Impediments to community-based care for people ageing with intellectual disability in rural New South Wales

Abstract

The emerging phenomenon of ageing with an intellectual disability has become subject to an increasing research focus in recent years. However, there remains little knowledge regarding the specific impediments that community workers face in supporting this cohort. The aims of the current study were to identify the major factors that, direct care staff believe, have most impact upon individuals ageing with an intellectual disability in the community. A three-round Delphi project was conducted across rural areas of New South Wales in Australia with 31 disability support workers to gain their perspectives on the main impediments facing a person ageing with intellectual disability. The 2010 study identified that the issue of ageing with an intellectual disability was presenting significant problems for community-based service delivery to this group of people. The panel identified 25 different impediments to the provision of support. A thematic analysis of the items indicated three main themes of 'funding', 'training' and 'access to services'. By identifying these impediments to supporting people ageing with an intellectual disability in the community, both services and government funding bodies have the ability to plan to overcome both current and future problem areas. This identification of impediments may facilitate individuals to receive more appropriate assistance, which in turn may lead to an improved quality of life and maintenance of a community-based placement rather than premature admission to the congregate-care system. This study is particularly timely, given that Australia is in the midst of implementing a National Disability Insurance Scheme, and is an opportunity for all levels of government to agree on the mechanisms to appropriately assist individuals with an intellectual disability to continue to be supported in the community as they age.

Self-reported physical and mental health of Australian carers: a cross-sectional study

“…8 It is further understood that there is a higher proportion of informal carers in rural localities compared to metropolitan locations, 11 and it is recognised that healthcare issues are potentially worse in country areas where access to healthcare services may be compromised. 28 The SF-36 Scale has been used in some Australian longitudinal studies such as the Household Income and Labour Dynamics Australia (HILDA), using a panel survey design, 44 and the Women's Health Australia (WHA) study. 45 However, the HILDA survey does not have a specific focus on information about caregiving issues and its impact on health, whereas the WHA is limited to women participants in specific age cohorts.…”

“…25 26 A failure to receive appropriate and timely treatment magnifies the issues for carers, as the existing health condition then worsens progressively over time, 27 which then places additional stress onto the carer. 28 Individuals in rural areas are less likely to receive formal carer training to cope with these concerns, 29 and this in turn can lead to issues with poor self-esteem. 30 In spite of these issues, there remains only limited research that specifically examines the issues and caregiver burden facing individuals in rural areas of Australia.…”

“…24 Scores on the K-10 range from 10 to 50 with higher scores indicating higher levels of psychological distress. The designated cut-off scores for low (10)(11)(12)(13)(14)(15), moderate (16)(17)(18)(19)(20)(21), high (22)(23)(24)(25)(26)(27)(28)(29) and very high (30-50) levels of psychological distress. Australian population norms were drawn from Australian Bureau of Statistics data.…”

Ageing‐related experiences of adults with learning disability resident in rural areas: one Australian perspective

“…As such, various chronological figures including 45, 50 and 60 have all been used in previous research to define when an individual may be considered ageing (Bigby, ). However, irrespective of the definition, it is known that as this cohort of the population ages, there is an increase in care needs (Haveman et al ., ), which can result in additional barriers to service access (Wark et al ., ).…”

Challenges in providing end‐of‐life care for people with intellectual disability: Health services access

“…Bureaucratic and practice barriers have been identified that limit the rights of people with intellectual disabilities to access appropriate end‐of‐life support (Read & Todd, ; Todd, ; Wark, Hussain, & Edwards, ), and this is resulting in suboptimal care being provided to a highly vulnerable section of the community (Read, ). There is ongoing uncertainty across rural and metropolitan areas of Australia on how to best support individuals with intellectual disability during their end of life (Wark, Hussain, & Edwards, ; Wiese, Stancliffe, Balandin, Howarth, & Dew, ), both in terms of how and where such services should occur, and with respect to the intersection between disability providers and the mainstream and specialist health services (Wiese, Stancliffe, Dew, Balandin, & Howarth, ; Wiese, Stancliffe, Read, Jeltes, & Clayton, ).…”