Active Support is a proven model of care that enables and empowers people with intellectual disabilities to participate fully in all aspects of their lives. This evidence-based approach is particularly effective for working with people with more severe disabilities, and is of growing interest to those responsible for providing support and services. The authors provide a comprehensive overview of Active Support and how it can be used in practice, based on the theory and research underpinning the methods involved. They describe how to engage people with intellectual disabilities in meaningful activity as active participants, and look at the communication style needed to foster positive relationships between carers and the people they are supporting. Highlighting the main issues for those trying to put Active Support into practice, they explain what is needed on a day-to-day basis to support the implementation, improvement and maintenance of the approach, along with possible solutions for the difficulties they may encounter. Finally, they look at how to integrate Active Support with other person-centred approaches, drawing on examples from various organisations and individual case studies. The definitive text on Active Support, this book will be essential reading for anyone professionally concerned with the quality of life of people with intellectual disabilities, including psychologists, behaviour specialists, social workers, care managers, occupational therapists and inspectors and regulators of services, as well as families.

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.

Background: quality ratings of care homes are used by decision makers in the absence of direct information about outcomes. However, there is little evidence about the relationship between regulators' ratings of homes and residents' quality of life outcomes. Objectives: to capture social care-related quality of life (SCRQoL) outcomes for residents and investigate the relationship between outcomes and regulator quality ratings of homes. Methods: data were collected for 366 residents of 83 English care homes for older people inspected during 2008. Outcomes were measured using the Adult Social Care Outcomes Toolkit (ASCOT). Multivariate multilevel modelling was used to investigate the relationship between quality of life outcomes and star ratings of homes, controlling for resident and home characteristics. Results: care homes were delivering substantial gains in SCRQoL, but were more successful in delivering ‘basic’ (e.g. personal cleanliness) than higher-order domains (e.g. social participation). Outcomes were associated with quality ratings of residential homes but not of nursing homes. Conclusions: the approach to providing quality ratings by the regulator in England is currently under review. Future quality indicators need to demonstrate their relationship with quality of life outcomes if they are to be a reliable guide to commissioners and private individuals purchasing care.

Background: Studies of engagement in meaningful activity often focus on a short period during the afternoon. The question arises whether this produces different results from studies covering the whole day. Methods: Data collected for 18 individuals using a 20-s momentary time-sample from 08:00 to 19:00 over a number of days for each person were analysed. Duration of behaviours was compared when estimated from a 2-h period between 16:00 and 18:00 and the period 08:00-16:00 and 18:00-19:00. Results: No significant differences at P < 0.01 were found for engagement in meaningful activity, two-way interaction or 24 of the 26 behaviour codes used. Longer duration during the period 16:00-18:00 was found for personal care, which includes eating, and for neutral staff contact in institutions only. No differences were found for any code in housing. Conclusion Observation of activity during the period before and during the evening meal by momentary time-sampling can be used to estimate overall levels of engagement in meaningful activity, two-way interaction and total staff contact, together with other behaviours, with the exception of personal care and neutral contact from staff in institutional settings. Further research is needed to confirm this result.

This position statement was prepared through discussion and consultation with members of the CPP SIRG and approved at the IASSID Council meeting in Singapore, 26 June 2009.

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.

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 stabilised 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.

Background This review evaluated research on the quality and costs of dispersed community-based housing compared to clustered housing. Methods Searches yielded 19 papers based on 10 studies comparing dispersed housing with some kind of clustered housing (village communities, residential campuses or clusters of houses). The studies reported the experience of nearly 2500 people from four different countries. Results In five of eight quality of life domains there were no studies reporting benefits of clustered settings. Clustered settings had some advantages in interpersonal relations, emotional and physical well-being. However, in many cases the better results refer only to village communities and not to campus or clustered housing. Clustered housing was usually less expensive but this was due to lower staffing levels. Conclusion Dispersed housing appears to be superior to clustered housing on the majority of quality indicators studied. The only exception to this is that village communities for people with less severe disabilities have some benefits; this is not however a model which can be feasibly provided for everyone. There is no evidence that clustered housing can deliver the same quality of life as dispersed housing at a lower cost.

