The Usher lifestyle survey: maintaining independence: a multi-centre study.

Patients with Usher syndrome face a special set of challenges in order to maintain their independence when their sight and hearing worsen. Three different types of Usher (I, II and III) are distinguished by differences in onset, progression and severity of hearing loss, and by the presence or absence of balance problems. In this study 93 Usher patients from seven European countries filled out a questionnaire on maintaining independence (60 patients type I, 25 patients type II, four patients type III and four patients type unknown). Results of Usher type I and II patients are presented. Following the Nordic definition of maintaining independence in deaf-blindness, three domains are investigated: access to information, communication and mobility. Research variables in this study are: age and type of Usher, considered hearing loss- and the number of retinitis pigmentosa-related sight problems. Usher type I patients tend to need more help than Usher type II patients and the amount of help that they need grows when patients get older or when considered hearing loss worsens. No patterns in results were seen for the number of retinitis pigmentosa related sight problems.

Strategic planning and progress under the All Wales Strategy: reflecting the perceptions of stakeholders.

Nominated representatives from the various stakeholder interests, i.e. social services, health, education, voluntary organizations, parent groups and self-advocacy groups, involved in the implementation of the All Wales Strategy for the development of services for people with intellectual disability were interviewed 2 years after the end of the initial 10-year phase. Interviewees were asked to reflect on the strengths and weaknesses of policy implementation, including: changing priorities, planning arrangements, agency roles, central guidance and financial mechanisms, consumer participation, and the impact of more recent policy or structural developments. Despite recognition of the leadership of the Welsh Office, the shift in thinking achieved, the developments made in joint agency collaboration and in consumer participation in planning, and an increasing competence to plan effectively over time, the overriding perception was that more could have been made of the opportunity afforded by the clearest and best resourced central government policy within the UK in this area. At the heart of this judgement lay concerns about pragmatic rather than strategic planning, a failure to link annual service developments to a final comprehensive end point and a related failure to integrate planning to meet community needs with hospital resettlement Factors which may have contributed to these weaknesses are discussed, as are lessons for subsequent community care policy.

Engagement and interaction: a comparison between supported employment and day service provision.

Work and non-work experiences of 16 adults with learning disabilities were compared. The results indicated that people spent significantly more of their time engaged in task-related activities during paid work than in non-work situations, where high levels of disengagement were observed. Interaction patterns varied considerably across conditions, people spending more of their time interacting with others in the non-work condition, possibly as a result of high levels of supervisory support from service staff. Differences were also observed in the direction of interaction, with clients more likely to initiate interactions in the non-work condition. A breakdown of who interactions occurred with revealed that clients tended to talk with supervisors more often than anyone else in the non-work condition. During work, clients tended to interact more often with their non-disabled co-workers, and a significant proportion of time was spent interacting with the public. The findings are discussed in relation to the relative success of the employment movement and suggestions for further research are made.

Activities and engagement in day services for people with a mental handicap.

Policy on the role and function of day services for adults with mental handicaps has changed considerably during the last 2 decades. What such settings offer their users has also changed as services have attempted to evolve in line with policy. However, the impact of these changes has gone largely unevaluated. This paper describes a study of two day centres to categorize the activity programmes of these services, and to assess service user and staff behaviour prior to a larger scale study of such services in Wales. The two centres were found to differ significantly in their programmes but not in the extent to which activities were organized in the community. Service user participation in activities varied with activity type, group composition and activity location. Whether activities were organized for the full duration of the timetabled sessions was critical to the interpretation of the extent of service user engagement. Staff showed a commendable orientation to clients and their activities in both services. Differences in the activity programmes of the two centres are discussed in terms of a continuing lack of clarity over the purposes of such day services in general. The relevance of some activities to objectives is questioned. Concern is also expressed about the resulting level of engagement achieved in planned activity.