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 Editors’ Note Mansell and Ericsson Foreword Bradley 1 Introduction: towards Ericsson and Mansell deinstitutionalisation Closing institutions 2 Closing Laconia Shumway 3 Closing institutions in New York State Castellani 4 Issues in community services in Britain Mansell 5 Deinstitutionalisation in the Norwegian Tossebro welfare state Models of community services 6 Housing for the person with intelectual Ericsson handicap 7 Supported living policies and programs Allard in the USA 8 Quality of support for ordinary living Felce Effects of deinstitutionalisation on service users 9 Immediate psychological effects of Saloviita deinstitutionalisation 10 Results of deinstitutionalisation in Conroy Connecticut 11 Impact of deinstitutionalisation on Emerson and Hatton service users in UK 12 The transition to community services in Sandvin Norway Effects of deinstitutionalisation on families of service users 13 Relatives’ opinion about institutional Tuvesson and Ericsson closure 14 Family attitudes to deinstitutionalisation Tossebro in Norway 15 From complaining to campaigning Brown, Orlowska and Mansell 16 Conclusion: integrating diverse Mansell and Ericsson experience References Figure Captions List of contributors Index 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 <<Foreword>> 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 phase- downs 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>>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. <<A>>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.