Lisa Richardson

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.

“I felt that I deserved it” – experiences and implications of disability hate crime

Purpose – The purpose of this paper is to summarise key findings and recommendations from the “Living in Fear” research project focusing on the experiences of people with learning disabilities and autism related to disability hate crime and the experience of the police in dealing with such incidents. Design/methodology/approach – Methods included: first, a postal survey with 255 people with learning disabilities or autism (or their carers for people with more severe disabilities), of whom 24 also took part in semi-structured interviews; and second, an electronic survey of the knowledge and experience of 459 police officers or support staff. Findings – Just under half of participants had experienced some form of victimisation. The Police reported problems with the definition of disability hate crime and challenges to responding effectively. Social implications – A case study from the research highlights some of the key findings and is linked to implications for people with learning disabilities and autism,...

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.

Managers’ views of skilled support

BACKGROUND Quality of life of people with intellectual and developmental disabilities has been found to primarily depend on whether staff are providing facilitative and enabling support that helps to compensate for severity of disability. Managers have a key role in facilitating staff to provide such support. METHOD Qualitative interviews were conducted with 35 managers of supported accommodation services to explore service aims and the nature of, and challenges in providing, skilled support. Key themes were identified using a Thematic Networks Analysis. RESULTS Service aims were rarely formalised, were related to the individuals supported and not to the organisation. Managers found it difficult to define skilled support, other than by reference to individuals. Practice leadership roles were challenged as a result of austerity measures. CONCLUSIONS Front-line managers need more information and training in skilled support, with stronger leadership from senior management to provide the motivation and resources needed.