Purpose: The purpose of this paper is to provide a commentary on "Making the world a better place: achieving impact through innovation and an entrepreneurial ethos" written by John Pepin. Design/methodology/approach: The commentary considers the broader role of philanthropy especially with respect to learning disability and autism. Findings: The work of the Shirley Foundation is a good example of the contribution that can be made by philanthropy. While philanthropy has many critics it remains one way in which significant change can by supported. Originality/Value: Partnerships between philanthropic and government funding may help both to address some of the concerns raised about philanthropy and maximise the potential for beneficial impacts.
BackgroundThe front‐line management role in services for people with intellectual disabilities remains rather under‐researched. The aim of this study was to examine the experiences of registered managers in services for adults with intellectual disability who exhibit challenging behaviour.MethodInterviews, primarily focussed upon staff practice, were conducted with 19 managers of staffed group homes in SE England. Transcripts were analysed using interpretive phenomenological analysis.ResultsFive groups of themes emerged: monitoring staff performance, supporting new ways of working, shaping staff performance, influence of external and employing agencies, and importance of participants' personal values and experiences.ConclusionThe themes identified contribute to a conceptual framework for thinking about front‐line management/practice leadership. The limitations, and potential implications, of the findings are discussed.
Background Concern has been expressed repeatedly about the cost and quality of residential placements for adults with learning disabilities and additional needs. This study sought to identify characteristics of the highest cost placements in the South‐East of England.Method Lead learning disability commissioners in the South‐East of England were asked to provide information about the five highest cost residential placements that they commissioned for adults with learning disabilities.Results The average placement cost of £172k per annum disguised wide variation. Individuals placed were mainly young and male with high rates of challenging behaviour and/or autism spectrum disorder. Most placements were in out‐of‐area residential care. The highest costs were associated with hospital placements and placements for people presenting challenging behaviour.Conclusions Young, male adults with learning disability, challenging behaviour and/or autism continue to receive very high cost residential support, often in out‐of‐area residential care. There remains limited evidence of plans to redirect resources to more local service developments.
Background Perceived problems around the use of physical intervention (PI) to manage challenging behaviour have led to UK initiatives to encourage policy development and accredited training. However, information on PI use and the impact of these initiatives remains limited.Method Adult residential services within an English region were sent a questionnaire regarding PI use, policy, staff training and monitoring/management.Results Physical intervention use was reported by 47% of the services. Of services using PI, 65% reported having a policy governing its use and 79% reported providing staff training. Where restrictive PI was used, comparable figures were 82% for policy and 84% for training. PI use was reported to be monitored in some way by 94% of services. Opinions offered supported the reduction of PI use.Conclusions Physical intervention use is widespread. National guidance on policy and training is widely followed though unimplemented by a minority. The time may be right to more explicitly aim for a reduction in PI use within services.
Background Media representation of people with intellectual disabilities may contribute to general perceptions held about them and reflect changes in policy and service provision.Materials and Methods Articles from The Guardian newspaper in 2001 were analysed and compared to a previous analysis of material published in 1983.Results There was much more coverage of people with autism or Down syndrome than expected from their actual frequency in the British population of people with intellectual disabilities. Newspaper reports continued to be about children more often than expected when about autism or Down syndrome, but not when about people with other intellectual disabilities. Medically related representations were less than in the past but juxtaposition with other client groups continued. More 'people‐first' terminology was now used except in respect of people with autism. Articles systematically under‐represented complexity and severity of need.Conclusions Policy and service changes may have contributed to the decline of medically‐ and child‐related representations within non‐specific intellectual disabilities. The continued over‐representation of children in articles about autism and Down syndrome, and the generally increased reference to people with those syndromes, suggests growing differentiation within the population of people with intellectual disabilities. The focus on people with less severe or complex disabilities echoes criticisms of Valuing People.
Normalisation, the theoretical framework that underpins the movement of services for people with disabilities from long stay hospitals, has recently become the focus of much academic and professional attention. As the community care debate has moved into the public arena, it has attracted a certain amount of criticism, acknowledging the political and philosophical conflicts that surround it. Normalisation: A Reader for the Nineties provides a much needed, informed appraisal of this controversial practice and combines various perspectives on the subject, including applied behavioural analysis, social policy and psychodynamic approaches. Thus it explores the discrepancies between the ideal and the reality and extends the debate by drawing comparisons, with other political and social ideologies.
ABSTRACTArticles from a British newspaper were analysed in terms of: the roles into which they cast the people with mental handicaps to whom they referred; and the frequency of their juxtaposition with other devalued groups. Results suggested that the articles were not representative in their description of people with mental handicaps, describing them as being children and patients more frequently than would be expected. Juxtapositions, particularly with people having mental health problems, occurred in about a third of the articles. Comparative analysis of the articles written by staff reporters and those written by non‐staff suggested that the newspaper's own reporters were more likely to misrepresent the population of people with mental handicaps than other writers.