Background Despite the acknowledged difficulties of measuring satisfaction for people with intellectual disabilities, the current study examined the quality of life (QoL) of the Camberwell Cohort, a total population sample of people with severe intellectual disability and/or autism [ Wing & Gould, Epidemiology and Classification, 9, 1979, 11 ]. Methods The Lifestyle Satisfaction Scale (LSS) [ Harner & Heal, Research in Developmental Disabilities, 14, 1993a, 221 ] was combined with selected questions from the Quality of Life Questionnaire Schalock & Keith 1993, Quality of Life Questionnaire, IDS Publishing Corporation, Worthington and conducted with 12 people with intellectual disabilities and 72 proxy respondents. Results Inter-rater reliability on overall score was available for 10 participants and was acceptable with a Spearman’s Rank order correlation co-efficient over 0.8. There were no significant differences between the scores of proxies and service users on the domains of the LSS. The sample of service users who completed the interviews was too small to allow further detailed analysis of their responses. However, responses from the proxy interviews indicated that there were no differences in life satisfaction between those socially impaired and socially able. However those with autism were reported to be less satisfied on Community Satisfaction while those with challenging behaviour had lower scores overall and specifically on Community Satisfaction. Those with an IQ below 50 had lower scores overall, than those with an IQ above 50 and specifically on Recreation Satisfaction. Linear regression analysis on total QoL score indicated that only three variables seemed to be important in predicting proxy QoL scores: challenging behaviour at Time 3, IQ at Time 3 and independent living skills at Time 1. Conclusions Despite the difficulties encountered, this study provided some support for the widely help belief that QoL is lower for those with intellectual disability and for those with challenging behaviour.

Background An important question in community living is what factors influence the extent to which staff provide ‘active support’. Methods Engagement, care practices and a range of staff and organizational characteristics were studied in 72 residential homes serving 359 adults with intellectual disabilities. Managers in 36 settings were trained in person- centred active support (PCAS). A group comparison design and multivariate analysis was used to investigate the relationship between variables. Results The PCAS group showed more active support, assistance, other contact from staff and engagement in meaningful activity but no difference in choice-making or assessment of participation in activities of daily living. The PCAS group had more staff with a professional qualification, were more likely to think that challenging behaviour was caused by lack of stimulation, had attitudes more in line with a policy of community care, rated most care tasks as less difficult, and were more organized to deliver active support. The comparison group were more likely to think that challenging behaviour was learned negative behaviour, showed more teamwork and were more satisfied. Multivariate analysis identified a range of staff and organizational variables associated with engagement and active support. Conclusions The results suggest that some variables which have not hitherto been studied in relation with active support are associated with it. Professional qualification, knowledge and experience appear to be important as do some staff attitudes, clear management guidance, more frequent supervision and team meetings, training and support for staff to help residents engage in meaningful activity.

Aims: The study explored monitoring data from adult protection alerts collected by two local authorities in England between 1998 and 2005. This paper examines the data relating to people with intellectual disabilities to identify the nature, location and patterns of abuse. Method: Additional client information was imported from other client databases and integrated into a single database. The data for people with intellectual disabilities was then analysed in order to ascertain associations and patterns in the data. Results: The specific vulnerabilities of people with intellectual disabilities to abuse were identified in relation to the type and location of abuse, the perpetration of abuse, outcomes and responses. People with intellectual disabilities placed by other authorities were also found to be at a higher risk from multiple abuse and abuse from more than one perpetrator than those placed locally but with abuse more likely to be investigated and action more likely to be taken. Conclusions: Distinct patters are discernable in the abuse of people with intellectual disabilities and people in out of authority placements are more vulnerable to particular forms and types of abuse, information helpful for risk management in this area of policy and practice.

