Julie Beadle-Brown

Outcomes in Different Residential Settings for People with Intellectual Disability: A Systematic Review.

Large-scale reviews of research in deinstitutionalization and community living were last conducted about 10 years ago. Here we surveyed research from 1997 to 2007. Articles were included if the researchers based the study on original research, provided information on the participants and methodology, compared residential arrangements for adults with intellectual disability, and were published in English-language peer-reviewed journals. Sixty-eight articles were found. In 7 of 10 domains, the majority of studies show that community-based services are superior to congregate arrangements. These studies provide more evidence of the benefits of deinstitutionalization and community living and continue to indicate variability in results, suggesting that factors other than the basic model of care are important in determining outcomes.

‘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.

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.

Changes in Social Impairment for People with Intellectual Disabilities: A Follow-up of the Camberwell Cohort.

The skills and social impairments of a total population of children with severe intellectual disabilities and/or autism from Camberwell, South London (Wing and Gould, 1978 and 1979), were assessed using the Handicaps, Behaviours and Skills schedule, and they were reassessed when they were adolescents and young adults (Shah, 1986). Changes in social impairment over time are presented here. As Shah (1986) had found with a smaller sample, social impairment remained relatively stable over time: on a simple “socially impaired” versus “sociable” dichotomous grouping, 93% did not change social group. Within the socially impaired group, there was a significant increase in impairment over time (i.e., people who were passive at Time 1, were aloof at Time 2). Implications of these results and predictions for a further follow-up study are discussed.

Uncovering Dimensions of Culture in Underperforming Group Homes for People with Severe Intellectual Disability

Culture recurs as an important but under-investigated variable associated with resident outcomes in supported accommodation for people with intellectual disability. This study aimed to conceptualize the potential dimensions of culture in all group homes and describe the culture in underperforming group homes. A secondary analysis, using an inductive interpretative approach, was undertaken of a large qualitative data set from a study that had used ethnographic and action research methods to explore the quality of life outcomes for residents in 5 small group homes. Five categories were developed: misalignment of power-holder values with organizations espoused values, otherness, doing for not with, staff centered, and resistance. Differences from institutional culture are discussed, and the potential of the findings as a starting point to consider culture in high performing group homes and develop a quantitative measure of culture.

Person-Centred Active Support – Increasing Choice, Promoting Independence and Reducing Challenging Behaviour

BACKGROUND Previous research has found that active support is effective at increasing levels of participation in activities and supporting a good quality of life for people with intellectual disabilities. However, there has been little research on the effect of active support on other outcome measures. METHODS This study uses observational methodology, combined with staff-rated measures, to explore the impact of the implementation of person-centred active support on the lives of 30 people with severe and profound intellectual disabilities living in small group homes. RESULTS Analysis indicated that significant increases in both the amount of assistance people received and the quality of that assistance were accompanied by significant increases in engagement, participation, choice-making opportunities and a significant reduction in challenging behaviour and in particular, self-stimulatory behaviour. CONCLUSIONS The paper discusses the implications of the findings for both practice and for further research.

Implementation of active support in Victoria, Australia: An exploratory study

Abstract Background Active support is an effective intervention to support engagement of residents with intellectual disability in group homes. This survey explored resident characteristics of the people supported by organisations implementing active support, the provision of active support, its procedures and systems, and resident engagement in meaningful activity and relationships. Method Information was collected through questionnaires and direct observation of 33 group homes from 6 organisations in Victoria, Australia, with a 5–10-year history of implementing active support. Results Residents with lower support needs were engaged with little staff contact or assistance. Use of active support systems and structures was mixed. Only one organisation consistently provided good active support. Conclusions Administrative systems and structures are not sufficient to change staff interaction and thus resident experience. Shared supported accommodation services may represent an inefficient use of resources for more able residents, as staff resources are not maximised to support for resident engagement.

Adult Protection Incidence of Referrals, Nature and Risk Factors in Two English Local Authorities

• Summary: This study focused on the incidence of adult protection referrals, the people involved as victims, perpetrators and referrers and the type of abuse in two local authorities in the south-east of England. • Findings: The number of referrals increased over time; those for older people stabilized but those for younger adults were still rising. There was a clear association between location or setting, perpetrator and type of abuse. A referral about someone living in a care home was more likely to identify abuse by multiple staff and institutional abuse or neglect, especially if the individual was an older person with mental health problems. People with learning disabilities were more likely to experience sexual abuse, mainly from other service users or members of their family. Those living in a private home with others, primarily relatives, tended to be at risk of financial, physical or psychological abuse. Older people living alone were particularly vulnerable to financial abuse by family members or, less frequently, home care workers. • Applications : This study suggests that well-developed adult protection procedures identify many more cases than previously estimated. Further research is needed to explain the low level of referrals from mental health services and variation between territories.

Elicited Imitation in Children and Adults with Autism: Is There a Deficit?.

Rogers and Pennington (1991) proposed that an early deficit in imitation, together with a cascade of developmental disorders in emotion sharing and theory of mind, could be important in understanding autism, but the research on deficits in imitation is not conclusive. Using a Do‐As‐I‐Do procedure, the present study tested the existence of a deficit in elicited imitation in a group of individuals with autism aged from 4 to 34 years and compared their performance to that of typically developing children and to children with mild to moderate intellectual disabilities. On a large battery of tasks, the majority of children and adults with autism had few problems relative to controls, although certain actions did seem more difficult, especially for the youngest children. Taking into consideration the reasonably small sample sizes, which advise cautious interpretation, implications for both theory and practice are discussed.