normalisation and the rejection of segregation of people with intellectual disabilities from the rest of society. Institutions became both the symbol and the instrument of separation and the consequent stigmatisation of people with intellectual disabilities. Reducing populations and ultimately closing institutions was the means by which residents could obtain the benefits accruing to all of living and participating in normal communities. The challenges presented by this goal were highly complex, in that the task entailed dismantling large bureaucratic structures on the one hand, and the creation of a new system of community resources on the other. The ‘first generation’ of research in deinstitutionalisation focused on the process of dismantling and charting the relocation outcomes for the people who were moved. Such studies were largely designed to answer the question: “Are people better off in the community?” Studies also explored the political and administrative issues surrounding the closure of institutions including the impact of court intervention, the resistance of unionised institutional employees and the reactions of families to the placement of their relatives. This research proved useful in reassuring policy makers that institutional closures and phasedowns were not jeopardising, but rather enhancing the well-being of those relocated, and pointed out important lessons for state and local administrators saddled with the task of hastening the decline of large public facilities. While this initial wave of research was important, its utility will continue to decline as more and more countries phase down large institutions over the next decade. In the United States, the institutional population has declined from a peak of 194,659 in 1967 (Lakin et al, 1989) to only about 75,000 in June 30, 1992 (Gettings, 1992), and several states including Rhode Island, Vermont and New Hampshire no longer maintain large public institutions for people with intellectual disabilities. In other words, knowing how to close institutions for people with intellectual disabilities will eventually be equivalent to knowing how to treat polio - - the job will ultimately be completed. Obviously, the decline in institutional populations is taking place at different rates in different countries given resource and political differences. Countries such as those in Central Europe, where institutional populations are still significant, will continue to benefit from experience elsewhere. For the future, however, the more interesting questions will be those that focus on the second phase of reform - - the development of a viable, stable, and

high quality system of community resources. The question in this phase is not simply whether people are better off than they were in the community, but whether their lives provide the same opportunities for socialisation and inclusion in their communities as for the rest of the population, with all the implications for individually-tailored support that that entails. The analyses presented in this volume represent, in most instances, ‘second generation’ research on deinstitutionalisation - - that is, research that digs beneath the initial studies of closure and focuses on the variables within community programs and in administrative support structures that are predictive of better outcomes - - how do staff attitudes and their interaction with people with intellectual disabilities affect the progress of community residents? How can families be collaborators in planning and developing resources for their family members? What is the impact of increasing decentralisation of authority and responsibility and the decline of specialised services to people with intellectual disabilities in favour of an integrated, ‘dedifferentiated’ local system of social services? The answers to these questions are important to the expansion of reform and to the design and enhancement of community systems of support. Many of the authors in this book speak to the successes of the movement of people out of institutions including positive changes in the attitudes of families, positive changes in the individuals who left, and the expansion of community resources. However, it is clearly too early to declare victory - - at least in the fight to establish high quality community services - given some of the warning flags also raised by the findings that follow. As the headlines of success in early skirmishes to downsize institutions has subsided, more sobering and equally complex issues have arisen that may threaten continued progress and that should cause a reassessment of the limited goal of dismantling and relocation. Some of these issues include structural and training issues surrounding the conduct of community services, changes in the political and economic climate, potential loss of entitlements and rights in a decentralised generic social services system, and a reduction of those welfare state benefits that make it possible to maintain people in communities and to keep them out of institutions in the first place. Looking beyond successful relocation, we are now able to discern differences in the quality of the community programs established over the past two decades. From the vantage point of the 1990s, we can see that many community programs, while providing better care and physical surroundings for people with intellectual disabilities, did not provide a social and psychological that was materially different than that in the remote, segregated institutions that preceded them. This closer examination of the content rather than the form of community services has generated an interest in the quality of life of individual residents, as reflected in their participation in communities and the extent to which they are participants in the choices that affect their lives. A new paradigm of community services The recognition that deinstitutionalisation should be more than just ‘a change of address’ coincides with the emergence of a ‘new paradigm’ or set of assumptions regarding the conduct of services to people with intellectual disabilities. This new set of assumptions acknowledges that people with intellectual disabilities are capable of making choices about their own lives, respects their right to do so, and focuses on individualised supports and empowerment. Bradley and Knoll (1995) identify four major attributes of this new paradigm,