Aim: This study aimed to document the number of people with disabilities living in residential care and in particular in institutional care within 28 countries in Europe and to analyse the costs and outcomes of the transition to community-based services in order to provide recommendations for agents in these countries to help bring about the change. Method: There were two phases to this study – the first collated existing official statistics in each country on the number of people with disabilities in residential care; the second analysed the existing body of knowledge on costs and outcomes of institutional and community based services to provide conclusions and recommendations. Results: This paper will present a summary of the official statisticscollated in each country. Conclusions: More than 1.45 million people with disabilities in Europe still live in residential care with 70% of these living in services with over 30 places. Data was better on people with intellectual disabilities than for other user groups but figures collated are none-the-less an underestimation.

Aim: To explore the views of families, managers and specialists about ‘out-of-area’ placement of people with learning disabilities. Method: Information was collected for 30 people through interviews with their families, home managers and care managers. Focus-groups were conducted with community learning disability teams. Interviews and discussion concerned views about suitability of placements and their operation. Results: The results confirmed that the predicted problems of out-of-area placements occur. Placements, especially those placements which can support people with more complex needs, were difficult to find and secure. The distance involved in some placements caused problems for families, care managers, home managers and community team staff of coordinating and liaising to ensure that appropriate care is provided. Problems of poor quality care were identified by families and particularly by members of community teams. However, the findings were mixed, with care managers, home managers and those family members who agreed to be interviewed generally satisfied. Conclusions: It is clear that out-of-area placements cause some problems, particularly for community teams, but that they also satisfy some professionals and family members.

Observations were conducted in three county councils to find out whether the government's ambition to develop Learning Disability Partnership Boards (as expressed in the White Paper Valuing people) are being realized. All the partnerships practiced various inclusive activities in order to involve people with learning disabilities in public service strategies. However, there appeared to be limited opportunities for citizens to be involved in recommendations or decision-making for their area. This concurs with other research elsewhere on the involvement of citizens in state provision, i.e. public participation in civic affairs remains in the control of public sector managers. The lack of opportunities for citizens to direct the allocation of resources and strategies at a local level, regardless of their ability to process information, emphasises the limits of New Labour's citizen-public sector partnerships.

Engagement in meaningful active and relationships is important for quality of life but, for those with intellectual and developmental disabilities, engagement depends on the quality of support received from those around them. This paper describes the process of implementing person-centred active support in the Avenues Trust, and the findings from the evaluation of the implementation in six pilot residential services. Attention was paid both to training staff and to the motivational structures within the organisation. Both the quality of support provided by staff and the level of engagement increased significantly after the introduction of person-centred active support. In addition, people experienced decreased self-stimulatory and injurious behaviour, increased opportunities for choice and control, and higher levels of participation in tasks of daily living, without compromising their community involvement. Staff experienced more and better practice leadership, and staff morale improved within the services, with staff generally more positive about management, more satisfied and less likely to leave. Lessons learnt about the implementation are provided.

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.

Results from a 25-year follow-up study of the Camberwell Cohort (L. Wing & Gould, 1978, 1979) were presented. Ninety-one people, ranging in age from 27 to 41 years, were traced, and an outcome measure was developed incorporating independent functioning, residential placement, employment, and quality of life. Outcome was rated as either poor (53%) or fair (43%), with only 3% having a good outcome. Using logistic regression methods, we found that the best predictor of outcome was social impairment, with those who were socially impaired, particularly those in the aloof category, having a poorer outcome. Higher IQ at Time 1 and lower challenging behavior were also predictive of better outcome. An in-depth look at social impairment revealed that social impairment remained stable over time.

The skills, social impairments and challenging behaviours of a total population of 166 children, with severe intellectual disabilities and/or autism, were assessed through interview with the main carers, when the children were under 15 years old (time 1). Twelve years later, 141 of these individuals were re-assessed, using the same measures (time 2). “Abnormal” behaviours tended to reduce with age and were associated with poorer language skills and poorer quality of social interaction. Individuals with most abnormal behaviours at time 1, tended to have most at time 2. Abnormal behaviour at time 2 was predicted by the presence of abnormal behaviour at time 1, poor expressive language at time 1, poor quality of social interaction at time 1 and a diagnosis of autism/autistic continuum at time 1.

