Jim Mansell

Deinstitutionalisation and community living: Progress, problems and priorities

Abstract Background Deinstitutionalisation of services for people with intellectual disabilities has become a focus of disability policy in many countries. Research for the most part supports this strategy. However, outcomes are not uniformly better for everyone who moves to community living. This paper explores reasons for variability in service quality and highlights important lessons for countries starting to modernise services. Method The effects of deinstitutionalisation are summarised and emerging problems identified. The changing context of different welfare‐state models and paradigms in disability and public administration are outlined. Results The main changes which have impacted on the implementation of deinstitutionalisation include: the rise of market‐based approaches to service provision, arrangements for rationing services, the “de‐differentiation” of intellectual disability services, and the rise of a rights‐based model in disability policy. Conclusions The paper sets out priorities for the future development of community services. Success is likely to require a renewed focus on demonstrating improvement in the quality of life of people with intellectual disabilities and a change in the role of staff to provide more facilitative, enabling support of individuals, especially those with the most severe or complex disabilities.

‘It's pretty hard with our ones, they can't talk, the more able bodied can participate’: staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities

BACKGROUND The level of residents adaptive behaviour and staff facilitative practices are key sources of variation in outcomes for residents in community-based residential services. The higher the resident support needs the poorer their outcome. Although substantial investment has been made in values-based training for staff, their attitudes and the impact of these on practice is largely unexplored. METHOD AND FINDINGS The first study used ethnographic and action research methods to examine the daily lives of 25 residents with severe and profound intellectual disabilities (ID), who lived in five small group homes, and the attitudes of the staff supporting them. Thematic analysis of the data led to a proposition that although staff accept principles of inclusion, choice and participation for people with ID in general, they do not consider it feasible to apply these to the people with severe and profound ID to whom they provide support. The findings from a second study that used a group comparison design and administered a short questionnaire about staff attitudes to 144 direct-care staff and first-line managers working in disability services confirmed this hypothesis. CONCLUSIONS The study suggests more focused attention is needed to staff understanding the values embedded in current policies and their application to people with more severe disabilities.

Increasing purposeful activity of severely and profoundly mentally-handicapped adults☆

Abstract A time-series reversal design was used to evaluate the effect of a ‘room manager’ procedure on the level of purposeful activity of severely and profoundly mentally-handicapped people in a residential home. The room manager procedure consisted of systematic prompts to participate in recreational activity and social reinforcement contingent on engagement. Data were collected on group and individual client behaviour and two measures of staff performance were taken to assess whether the procedure was implemented consistently across subjects and in line with the experimental design. The results showed that, as well as a group of subjects who engaged at a higher level during the room manager condition, there were consistently ‘high-engaging’ and ‘low-engaging’ groups, reflecting in part the general level of ability of the subjects. However, data on the independent variables show that the the contingency of staff contact did not vary across conditions and it cannot therefore be assumed that these subjects would not respond to the intervention. Some limitations of the procedure as used are discussed, and areas where further work is needed are indicated.

Evaluation of alternative residential facilities for the severely mentally handicapped in Wessex: Client engagement☆

Systematic observational measures of the minute-to-minute behaviour of severely and profoundly mentally handicapped people of comparable levels of dependency were taken in two types of residential unit to establish the level of engagement in activity. Higher engagement levels were found among those clients living in Wessex locally-based hospital units compared with those living in villas of a traditional mental handicap hospital. Thus, concern that such small “domestic” units, sited in the community among the people they serve, would not be a feasible alternative to traditional campus-type hospitals appear to be unfounded. Moreover, the prediction that traditional practices, such as grouping clients by clinical or diagnostic criteria and grouping living units to provide peer “support” to staff and supposed better access to specialists, are essential to the maintenance of high quality residential care is not borne out by the evidence. More attention needs to be paid to the important variables of staff deployment and scheduling of activities in the maintenance of high levels of client engagement in activity.

Deinstitutionalisation and community living: position statement of the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities.