primacy of community, emphasis on relationships, person-centred supports, and choice and control. These revised priorities have a profound impact on how services are provided: „The primacy of the community - - The new paradigm rests on the fundamental belief that people with disabilities can and should live in communities as full participating members. The role of service providers is to identify and remove barriers to full community participation. „Emphasis on relationships - - People with disabilities have the same needs for social connectedness as do any other persons living in communities. A fundamental task of service providers is to ensure that people make social connections and become fully integrated into the life of the community. These social relationships make it possible for people with disabilities to make use of natural supports in their communities. „Person centred supports - - This view of services for people with disabilities eschews the notion of fitting people into available program ‘slots’. Rather supports must be designed to respond to the unique situation of each individual in his or her community. People with disabilities should live in homes, not in programs and they should work in us jobs, not in workshops. Program planning must include tile full array of family members, friends, service providers, advocates and, most importantly, the consumer. „Choice and control - - The new paradigm rejects the notion that ‘the professionals know best’. Instead, it recognises the right of consumers to make choices about where and with whom they live, how they spend their time and how they want their supports configured. The task for community support workers is to assist consumers in making informed choices and to ensure that meaningful choices are available.

Implications for Staff A focus on quality of life and community membership requires a reconfiguration of staffing patterns and staff training. Services are increasingly being delivered in homes, workplaces, schools and communities, and are therefore more and more decentralised. The nature of the work is also changing. The role of direct care staff in traditional organisations is essentially to be the arms and legs of the agency, carrying out orders rather than collaborating to solve problems. Though direct service personnel are often asked to work in highly decentralised and isolated circumstances, they are rarely given the autonomy to shape their work life. In more individualised settings, they will likely be called on to make independent decisions, to work with people with intellectual disabilities and their families to fashion individual and idiosyncratic supports, and to work with generic agencies and natural supports in unique and community specific configurations. Dramatic increases in the numbers and types of community based support settings have mixed implications for staff: greater autonomy and responsibility may increase commitment and job satisfaction but make recruitment, retention and training more difficult (Larson, Hewitt and Lakin, 1994). Multiple settings also increase the probability of poor fit between the expectations of new recruits and the job requirements resulting in higher turnover (Ebenstein and Gooler, 1993). Scheduling and arranging for training is more difficult across multiple settings (Langer, Choisser and Agosta, 1987).

Mittler (in Hogg and Mittler, 1987), in commenting on staff development needs in Great Britain, made the following observation: “There is a sense in which we are all unqualified and ill prepared even to meet today's needs. The speed and scale of change, even within the last ten years, the flood of new information on changing practice, are so great that much of what is taught to new staff is becoming dated even before they complete their training. How much greater, then, is the challenge of helping existing staff to modify their practice and attitudes in the light of the changes that have taken place since they started working in this field? How, too, do we create an awareness of the needs of people with disabilities in the countless numbers of staff working in ordinary services?” (Hogg and Mittler, 1987, p. 31) This changing vision of how services should be delivered to people with intellectual disabilities has major implications for the types of workers required and the training these workers need. As Knoll and Racino (in Bradley, Ashbaugh and Blaney, 1994) note: “... the basic values of personal choice and control, individual quality of life, valued roles, and full community participation for people with developmental disabilities does indeed require the fundamental transformation of words and practice inherent in the support paradigm. However, this promise will be lost if the field does not systematically reeducate itself and develop new workers who are both imbued in this new way of thinking and have the skills needed to undertake the far reaching changes that tie ahead.” (Bradley, Ashbaugh and Blaney, 1994, p. 5) Community staff will need to be taught skills that are qualitatively different from those geared to more structured settings. Some of these qualities have been identified by the Family Empowerment Project at Cornell University for people engaged in generic family support. Ability and commitment to identifying strengths in people and groups; Genuine respect for diverse perspectives and life styles; A capacity to listen and reflect; An ability to subordinate one's own ego (to put one's self aside in the interest of the group); Skill and creativity in helping people become more aware and confident of their own abilities; Appreciation of when to step back and the ability to help the individual or group assume decision-making and action; Ability to analyse power relationships and help others to do so; Knowledge about how to gain access to information; Ability to reflect on and criticise ongoing process, including one's own role in those processes.