Background It was proposed by Rogers & Pennington (1991) 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. Having already found that imitation appeared not to be specifically or universally impaired in autism, the present study tested whether there were distinctions between different types of actions, such as symbolic versus non-symbolic, one-handed versus two-handed or symmetrical versus asymmetrical actions, on a test of elicited imitation. Methods A large battery of tasks was used to elicit imitation from three groups of autistic children and adults (aged 4–34 years of age), two groups of typically developing children and a group of children with mild-to-moderate intellectual disabilities. Results The majority of children and adults with autism had few impairments relative to the controls, although certain actions did seem more difficult, especially for the youngest children. For example, actions within the categories of 'symbolic actions' and 'asymmetrical actions' seemed to give some groups more problems. Certain types of errors such as hand reversals and using body parts as objects were found in both autistic and non-autistic groups, but, for the most part, in the youngest children in the whole sample. A final analysis compared the number of partial imitations for eight specific actions. Conclusions The overall picture was not one of an autism-specific deficit in imitation, but rather of a normal (i.e. age-related) developmental trend. These results are discussed in terms of Rogers & Pennington's theory and other leading theories.

This paper presents data from a longitudinal collaborative study of The Care in the Community Sample (Cambridge, Hayes, Knapp, Gould, & Fenyo, 1994; Cambridge and Knapp). The aim of the study was to investigate how social impairment changes are related to the move from institutional to community care using some preliminary analysis of the above data. A measure of social impairment using the Skills and Behavior Interview from the most recent follow-up of this cohort was found to be consistent with Wing’s definition of social impairment, when applied to the cohort 12 years after deinsitutionalization. This measure was then used to retrospectively identify social impairment in the same sample (of approximately 250 people) at baseline (in the institution), at 1 year and at 5 years in the community. Prevalence data pointed to high levels of social impairment in the sample (50.1%) in institutions but the decrease to 39.8% after 1 year in the community was not significant (although conversation and social mixing and initiation of conversation and social interaction did improve over time). Once in the community, social impairment in general did not change over time, although there was a significant decrease in conversation and social mixing, non-verbal communication and initiation of conversation and social interaction. These results are compared to other research findings and the implications and limitations of the study discussed.

The effects of functional grouping of people with intellectual disabilities on care practices in small residential homes in the community were investigated. A group comparison and a matched-pairs comparison were carried out in settings where less than or more than 75% residents were non-verbal, non-ambulant, had severe challenging behaviour, severe social impairment or were verbal and ambulant. Further analysis, focused on those with challenging behaviour was carried out using ordinal regression. In the group-comparison study, no significant differences were found for three of the five groups. Residents who were non-ambulant were rated as receiving care with less interpersonal warmth in grouped settings; residents with severe challenging behaviour were rated as receiving less good care practices in four respects (interpersonal warmth, assistance from staff, level of speech and staff teamwork) in grouped settings. The matched-pairs comparison found significant differences only for people with challenging behaviour, where grouped settings achieved less good results in terms of interpersonal warmth and staff teamwork. Higher adaptive behaviour and mixed settings were predictive of better care practices on 13 of 14 items of the Active Support Measure (ASM), with some setting variables also predictive for some items. Care practices only appear to vary for people with challenging behaviour, where grouped settings appear to offer less good results in some respects.

