Beckie Whelton

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.

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.

Adult protection: The processes and outcomes of adult protection referrals in two English local authorities

• Summary: This article examines the processes and outcomes of adult protection referrals in two local authorities in England using adult protection monitoring data collected between 1998 and 2005, identifying learning for the use and development of adult protection monitoring. • Findings: Associations were found between aspects of process and outcome in adult protection case management; police and regulatory agency involvement increased over time, over four-fifths of referrals resulted in investigations which were associated with higher levels of inter-agency involvement, abuse was confirmed for over two-fifths of referrals, there was significant territorial variation across a range of process and outcome measures and specialist adult protection coordinators were associated with higher levels of monitoring and post-abuse work. The study concluded that more work is needed to improve and standardize adult protection monitoring data if it is to more effectively inform case management and inter-authority comparisons. • Applications: The evidence from the study suggests that adult protection monitoring data can be used to help review and organize adult protection work at agency, team and case levels and is consequently of potential value to team managers, social workers and specialist co-ordinators working in adult protection.

Quality of Life and Quality of Support for People with Severe Intellectual Disability and Complex Needs.

BACKGROUND People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life. METHODS Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110 people with severe and profound disabilities and complex needs. RESULTS On average, people spent approximately 40% of their time engaged in meaningful activities, received contact from staff 25% of the time (6% in the form of assistance to be engaged). Just over one-third received consistently good active support, which was associated with other measures of quality of support and emerged as the strongest predictor of outcomes. CONCLUSIONS Quality of life and quality of support were relatively poor, although with about one-third of people receiving skilled support. Consistently good active support was the best predictor of outcome and proposed as a good indicator of skilled support.

A better life: the implementation and effect of person‐centred active support in the Avenues Trust

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.

The characteristics and management of elder abuse: evidence and lessons from a UK case study

Despite older people representing a significant majority of victims of abuse in the UK and Europe, evidence about its characteristics and management is limited. This article reports on an analysis of adult protection referrals for older people over an eight year period in two English local authorities. It extends understanding of the characteristics of elder abuse and identifies lessons for its effective management. Findings suggest that older people are at particular risk of multiple and physical abuse. Those living alone are especially vulnerable to financial abuse and those living in a care home to multiple abuse. The most common sites of abuse were the persons own home or a care home. Just two fifths of abuse referrals were confirmed, with the vast majority involving multi-agency consultation and most resulting in ongoing monitoring. Findings also suggest that risk is a product of the intersection of dependency and setting and that information about user and carer need—especially the nature of disability—could enhance the quality of adult protection data and safeguarding responses. The study underscores the need for adult protection legislation and of committing professional resources to the prevention, identification, assessment and management of elder abuse across Europe.

A study of adult protection referrals in two local authorities: an overview of findings for managers and practitioners

Purpose – The purpose of this paper is to report the key findings from a study of adult protection referrals collected by two English local authorities during 1998‐2005.Design/methodology/approach – Referrals were analysed for patterns relating to risk with client level data supplemented by information from the local authority databases and from the Care Quality Commission. The analysis also examined associations between adult protection processes and outcomes and looked at how adult protection monitoring data could be improved to better inform safeguarding management and practice at local and national level.Findings – Sexual abuse was most frequently reported for people with intellectual disabilities, who were also at higher risk of abuse when living out of area. Older people were most at risk of financial abuse in community settings and of neglect in residential care.Originality/value – The study identifies patterns of risk in the abuse of older people and those with intellectual disabilities and inform...

Too Far to Go: Out‐of‐Area Placements for People with Intellectual Disabilities

This mainly exploratory study was a one‐point‐in‐time survey of the situation in one English county. This study involved a survey of all social care homes in the county, followed by measures of quality of life/service for a random sample of 30 people identified by the survey, interviews with home managers, service users, family carers and care managers, and focus groups with members of four community learning disability teams. The total number of people placed from out‐of‐area was estimated to be close to 2,000 (1,500 were placed by the local authority within the county). The main reason for such placements was lack of good local services, but cost also seemed important. For many of those who had been in long‐stay hospital, locality appeared not to be important. Effects varied, but at least a third of people were experiencing very poor service quality and quality of life. Family carers generally felt their relative was happy, but fear of losing the placement was a strong theme. Distance was a major difficulty for both family and care manager involvement. For local community learning disability teams, the main problems included increased workload, reduced provision for local residents, difficulty in dealing with placing authority and the poor quality of the homes. Challenges for public agencies include provision of better local services, management of the cost incentives, especially for London Boroughs, and a system where funding follows the person wherever they chose to live.

Developing an Easy Read Version of the Adult Social Care Outcomes Toolkit (ASCOT)

BACKGROUND This study reports the experiences of developing and pre-testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self-report by people with intellectual disabilities. METHODS The study has combined survey development and pre-testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument. RESULTS Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options. CONCLUSIONS The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however, its limitations must be recognized.

Imagining Autism: Feasibility of a drama-based intervention on the social, communicative and imaginative behaviour of children with autism:

We report the feasibility of a novel, school-based intervention, coined ‘Imagining Autism’, in which children with autism engage with drama practitioners though participatory play and improvisation in a themed multi-sensory ‘pod’ resembling a portable, tent-like structure. A total of 22 children, aged 7–12 years, from three UK schools engaged in the 10-week programme. Measures of social interaction, communication and emotion recognition, along with parent and teacher ratings, were collected before and up to 12 months after the intervention. Feasibility was evaluated through four domains: (1) process (recruitment, retention, blinding, inter-rater reliability, willingness of children to engage), (2) resources (space, logistics), (3) management (dealing with unexpected changes, ease of assessment) and (4) scientific (data outcomes, statistical analyses). Overall, the children, parents and teachers showed high satisfaction with the intervention, the amount of missing data was relatively low, key assessments were implemented as planned and evidence of potential effect was demonstrated on several key outcome measures. Some difficulties were encountered with recruitment, test administration, parental response and the logistics of setting up the pod. Following several protocol revisions and the inclusion of a control group, future investigation would be justified to more thoroughly examine treatment effects.