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Conundrums of supported living: the experiences of people with intellectual disability
- Authors:
- BIGBY Christine, BOULD Emma, BEADLE-BROWN Julie
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 42(4), 2017, pp.309-319.
- Publisher:
- Taylor and Francis
Background: Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living that separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of supported living might be better realised. Method: Thirty-four people with intellectual disability participated in 7 focus group interviews and 6 people in an individual interview. Data were analysed using grounded theory methods. Results: Although participants experienced greater choice and control over their everyday lives, they did not feel they controlled the way support was provided and experienced restrictions on lifestyle associated with low income. Despite their use of community places and varied social connections to family, friends, and acquaintances, most experienced loneliness. Conclusions: If the potential of supported living is to be realised, shortcomings of support arrangements must be addressed by, for example, greater consistency of support worker skills, consumer control over recruitment and rostering, and more skilled support to build friendships and manage difficult relationships. (Publisher abstract)
"I want to see the Queen": experience of service use by ageing people with an intellectual disability
- Authors:
- BIGBY Christine, KNOX Marie
- Journal article citation:
- Australian Social Work, 62(2), June 2009, pp.216-231.
- Publisher:
- Taylor and Francis
People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic individualised planning similar to the UK concept of person-centred planning.
Hospital experiences of older people with intellectual disability: responses of group home staff and family members
- Authors:
- WEBBER Ruth, BOWERS Barbara, BIGBY Christine
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 35(3), September 2010, pp.155-164.
- Publisher:
- Taylor and Francis
A subset of data from a longitudinal study was used to examine perspectives of group home staff and family members concerning hospital experiences of group home residents with intellectual disabilities, including the strategies they used to support residents while in hospital. Focus was on 17 residents, aged 49 to 81 years at first interview, living in group homes in Victoria, who were tracked prospectively over 3 years. A total of 17 family members, 16 house supervisors, 11 accommodation program managers, and 11 staff in aged care facilities were interviewed. Twelve residents had been hospitalised at least once during the study and all had been hospitalised within the last 5 years. Staff and family reported poor support and treatment of the residents while in hospital. All positive experiences occurred in hospitals that had clear policies, resources and systems in place to address the special needs of people with an intellectual disability. Several strategies were used by staff and family members to improve the hospital experience. These included spending as much time as possible in the hospital; preparing information packages to prepare the resident for the hospital stay; attempting to partner with hospital staff; and taking on an advocacy role. Ageing of the family members and staffing implications for group homes complicated efforts to improve hospital experiences. The authors conclude that 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.