(Cochran, 1990)

Political and economic implications A further challenge, noted by many of the authors in this volume, is the rapidly changing political and economic climate in the United States and Western Europe. We are reminded that the era of deinstitutionalisation and community expansion occurred during a period of expanding resources and optimism. The motivation for reform was primarily to further ideological ends such as normalisation, and to implement what was determined to be a rational policy (eg based on cost comparisons, research findings, quality issues, etc). However, the current landscape is dramatically altered. Instead of expanding resources the challenge today is to do more with less. Instead of an expanding welfare state, national governments are developing plans to circumscribe benefits and services. Instead of centralised authority and vision, the catch phrase is devolution, local control and block grants. Thus, the next wave of reform - - building community capacity - - is occurring in a period of constriction and political retrenchment. Progressive ideology has shifted to fiscal conservatism and the motives that guided deinstitutionalisation may be turned to a more cynical attempt to shift responsibility and avoid more expensive specialised services. The lowered expectations generated by the emerging political mood has significant ramifications for both the quality of community services as well as the availability of services and supports to those at home with their families. Growth in the numbers of people with intellectual disabilities receiving publicly-supported services in the United States has been reasonably slow, increasing by an average of only 1/2% per year since 1967 (Gettings, 1992). Thus, the beneficiaries of the rapid expansion of services in the 1970s and 1980s were those individuals who were moved out of institutions and the aspirations of thousands of people with intellectual disabilities who had never been institutionalised on hold. In a 1987 publication by the Association for Retarded Citizens of the United States, the number of individuals with mental retardation on waiting lists for community services nationwide was 132,967. By 1991, the University of Minnesota estimated that this figure had grown to 196,000. Given the continuing revenue shortfalls in many states around the United States, it is reasonable to assume that this is now a conservative figure. Further, it is becoming clear that the political commitment needed to sustain the continued expansion of the highly specialised and increasingly expensive models of residential and day services developed during the 1970s and early 1980s cannot be relied upon. Gettings (1992) has estimated that to meet the residential demand in the United States, states would have to increase their residential budgets by a full 20%. In reflecting on the fiscal realities at the federal and state level, Gettings, makes the following observation: “The resources are simply not available - - and not likely to be available in the foreseeable future - - to sustain the growth rate in spending which the field experienced during the past decade. Further expansions and improvements in services to people with developmental disabilities, therefore will be largely dependent on the capacity of advocates, providers and state officials to join hands in charting a new course that emphasises more efficient utilisation of available human and fiscal resources.” (Gettings, 1992, p. 16)

The fiscal and political context also poses challenges to the continued quality of those community programs that exist. To the extent that quality is compromised, the covenant that we have made with families regarding the safety and well-being of their family members in the community may be jeopardised. A lack of trust on the part of families coupled with the perceived ‘economies of scale’ inherent in congregate settings could result in an erosion of the momentum to create individualised supports for people with intellectual disabilities. Continued collaboration with family members and people with intellectual disabilities as well as professionals will be needed to maintain the gains made in the past two decades and to expand services and supports to those individuals who have never been institutionalised.