Background: The pattern of residential services for people with intellectual disability in England has changed dramatically since 1971, with many more places being made available in residential homes in the community. The aim of the present study was to assess the needs and characteristics of residents and features of all the residential homes provided by a national charity. MethodAssessments of adaptive behaviour, problem behaviour and social impairment were completed by staff who knew residents well; information about costs and staffing was provided from central records. Results: A significant proportion of residents have important care needs relating to their skills, their behaviour and their social abilities. Residents with these needs are dispersed throughout services, so that a large majority of services include one or more residents with relatively complex needs. Conclusions: Compared with services in the late 1980s, these services care for a much more disabled client group. Since individuals with high levels of particular needs are typically distributed throughout services, a very high proportion of services require staff who have relatively advanced skills. Current national plans do not adequately address this need and case management arrangements may encourage the re-creation of more institutional services.

The skills of a total population of children with severe intellectual disability and/or autism from Camberwell, South London, UK, and the initial follow-up data. taken when the subjects were adolescents and young adults (Shah 1986), are described in the present study. Changes in skills over time are presented within the categories of communication, self-care, and educational and cognitive skills, as assessed by the Handicaps, Behaviours and Skills schedule. The results indicated that skills had improved in many areas between times 1 and 2, but that this improvement was more noticeable for the children who had been youngest at time 1. The implications of these results and predictions for a further follow-up study are discussed.

Purpose of the review The purpose of this review was (i) to find and summarise all the available research evidence on the quality and costs of dispersed community-based housing when compared with clustered housing, (ii) to assess the strength of the research and identify gaps in the evidence and (iii) to interpret the research to outline the benefits and drawbacks of each model. Studies reviewed This review found 19 papers based on 10 studies presenting data comparing dispersed housing with some kind of clustered housing (village communities, residential campuses or clusters of houses). This is a sizeable body of research reporting the experience of nearly 2,500 people from four different countries. The studies covered all eight domains of quality of life, providing information on about 80 different aspects of these domains. Five studies included data on different aspects of service design and operation and three presented comparative costs. Almost all of the studies used quantitative methods with robust approaches to measurement. All studies focused on people with intellectual disabilities. Results Dispersed housing has been found to be superior to clustered settings in at least some aspects of every outcomes than dispersed housing for people with intellectual disabilities. In terms of the quality of life domains of social inclusion, material well-being, self-determination, personal development and rights there are no studies reporting benefits of clustered settings. In the physical well-being domain, clustered settings have been found to be superior in hours of recreational activity, contact with dentists, psychiatrists and psychologists, some health screening, some aspects of safety, contact with family and friends, visitors to the home and satisfaction with relationships. However, in many of these cases the better results refer only to village communities and not to campus housing or clustered housing. These serve a minority of the less disabled population and they depend on a supply of people willing to live communally with disabled residents. They are therefore an important part of the spectrum of service provision but they are only ever likely to occupy a niche in the market for care. They are unlikely to be a feasible option across the board for disabled people. In terms of costs, the commonest finding is that clustered housing is less expensive than dispersed housing. However, this cost difference appears to be due to differences in staffing levels – i.e. fewer staff are provided to support people in clustered housing than in dispersed housing. In two of the three studies which examined costs controlling for this variable there was no statistically significant difference – in one case between specialised campus and specialised dispersed housing and in the other between samples matched for client characteristics. Conclusion There is much less evidence comparing clustered settings with dispersed housing than comparing other congregate care settings (such as institutions) with dispersed housing. The results should therefore be treated with caution. They do, however, present a broadly consistent picture.

Background National minimum standards for residential care homes were introduced following the Care Standards Act 2000 in response to concern about the lack of consistency and poor quality services. These standards are intended to reflect outcomes for service users and to be comprehensive in scope. Method This study compared ratings made by care standards inspectors with research measures for 52 homes for people with intellectual disabilities serving 299 people. The research measures focused on the lived experience of residential care, including engagement in meaningful activity, choice and participation in activities of daily living. They also included measures of related care practices and organizational arrangements. Results The research measures were in general significantly correlated with each other. Most of the care standards ratings were also correlated with each other. However, only two of 108 correlations between care standards and research measures were significant. Possible reasons for this are discussed. Conclusions This study confirms that the review of national minimum standards and modernization of inspection methods recently announced by the Department of Health and the Commission for Social Care Inspection are timely and appropriate.