Supporting people with cognitive disabilities in decision making – processes and dilemmas

The exploratory study found that participants, including those with cognitive disability, mostly supported the broad concept of supported decision making. However supporters saw this as a complex, dynamic and frequently chaotic process. Fundamental to the process were relationships and tailoring support to the individual. The skills and knowledge required included communication skills, self-awareness, the capacity for reflective discussion, conflict resolution skills, and knowledge of strategies for tailoring the decision making process to the individual. The study revealed multiple dilemmas and tensions associated with supporting someone with cognitive disability to make a decision but most commonly mentioned were remaining neutral, managing conflicting perspectives amongst differing supporters, balancing rights with risk and best interests, and resource constraints. The study provides some key insights into the practice of supporting people with cognitive disability to make decisions and knowledge that can be incorporated into training programs for people in this role. The findings also highlight the need for further research in this area, particularly in relation to ‘what works’ in support for decision making for people with cognitive disabilit

Transition to Retirement

This Policy Bulletin describes the implementation and evaluation of the Transition to Retirement (TTR) Program that was examined in a three-year collaborative program of applied research involving university researchers and disability service providers. The Bulletin ends with recommendations for policy and practice based on our research findings and on the practical experience of delivering the program. The TTR Program offered older people with disability the opportunity to begin to build a retirement lifestyle by joining a general community group for one day a week instead of working on that day. Thus, the program fulfils an important goal of disability policy: the social inclusion of people with disability in Australian community life. The program involved: talking to people with disability about retirement, investigating their interests, finding an appropriate community group for individuals to join, seeking and then training mentors from that group, and ensuring the people with disability were actively involved so they could contribute to the group.This research was supported under the Australian Research Council’s Linkage Projects funding scheme (Project number: LP0989241) and with the assistance of two industry partners: (1) Australian Foundation for Disability (AFFORD), and (2) St John of God AccordCentre for Disability Research and Polic

Reflections on being a first generation self-advocate: belonging, social connections, and doing things that matter

Background Despite good policy intentions, people with intellectual disability continue to be socially excluded. Social geographers suggest the potential of self-authored spaces as catalysts for social inclusion. One such space, self-advocacy, is commonly perceived as part of a political movement for social change rather than a vehicle for social inclusion of its members. This paper investigated what involvement in self-advocacy has meant to long-term members of a self-advocacy group in Victoria, Australia. Methods In-depth interviews were conducted with 12 self-advocates about their reflections on involvement in the group. These data together with the commentary of 5 self-advocates during interviews with 18 self-advocacy supporters about their recollections of involvement in the group were transcribed and analysed thematically. Findings Through their involvement in self-advocacy, members of the group had gained a sense of belonging, social connections, and purposeful occupation, which included paid project work, lobbying, and organisational leadership and management. Conclusions This study suggests that self-advocacy groups can be places that foster social inclusion, potentially offering “membership” of an exclusive group, a wider social movement and of mainstream society

Predicting good Active Support for people with intellectual disabilities in supported accommodation services: Key messages for providers, consumers and regulators

Background: There is strong evidence about the effectiveness of Active Support. Recent research has established predictors of good Active Support as staff training, practice leadership, and service setting size. This paper explores features of organisational leadership and structures predictive of Active Support. Methods: Multilevel modelling with data from surveys, observations and interviews was used to identify predictors of Active Support at the levels of service users (n = 253), services (n = 71) and organisations (n = 14). Results: Good Active Support was predicted by: (1) positive staff perceptions of management, (2) prioritisation of practice and Active Support by senior managers, (3) strong management support for practice leadership, (4) organisation of practice leadership close to everyday service delivery, and (5) concentration of practice leadership with frontline management. Conclusion: These findings extend understanding of predictors of Active Support and provide indicators of service quality, with important implications for service providers, service users and those monitoring the quality of services

Quality of practice in supported accommodation services for people with intellectual disabilities: What matters at the organisational level

Background: Organisational and service level factors are identified as influencing the implementation of Active Support. The aim was to explore differences in organisational leadership and structures to identify potential relationships between these factors and the quality of Active Support in supported accommodation services. Method: Fourteen organisations participated in this mixed methods study, which generated data from interviews with senior leaders, document reviews and observations of the quality of Active Support. Results: Qualitative analyses revealed three conceptual categories. Senior leaders in organisations where at least 71% of services delivered good Active Support prioritised practice, understood Active Support, and strongly supported practice leadership. In these organisations practice leadership was structured close to every-day service delivery, and as part of front-line management. Conclusions: Patterns of coherent values, priorities and actions about practice demonstrated by senior leaders were associated with successful implementation of Active Support, rather than documented values in organisational policy or procedures

Appendix B: Forms

We assume that disability services already have established client information systems, so this Appendix contains only three forms. Each is directly related to the TTR program and to retirement planning. The forms are: 1. Retirement Lifestyle Planning form (first retirement planning meeting) 2. Retirement Lifestyle Planning form (for annual review meeting) 3. Right of return lette

Implementation of active support over time in Australia

Background: Research indicates the value of active support in achieving good outcomes across a number of quality of life domains for people with intellectual disabilities. However, implementation is not easy, and little research has explored why. We aimed to identify some of the factors that impact on implementation of active support in supported accommodation services. Methods: Data on the quality of active support, staff training and practice leadership were collected through staff questionnaires, observations and manager interviews, for between two and four years across six organisations. Results: Active support improved over time for more able people with intellectual disability, but not for people with higher support needs. There was a weak positive correlation between active support and (1) practice leadership scores, and (2) the percentage of staff reporting active support training. Conclusions: It is important to recognise the influence of practice leadership and staff training on the quality of support and ensure provision for these in funding schemes

Comparing costs and outcomes of supported living with group homes in Australia

Background: Supported living is perceived as more flexible than group homes for people with intellectual disability. This study identified costs and factors associated with quality of life (QOL) in supported living and compared this with group homes. Method: Thirty-one residents in supported living participated in a survey incorporating measures of service user characteristics and QOL. Participants in supported living were compared to a sample of 397 people in 96 group homes, and QOL outcomes compared for a matched sample of 29 people in supported living and group homes. Results: QOL differed little, supported living was cheaper, and 30?35% of both groups had similar support needs. Being younger, having autism, better health, family support, and participation in structured activities were associated with better outcomes in supported living. Conclusions: Supported living holds potential for group home residents, but greater support is required in domains such as health and interpersonal relationships