Changes in the Welfare State Another important issue described in this volume is the overlay of decentralisation initiatives and deinstitutionalisation. In some countries, the move to decentralise, though occurring contemporaneously, was not directly linked to deinstitutionalisation. In Norway, the two initiatives were expressly linked. Decentralisation and devolution of authority to counties and municipalities in much of Western Europe has resulted in the integration of services to people with intellectual disabilities into generic social services programs. Decentralisation is also taking place in the United States and while most services to people with intellectual disabilities remain separate, consolidation of health related services under the rubric of ‘managed care’ may also result in the loss of a categorical identity for such services. On one level, removing the ‘special’ character of services to people with intellectual disabilities can be seen as the next step toward normalisation. On the other hand, such dedifferentiation, as Sandvin has characterised it, can also result in a loss of special entitlements and the specialised expertise necessary to respond to the complex challenges of people with severe and profound intellectual disabilities. Decentralisation and dedifferentiation also mean that decisions about resources must be made among competing local priorities including those of the elderly, children, people with physical handicaps, drug abusers, as well as people with intellectual disabilities. This means that conventional advocacy organisations that have by and large functioned at the national level will have to organise locally and will have to build thoughtful alliances with other constituencies. Anders Gustavsson, from the Stockholm College of Health and Caring Sciences, also addressed some of these tensions in a speech at the 11th Annual Young Adult Institute Conference in New York City. In commenting on the decentralisation phenomenon, Gustavsson noted a potentially ironic consequence: “... there might be a growing risk that persons with severe handicaps in Sweden, as those who can't handle the service system effectively, in the future may not be in a position to benefit from the services provided. The paradoxical situation may occur, where the quality of life improves considerably for the competent and strong persons, while the remainder get worse conditions than before as a result of the very same development. This brings us back to the question of quality and equality of life, which may be one of the most important future issues in integrated society.” (Anders Gustavsson, 1990, p. 7)

Impact of reduced entitlements A final issue that should be of increasing concern as we attempt to solidify gains made in community services and take the next step to enhance and expand community support is the possibility of a diminishing safety net for people with intellectual disabilities. In the United States, there are currently discussions at the federal level that may result in a significant decrease in pensions for families who have children with intellectual disabilities, in vocational services, in federally supported health care, and in maternal and child health services. These same conversations are also taking place in many other countries. Clearly, by diminishing income and other financial supports, it will be difficult for families to maintain family members with intellectual disabilities in the community and to support adults in their own homes and on the job. Ironically, the very entitlements that made it possible for people to find alternatives to institutionalisation may be diminished to a level that pressure for institutionalisation will once again increase - - not because people prefer this option, but because their desperation may lead them to this Hobson's choice.

Conclusion The chapters that follow are testimony to the massive strides that have been made in the reform of services to people with intellectual disabilities through the phasing down of institutions and the creation of community alternatives. No-one who has been involved in this process can be in any doubt that it is possible, given imagination, skills and resources, to greatly improve the lives of people with intellectual disabilities as members of the societies in which they live. In by far the majority of cases, the dismantling of institutions has resulted in lives for former residents that are better than those they lived in large public facilities. This success rests not upon a simplistic or naive view of what needs to be done, but upon hardwon understanding of the problems and pitfalls that have to be faced to do the job properly. It is recognised, though, that the success of the replacement of institutions and the development of community capacity is still elusive. It is contingent on our ability to recruit and train support staff, to maximise public as well as family and community supports, to ensure adequate advocacy for people with intellectual disabilities in decentralised settings, and to persuade local and national policy makers that any reduction of financial supports is a false economy that may ultimately result in reinstitutionalisation and resegregation. Safeguarding the future therefore means, for all of us, not only finding better ways of meeting the needs and aspirations of people with intellectual disabilities, but also engaging with the wider political debate about equality of opportunity and civil rights.

