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.

Observing practice leadership in intellectual and developmental disability services.

BACKGROUND: Improving staff performance is an issue in services for people with intellectual disability. Practice leadership, where the front line leader of a staff team focuses on service user outcomes in everything they do and provides coaching, modeling, supervision and organisation to the team, has been identified as important in improving staff performance. To date this finding is based only on self-report measures. METHODS: This paper describes and tests an observational measure of practice leadership based on an interview with the front-line manager, a review of paperwork and observations in 58 disability services in Australia. RESULTS: The measure showed good internal consistency and acceptable inter-rater reliability. Practice leadership was associated with staff practice and outcomes for service users. The observed measure of practice leadership appears to be a useful tool for assessing whether leadership within a service promotes enabling and empowering support by staff. It was found to discriminate higher and lower performing services in terms of active support. CONCLUSIONS: The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and reliability of the measure. The measure is potentially useful in contexts of both research and service development. The confirmation of previous findings from self-report measures that practice leadership is related to the quality of staff practice and outcomes for service users has implications for policy and practice in terms of the training of managers and structures for organisational management.

Practice leadership and active support in residential services for people with intellectual disabilities: an exploratory study.

BACKGROUND: We hypothesised that a key factor determining the quality of active support was 'practice leadership' - provided by the first-line manager to focus staff attention and develop staff skills in providing direct support to enable people with intellectual disabilities to have a good quality of life. This exploratory study focused on what levels of practice leadership were found and its role in explaining variation in active support. METHOD: Relevant aspects of management, including practice leadership, were assessed by questionnaires administered to staff in residential settings alongside observational measures of active support and resident engagement in meaningful activity. Relationships between these variables were explored using regression and post hoc group comparisons. RESULTS: There was wide variation, with average levels of practice leadership being low, though improving over the period studied. Practice leadership had a significant impact on active support, but was fully mediated by the effect of quality of management. When the quality of management was higher better practice leadership did produce a significant difference in active support. However, higher quality of management on its own did not produce better active support. CONCLUSIONS: A number of limitations are acknowledged and further research is required. Practice leadership appears to be an important factor in enabling staff to provide active support but as part of generally good management. Given the rather low levels found, attention needs to be given to the training, career development and support of practice leaders and also to how to protect their time from their many other responsibilities.

'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 resident's 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.

People with learning disabilities in 'out-of-area' residential placements: 1. Policy context.

BACKGROUND: A growing shortage of residential care for people with learning disabilities leads to placement funded by one authority in another authority's area. Such out-of-area placements are governed by guidance from different government departments in respect of different funding streams. METHOD: This paper presents an analysis of this guidance and shows that it is inconsistent and incomplete. RESULTS AND CONCLUSION: The guidance creates a framework of incentives for health and social services authorities that could lead to people being placed out-of-area against their own best interests, with negative consequences for them and for the 'receiving' authorities. A companion paper uses interview data to examine the reasons for and effects of out-of-area placement.

People with learning disabilities in 'out-of-area' residential placements: 2. Reasons for and effects of placement.

BACKGROUND: Official guidance on out-of-area placements creates incentives that could lead to people being placed against their own best interests, with negative consequences for them and for the 'receiving' authorities. METHOD: Information was collected for 30 people through interviews with them, their families, home managers and care managers. Interviews concerned resident needs, reasons for placement, the homes, care management arrangements, resident quality of life and social inclusion. Information on care standards was abstracted from official records. RESULTS: The main reasons for out-of-area placement were insufficient local services of acceptable quality, financial incentives and loss of family contact through prior institutionalization. The effects varied, with the most disabled people experiencing worst outcomes. Some aspects were worse than comparison studies (choice, community involvement, number of homes meeting all the national minimum standards), some were the same (participation, family visiting and other contact), and one was better (visits to families). Variation was also evident in the involvement of social services staff from the placing authority and in ease of access to local healthcare resources. CONCLUSIONS: Social services and health authorities should develop services locally that can support people with the full range of individual needs. Perverse incentives should be removed, perhaps by increasing the application of direct payments and personalized budgets.

Residential care in the community for adults with intellectual disability: needs, characteristics and services.

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. METHOD: Assessments 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. DECLARATION OF INTEREST: The first author is a Trustee of the charity.

Changes in skills for people with intellectual disability: a follow-up of the Camberwell Cohort.

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.