AbstractBackgroundDespite its importance within behavioural intervention, it remains unclear how best to achieve high procedural fidelity. This paper reviewed studies on improving procedural fidelity of behavioural interventions for individuals with intellectual and developmental disabilities (IDD).MethodA systematic literature search was conducted, which identified 20 studies meeting inclusion criteria. Data were extracted on study design, participant characteristics, intervention, target behaviours, effect sizes, maintenance, generalization and social validity. A quality rating was also applied.ResultsA total of 100 participants took part in the included studies. Most participants were teachers working with children in school settings. There was a significant positive correlation between level of procedural fidelity and client outcomes. Feedback was the most commonly employed intervention to improve procedural fidelity.ConclusionsMore research should be conducted in environments with high levels of variability such as community homes to determine how to reach and maintain high levels of procedural fidelity.
BackgroundPositive Behavioural Support (PBS) has been shown to be effective in minimizing challenging behaviour and improving the lives of people with intellectual disabilities. Training in PBS is an important factor in achieving good coverage in the use of PBS. The aim of this study was to evaluate the impact of training managers of social care services in PBS.MethodA year‐long training programme in PBS was delivered to 50 managers of community‐based services for people with challenging behaviour. Data were collected pre‐ and post‐training, and at six month follow‐up. A non‐randomized control group design was used.ResultsData demonstrated significant reduction in challenging behaviour. However, there was no change in quality of life for service users.ConclusionTraining in PBS can reduce challenging behaviour in people with intellectual disabilities; demonstrating any impact of PBS training on quality of life remains a challenge.
Background This study sought to gather information about the impact of extended training in positive behaviour support on staff knowledge, causal attributions and emotional responses.Methods Students completed questionnaires at the beginning, middle and end of a University Diploma course to measure changes in their knowledge of challenging behaviour, their causal attributions and their emotional responses.Results Students' knowledge significantly increased across the three data points. Students became less likely to attribute challenging behaviour to emotional causes. Changes in respect of making more behavioural attributions varied across different measures. Negative emotional responses reduced especially those related to depression/anger.Conclusions The training course presented here was associated with changes in student knowledge, attributions and emotional responses that are likely to be associated with better staff performance and better outcomes for people with intellectual disabilities.
ABSTRACTVerbal interactions involving direct care staff in a group home for people with moderate and severe mental handicaps were observed. The total amount of interaction staff had with residents and with each other was compared. The existence of interaction under different configurations of staff and residents was also examined. Overall, the care staff were involved in interactions across 71.1 per cent of observed intervals. They were almost twice as likely to be involved in interactions to or from residents (47.3 per cent) than to or from other staff (25.9 per cent). However, when compared across different configurations, interactions with residents were less frequent when other staff were present, suggesting that interactions with staff were preferred. Examination of staff‐staff interactions suggested that these were largely work‐related, so to dismiss them as detrimental to people's work is premature. Ways in which staff‐staff interaction may be important are discussed.
Background The use of physical intervention (PI) with people with intellectual disabilities continues to cause concern. This study sought to clarify the frequency and circumstances of PI use and gather data on the characteristics of individuals subject to PI.Method Data on individuals subject to PI were gathered by postal questionnaire completed by service providers from three samples: people who (i) had attended a PI conference and/or purchased a PI policy document; (ii) operated in a specific geographical area of England and (iii) operated specialist assessment and treatment settings for children/adults with intellectual disabilities throughout the UK.Results Frequent PI use was reported. Restraint was most commonly reported – monthly or more frequently with most individuals. Overall, those receiving PI were more likely to be young, male, not legally restricted and identified as having an autistic spectrum disorder than those who did not receive PI.Conclusions The relatively frequent use of PI is consistent with routine rather than last resort use. Such use carries risk of physical and psychological damage. Service providers should systematically reduce the frequency of use of PI.
Background. Physical interventions for people who have intellectual disabilities are sometimes necessary, even though they are known to present dangers to both service users and staff. The present report concerns an initial study of training in physical interventions amongst a group of senior staff and their views on a recent policy framework on physical interventions developed by the British Institute of Learning Disabilities (BILD) and National Autistic Society (NAS).Method. The participants in this initial study included those who had attended conferences on the policy and those who had purchased the policy document. All participants were sent a questionnaire asking them about their training in, and use of, physical intervention methods, and their opinions on the policy document.Results. The participants came from a variety of services and were relatively well qualified and senior because of the way the sample was derived. They mostly had some training in physical intervention methods, although the type of training varied somewhat with their employing organization. Most participants were very positive about the BILD and NAS policy framework, and about two‐thirds of the participants said that their services had, or were developing, a written policy on physical interventions.Conclusions. This group of staff, many of whom were trained in physical interventions, rated the BILD and NAS policy framework as very helpful. There remained a clear need for guidance with respect to the advantages and disadvantages of the many available methods, and an evidence base on which to judge the effectiveness of different methods of physical interventions.
AbstractBackgroundRestrictive measures (RM) are prevalent in services for people with intellectual disabilities. This study investigates managerial awareness of RM and the nature of organisational supports required to reduce their use.MethodA survey asked front‐line managers and staff what (RM) were used, their purpose, impact and importance (10‐item Likert scales) and what organisational changes were required (free text). Responses were analysed using descriptive methods and content analysis.ResultsManagers reported a lower use of RM, compared with staff. According to managers, RM were mainly used to keep service users from harm, their use having a significant impact. Opportunities to change practices were limited by a lack of resources and organisational support.ConclusionFront‐line managers seem to lack the capacity to address the use of RM due to organisational drift; limited manager time and opportunity to allocate resources; inadequate environments; and lack of skilled staff, knowledge and relevant professional input.
