Christine Bigby

Known well by no‐one: Trends in the informal social networks of middle‐aged and older people with intellectual disability five years after moving to the community

Abstract Background Informal relationships are central to conceptualisations of quality of life. Deinstitutionalisation studies consistently suggest a trend of increased contact with family and friends by people with intellectual disability (ID) following relocation from an institution to the community. In this study, changes in the nature of the informal relationships of residents 5 years after leaving an institution were examined. Method A sample of 24 participants was randomly selected from a group of 55 residents who moved to the community. Data were collected prior to leaving the institution, and 1, 3 and 5 years after the move, through interviews with staff, a telephone survey with 20 family members, and intensive case studies undertaken with a small purposive sub‐sample of 11 residents. Results Data indicated that: (i) residents did not form new relationships after relocation, (ii) the number of residents in regular touch with a family member decreased, and (iii) patterns of contact changed as residents aged. Some 62% of residents had no‐one outside the service system who knew them well or monitored their well‐being. Conclusion Services must take a more active role in supporting the development of relationships between individuals with ID, particularly those who are middle‐aged or older, and people outside the service system, and in adapting to the changing capacity of ageing families.

‘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 residents 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.

Reflections on Doing Inclusive Research in the "Making Life Good in the Community" Study.

Abstract Background The involvement of people with intellectual disability in research is framed as inclusive, denoting their active participation in its processes. However, questions are raised about ownership and control, genuineness of involvement, and the need for honest accounts to develop practice. Such issues are particularly pressing in Australia, where there is the absence of a strong self-advocacy movement to partner with academics or hold them to account. Method Action research was used to reflect on and progressively refine the support provided by a research mentor to a co-researcher with intellectual disability employed on a large multimethod study. Results and Conclusions Accepting the co-researchers strengths and designing support on the job rather than teaching them to “pass” before venturing out in the field are important in ceding control. Support required for a co-researcher is more than practical and involves developing a relationship that can actively challenge views and foster reflection. Ownership of questions and disseminating of outcomes are hampered by contextual factors such as tender processes, short-term positions, and a failure to acknowledge the support required to present findings.

Beset by obstacles: A review of Australian policy development to support ageing in place for people with intellectual disability

Abstract Background Australian government policy regards people with intellectual disability (ID) as citizens with equal rights, which means that they should have access to the same opportunities as the wider community. Ageing in place is central to aged care policy in Australia for the general population. Method This paper reviews policy to support the provision of similar opportunities to age in place for people with ID, and the reasons for its slow development. Results Due to lifestyle patterns earlier in the life course, many people with ID experience a mid‐life disruption to their accommodation, and may live in a group home as they age or may move prematurely to residential aged care. The absence of mechanisms to adjust disability funding as needs change, and the existence of policy that denies residents in group homes access to community‐based aged care, forces disability services to “go it alone” to support ageing in place. Conclusion Despite a national priority to improve the interface between the disability and aged care sectors, administrative and funding characteristics continue to obstruct the development of implementation strategies to support ageing in place for people with ID, which remain at the stage of an exploration of the issues.

Ageing people with a lifelong disability: challenges for the aged care and disability sectors

Australia is experiencing a rapid increase in both the absolute numbers and proportion of people who are ageing with a lifelong disability. Aged care and disability are the two key social policy sectors that impact most directly on formal services available to this group. Potentially they may be included or excluded from either sector. This paper compares and contrasts Australian policy directions in aged care and disability. Using people with intellectual disability as an exemplar of those who are ageing with a lifelong disability, the paper analyses their location within and the services offered to them by each sector. The paper argues that neither sector adequately addresses the issues raised by the needs of this group and suggests why this is so. Directions for policy and service developments necessary to ensure that the needs of this growing population are met are suggested. These are broadly categorised as; systematically bridging existing gaps with specialist services; supporting inclusion and ensuring older people with lifelong disability are visible within the aged care system; adapting and resourcing the disability sector to facilitate ageing in place; and developing partnerships and joint planning aimed at the removal of cross- and intra-sector obstacles to accessing appropriate services.

Hospital experiences of older people with intellectual disability: Responses of group home staff and family members

Abstract Background This study reports on the hospitalisation experiences of older adults with intellectual disability living in group homes. Methods Grounded dimensional analysis was used to guide data collection and analysis. Group home residents were tracked prospectively over a 3-year period. Interviews were conducted with family, group home, and aged care staff and managers, and some residents. Results Findings highlighted the difficulty people with intellectual disability experience in hospital settings. Findings revealed extensive strategies undertaken by family members and group home staff to improve hospital experiences. Ageing of the family members and staffing implications for group homes complicated efforts to improve hospital experiences. Conclusions The current absence of systems to accommodate the special needs of people with intellectual disability in hospital settings has significant consequences for group homes, family members, hospital staff, and residents. Most hospital systems appear to be poorly designed to care for this vulnerable population.

A survey of people with intellectual disabilities living in residential aged care facilities in Victoria

BACKGROUND Australias national ageing policy recognises that people ageing with intellectual disability (ID) require particular attention, yet there is no policy framework concerning this population. This study describes the distribution and characteristics of people with ID in residential aged care in Victoria, provides insights into the pathways they take into aged care, and gives some indications of how facilities adapt to their needs. METHOD A postal survey was sent to 826 residential aged care facilities in Victoria, seeking information from directors about their residents with ID. Facilities that responded were fairly representative of all facilities in Victoria. FINDINGS Residents with ID were younger, had entered at an earlier age and remained longer than other residents. Their reported dependency profile was similar to the general aged care population, although the incidence of dementia was lower. Primary areas of concern identified by providers were: inability to fit into the resident community, lack of participation in activities and lack of meaningful relationships. CONCLUSION This study provides a first glimpse into how older people with ID find their way into aged care and how others view their experiences once there. It suggests that further investigation is required into the accuracy of assessment undertaken prior to entry to more clearly understand whether residents with ID are inappropriately placed in residential aged as a result of a shortage of disability accommodation and inadequate resources to support aging in place for those in such accommodation.

Issues of active ageing: perceptions of older people with lifelong intellectual disability.

Objective(s):  The study aimed to investigate the lived experiences of older people with lifelong intellectual disability and to explore the meaning of active ageing for this group.

Social Interaction with Adults with Severe Intellectual Disability: Having Fun and Hanging Out

BACKGROUND Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. METHOD Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable interactions. Data were collected through observation and interviews, and data were analysed using a constructivist grounded theory approach. RESULTS An overarching category of sharing time together with two main sub-categories of Having fun and Hanging out emerged. Having fun was composed of routines and comedic interaction; hanging out was comprised of contact and presence. CONCLUSIONS Legitimizing mirth and sharing time in social interactions may supplement paid worker job satisfaction and increase opportunities for social inclusion by people with severe intellectual disability.

Uncovering Dimensions of Culture in Underperforming Group Homes for People with Severe Intellectual Disability

Culture recurs as an important but under-investigated variable associated with resident outcomes in supported accommodation for people with intellectual disability. This study aimed to conceptualize the potential dimensions of culture in all group homes and describe the culture in underperforming group homes. A secondary analysis, using an inductive interpretative approach, was undertaken of a large qualitative data set from a study that had used ethnographic and action research methods to explore the quality of life outcomes for residents in 5 small group homes. Five categories were developed: misalignment of power-holder values with organizations espoused values, otherness, doing for not with, staff centered, and resistance. Differences from institutional culture are discussed, and the potential of the findings as a starting point to consider culture in high performing group homes and develop a quantitative measure of culture.