Vol 4 No 4 October 2004 - December 2004: ISSN 1445-7253
A peer-reviewed electronic journal from the Australian Indigenous HealthInfoNet
Reviews
This section of the Bulletin contains peer reviewed general summaries of Indigenous health and reviews of specific topics. If you would like to contribute to this section, please see Notes for contributors or contact us.
A review of the literature on disability services for Aboriginal and Torres Strait Islander peoples
This review is also available as a downloadable PDF using Adobe Acrobat.
Suggested citation:
O'Neill M, Kirov E, Thomson N (2004) A review of the literature
on disability services for Aboriginal and Torres Straight Islander
peoples. Australian Indigenous HealthBulletin;4(4): Reviews
2. Retrieved [access date] from |
Summary
Little is known about the actual burden of disability experienced by Indigenous people Australia, but it is likely to be considerably greater that that experienced by other Australians.xxiii
Similarly, there are no firm data about the extent to which the use of disability support services by Indigenous people reflects their burden of disability. Indirect estimates of the use of disability support services by Indigenous people suggests that as many as one-third of Indigenous people with a disability may not be taking advantage of the services available. Even if this estimate is not entirely accurate, there is a substantial body of evidence suggesting that disability support services are neither as available nor as accessible to Indigenous people as they should be.xxiv
The factors contributing to Indigenous use – or non-use – of disability support services are complex, ranging from differences between Indigenous and non-Indigenous people in attitudes to disability to racism among service providers. The literature suggests that many Indigenous people view a disability within a holistic perception of wellbeing – effectively occupying a part of a continuum from perfect wellbeing to death. This is, of course, very much in line with current international approaches, which focus on activity limitations and participation restrictions rather than on a disability per se.
Reflecting this perspective, caring for a person with a disability is generally seen by Indigenous people as the responsibility of the family and immediate kin, with only people with a severe disability being seen as the responsibility of 'welfare'.
Caring for a person with a disability is not straightforward for Indigenous families (or for non-Indigenous families), of course, and various support services can play a valuable role. These include general and disability support services. The relative poverty of many Indigenous people has major implications for many aspects of daily living, including housing and associated facilities, and transportation. The relatively low level of vehicle ownership – coupled with limited or no access to public transport – poses great difficulties for many Indigenous people in accessing general and disability support services.
For many Indigenous people, particularly those living in remote parts of the country, the real problem is the lack – or very limited availability – of general and disability support services. This aspect has been identified for therapy services, home help and personal care, specialised disability services (including equipment services), and respite services, for example.
Even if services are available, many Indigenous people with a disability and/or their families experience substantial difficulties in accessing general and disability support services. These difficulties include:
- differences between Indigenous and non-Indigenous people in understandings and values – this can result in service providers making unwarranted assumptions on behalf of or about Indigenous clients and/or following culturally inappropriate procedures, and in overt discrimination and racism;
- language barriers – these may lead to misunderstandings between service providers and Indigenous people, particularly those living in remote areas, unless translators are used; and
- poor coordination between services agencies and between levels of government.
Some services, despite being accessible to Indigenous people, experience issues related to staffing. These issues, which impact on service quality and are more common for services in remote areas, include:
- recruitment and retention of appropriately trained staff;
- inadequate orientation and training of staff for work with Indigenous people;
- insufficient Indigenous staff.
The issues summarised in this review should contribute to raising awareness about the needs of Indigenous people with disabilities and the unique issues that influence their access to disability support services. The review provides a sound basis for the development of culturally responsive disability policy and services for Indigenous people.