The gradual abandonment of large residential institutions1 and their replacement by small‐scale services to enable people to live well in the community has probably been the most significant policy development in intellectual disability in the post‐war period (Mansell and Ericsson, 1996). This process of ‘deinstitutionalisation’ is well advanced in Scandinavia, the United States of America, Canada, the United Kingdom, and Australasia. In these countries, the policy debate about whether to provide institutions or community services is largely resolved. The questions that remain are those of implementation and particularly of whether the kinds of supported accommodation that have been provided replicate institutional features and should themselves be reformed. For many other countries, the debate between institutional and community services has never been particularly important because most people with intellectual disabilities live with their families and services to support them are relatively undeveloped. In these countries, it should be possible to develop community‐based services directly, without going through a phase of institutional care. In a third group of countries, the dominant form of service provision remains institutional care and the question of whether and how to replace this remains a matter of debate. For example, many central and eastern European countries provide institutions of very poor quality and currently have proposals to renovate, upgrade and extend them using international funds instead of replacing them with services to support people in the community. The international legal framework sets out the right of disabled people to live in the community. The United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006), which came into force in May 2008, recognises this right through Article 19, which entails the provision of “a range of in‐home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” The Convention obliges states to develop community living that will replace institutional care through a process of ‘progressive realisation’. This requires states to take measures to the maximum of their available resources with a view to achieving progressively the full realisation of the rights involved. They must, therefore, move in the direction of realising the rights of disabled people but they are allowed to do so at a rate determined partly by the resources available to them. Good information is central to this process of reform and service development. People making decisions about the pace and scope of change, the kind of services needed and the organisation and management of those services are often faced with strongly‐held opinions from proponents of different service models. The purpose of this position statement by the Comparative Policy and Practice Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disability is to set out concisely the evidence comparing institutional to community‐based services and to draw out the main implications for policy‐makers.

Deinstitutionalization in intellectual disabilities.

Purpose of review The process of deinstitutionalization for intellectual disability services is at different stages across the world, varying from complete closure in Sweden to a vague hope in Taiwan. This review explores recent literature on deinstitutionalization and intellectual disabilities and focuses on papers published in academic journals mainly during 2006. Recent findings Work on deinstitutionalization continues to show that outcomes are better in the community than in institutional care but recent papers highlight that there is more to deinstitutionalization than just hospital closure. Just moving people out of institutions into community settings does not bring about automatic improvement in quality of life in terms of choice and inclusion as well as self-identity and access to effective healthcare and treatment. This is especially true for people with more severe intellectual disabilities as well as complex needs such as challenging behaviour. Some of the current research illustrates that even offenders with intellectual disability can be successfully supported in the community. Summary Recent research provides further examples and lessons on how community care can and should work, which it would be hoped will help those countries just starting the process of institutional closure to move more quickly to full deinstitutionalization.

Severe Learning Disabilities and Challenging Behaviours: Designing high quality services.

The size of the problem - H Qureshi Understanding challenging behaviour - G Murphy Conceptualizing service provision - E Emerson, J Mansell and P McGill Ordinary housing for people with severe learning disabilities and challenging behaviours - E Emerson, J Mansell, F Beasley and P McGill Vocational services - D Allen Intervention and support services - J McBrien Part III: Determinants of quality Introduction - P McGill, E Emerson and J Mansell Values and staff culture - E Emerson, P McGill and S Barrett Service organization and staff support - P McGill, S Toogood and C McCool Supporting local service placements - J Mansell, P McGill and H Hughes Disseminating good practice - J Mansell, E Emerson and P McGill Assessing costs and benefits - J Mansell and M Knapp Part IV: Implications for future services.

Active Support: A Critical Review and Commentary.

Abstract Background Active Support (AS) is an approach for promoting increased engagement in activities by people with intellectual disability (ID). Method We critically reviewed the available research on AS, and added a commentary to help guide future research and practice. Results Despite weaknesses in the research design of some studies, there is consistent evidence that AS results in increased engagement in activities. There is also some limited evidence of other beneficial outcomes. All published research to date has involved people with ID in community group homes with 24-hour staffing. Conclusion The established efficacy of AS for increasing engagement means that research attention can now be given to: (a) developing AS to enhance its positive impact on outcomes such as choice and relationships; (b) exploring the wider implementation of AS beyond community group homes and people with ID; and (c) examining the effectiveness of wide-scale implementation of AS, with careful attention to issues such as management, organisational and staffing factors, and cost.

Measuring the activity of severely and profoundly mentally-handicapped adults in ordinary housing

Earlier work on the quality of care in settings for severely and profoundly mentally-handicapped adults raised the question whether any useful purpose is served by promoting the extensive use of simple recreational materials to occupy people. Data were collected by direct observation on the activity of 6 adults living in a staffed house organized to promote engagement in household activities. Observations were taken over 5 weekdays from 07.00 to 10.00 and 15.00 to 23.00hr. The results showed that Ss spent between 22 and 67% of available time in purposeful activity. Between 27 and 65% of purposeful activity was engagement in domestic or housework tasks. Even the most handicapped people spent more time engaged in housework than in leisure and recreational tasks. The implications of these data are commented on and measurement issues which arise in ordinary housing as opposed to institutional settings are discussed.

Specialized group homes for persons with severe or profound mental retardation and serious problem behaviour in England.

Thirteen people with severe or profound mental retardation identified by their local service agencies as presenting the most serious problem behaviour were transferred from institutional care to specialized group homes. A multiple time-series design and direct observation were used to evaluate whether there was any change in their level of participation in meaningful activity; social interaction and problem behaviour were also observed. Participation increased significantly on transfer and included a wider range of activities. The majority of participants did not increase their major problem behaviour. The results support the view that individualised community-based placements can replace institutions for this group of clients.