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ssed secondary outcomes ~ssexperienced by staff or et al., 1993). A number of ice processes such as the to users (e.g. Orlowska et Iewson and Walker, 1992)

1990; Rawlings, 1985). The definition of engagement has been used with sufficient consistency in Britain to allow for the comparison of results across, as well as within, studies. Figure 11.3 presents such a comparison for all studies from which data relating to overall levels of engagement was available. Each bar represents data pertaining to either the study as a whole or, where available, data pertaining to each distinct residential unit evaluated. Figure 11.4 presents the average levels of engagement (weighted for numbers of participants per study) observed in each type of service model. It should be noted that the data in Figures 11.3 and 11.4 are based on studies rather than publications. This is of some importance given the occasional occurrence of repeated presentations of the same data across multiple publications.

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As can be seen, while overall levels of engagement were higher in community-based staffed houses (weighted mean: 47.7%) than either community-based hostels and hospital-based units (24.7%) or NHS mental handicap hospitals (13.7%) significant variation occurred within each type of service. Thus, for example, the range of engagement data for each service model was 2%-23% for hospitals, 6%-54% for hostels/units and 8%-74% for community-based staffed houses. A one-way analysis of vari-

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The impact of deinstitutionalization

177

not by the presence of additional staff resources, but by the implementation of a behaviourally-orientated model of providing 'whole-environment' or 'active' support (Felce, 1988, 1991; MansellI995). It is unlikely, however, that differences in the competencies of users can account alone for the reported differences between types of service provision as similar patterns of results are obtained from both longitudinal and comparison-group based studies. Figure 11.5 presents a summary of within-study differences for those 15 longitudinal or 11 comparison 14 _ _

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user levels of participation in community-based activities. Most commonly, such studies assessed the use of community-based facilities (e.g. banks, shops, cinemas) either retrospectively (e.g. Dockrell et al., 1993) or prospectively using some form of carer-completed diary (e.g., Fleming and Stenfert Kroese, 1990). While variations in procedures do not allow

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for valid comparisons between studies, within-study comparisons reveal a pattern of results similar to those reported above (Figure 11.6). Thus, while the majority of comparisons (66%) reported a significantly increased use of community-based facilities in less restrictive environments, a minority of studies (31%), including 36% of comparisons between hospitals and community-based staffed housing reported no change. One study (Hemming, Lavender and Pill, 1981) reported significantly less use of community-based facilities in staffed houses on a hospital site when compared with mental handicap hospital wards. PERSONAL GROWTH Twenty-four

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The impact of deinstitutionalization ictivities. Most com{-based facilities (e.g. ockrell et al., 1993) or diary (e.g., Fleming :edures do not allow

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tionship between models of service provision and changes in the extent and nature of challenging behaviours shown by service users. The majority of studies (involving 14 comparisons) evaluated change in challenging behaviour through information solicited from key informants (e.g. Murphy and Clare, 1991). A minority of studies (involving 11 separate comparisons) employed direct observational methods to measure changes in the amount of time users exhibited challenging behaviours (e.g. Emerson, Cooper, Hatton et al., 1993).The results of these approaches are summarized in Figures 11.8 and 11.9.

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As can be seen, the method used to assess challenging behaviour would appear to exert a strong influence over the results obtained. In general, use of key informant interviews tended to reveal a pattern of no change (64% of comparisons), although a significant minority (43%) of comparisons between hospitals and staffed housing noted a significant increase in challenging behaviours on move to smaller community-based services. In contrast, those studies which employed observational methods report an overall pattern of reduced challenging behaviour in community-based services, although this was only the case for 43% of comparisons between hospital-based provision and small communitybased staffed housing. A number of factors may account for these discrepancies. Firstly, reprovision of hospital-based care in small-scale domestic housing projects has most commonly involved the appointment and training of new staff groups rather than the transfer of both staff and users. As such, any changes in staff reports across settings may reflect either changes in the behaviour of users or the attitudes and expectations of informants towards deviant behaviour. This may be particularly significant given the use of 'values-based' training to raise the expectations of, primarily inexperienced and unqualified, support staff in community-based-services (cf. Towell, 1988; Towell and Beardshaw, 1991).

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