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Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: considerations for service development
- Authors:
- BIGBY Christine, OZANNE Elizabeth
- Journal article citation:
- Australian Social Work, 57(3), September 2004, pp.273-287.
- Publisher:
- Taylor and Francis
Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programmes for older carers occupied a unique place within the service system. Discusses a study that further explored the functions of specialist programs for this group through a comparison with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.
Parental Substitutes? The role of siblings in the lives of older people with intellectual disability
- Author:
- BIGBY Christine
- Journal article citation:
- Journal of Gerontological Social Work, 29(1), 1998, pp.3-21.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This Australian study examined the roles that siblings played in the lives of older people with intellectual disability and factors affecting this. Nearly half the sample had a sibling who acted as their primary carer after the death of the parents. However, in most cases this was not a permanent arrangement. In the long term a majority of older people did have a sibling who took responsibility for their well-being and played strong advocacy, mediator and supervisory roles. Fulfilment of such roles was associated with a lifelong close relationship between siblings.
When parents relinquish care: informal support networks of older people with intellectual disability
- Author:
- BIGBY Christine
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 10(4), 1997, pp.333-344.
- Publisher:
- Wiley
Adults with intellectual disability lack the two key providers of informal support in later life, children and a spouse. Using semi-structured interviews this qualitative study examines the informal support networks of 62 older people with intellectual disability who had left parental care after mid-life. Findings indicate that, for this subgroup of older people, normative family roles such as 'protector' and 'facilitator' were fulfilled by informal network members despite the absence spouses or children.
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.