Endnotes
| i | An appendix summarising disability concepts, the assessment of disability, and the provision of disability support services in Australia is provided for readers who are not familiar with these areas. |
| ii | The report from the IDAR Project has been provided to the DCS, and a version is due for publication in early 2005. |
| iii | Grey literature was defined at the Fourth International Conference on Grey Literature as 'that which is produced on all levels of government, academics, business and industry in print and electronic formats, but which is not controlled by commercial publishers' [96, 97]. The grey literature may include: reports (progress and advanced reports, technical reports, statistical reports, etc.), theses, conference proceedings, technical specifications and standards, non-commercial translations, bibliographies, technical and commercial documentation, and official documents not published commercially (primarily government reports and documents). |
| iv | It was recognised that identification and collection of the grey literature is an ongoing process, which needs to continue beyond the timeframe of this review. |
| v | For example, the bibliography of a journal article or grey literature item may include reference to an unpublished report, a copy of which may be available as a PDF document on the Internet. |
| vi | Despite definite similarities, there was enormous diversity in cultural and technological aspects in environments ranging from dense rainforests to deserts [92]. The fact that there were some 200–250 different Australian Indigenous languages (and even more dialects), gives some indication of the great diversity that existed in Australia prior to 1788. This diversity is reflected in the great heterogeneity of Indigenous people in Australia today. |
| vii | Such practices were not uncommon in hunter-gatherer societies, being recognised as a part of the balance between individual and societal rights. |
| viii | The people refer to themselves as Anangu. |
| ix | 'Participation restriction’ or ‘activity limitation’ using current terminology. |
| x | The study did not include Indigenous people living in institutions. |
| xi | As is the case with most statistics derived from administrative data collections, the identification of Indigenous people is likely to be incomplete in these data. As well as the 5% of cases in which Indigenous status was not stated, it is almost certain that in some records Indigenous people have been incorrectly identified as non- Indigenous. Thus, the CSDA data almost certainly underestimate the actual use of disability support services by Indigenous people. |
| xii | Not only is there uncertainty about the actual extent and nature of disability among Indigenous people (see the section entitled ‘The pattern of disability among Indigenous people’), there are major problems in assessing the use of disability support services by Indigenous (and by non-Indigenous) people. It is beyond the scope of this report to explore these issues in detail. Interested readers should refer to reports from the AIHW, which is working actively on the development of better information. To gain an accurate measure of the relative use of disability support services by Indigenous and non-Indigenous people, it is necessary to adjust the usage figures according to need, as has been attempted here. This estimate of use based on need is quite speculative because it assumes (1) the numbers of disability support services used on the snapshot day are representative of the overall use of services; (2) the estimates of disability prevalence for Indigenous people living in the Taree area of New South Wales can be extrapolated across the country; and (3) the proportions of people identified as disabled who actually need disability support services is the same for the Indigenous population of Taree and the total population. These are major assumptions, but, in the absence of any other estimates of the extent to which Indigenous people are taking advantage of the disability support services that are available, they appear justified. |
| xiii | The terms ‘remote’ and ‘very remote’ are those used by the Australian Bureau of Statistics in measures of ‘remoteness’, added recently to the Australian Standard Geographical Classification (ASGC) [94, 95]. They are two of the five categories of remoteness, which, based largely on the Accessibility/Remoteness Index of Australia (ARIA), express the remoteness of a location in terms of the road distance to the perimeter of an urban centre (where various health and human services are available). Defined according to the ARIA value of their ABS Census collection districts (CDs), the five categories are: ‘major cities’ (average ARIA value of 0-0.2); ‘inner regional’ (average ARIA value > 0.2 and <= 2.4); ‘outer regional’ (average ARIA value > 2.4 and <= 5.92); ‘remote’ (average ARIA value > 5.92 and <= 10.53); and ‘very remote’ (average ARIA value > 10.53). |
| xiv | About three-quarters of these people also reported speaking English well or very well. |
| xv | Australian Indigenous languages included the various creole languages: ones that have developed out of some amalgamation of the language native to an area and the introduced language (English). Because they are linguistically different from creole languages in other parts of the world, those of the northern Australian mainland are known as Kriol [93]. The language in the Torres Strait is most commonly referred to as Torres Strait creole. |
| xvi | The proportion of these people who speak English ‘well’ or ‘very well’ was not reported. |
| xvii | Aboriginal English comprises a continuum of dialects ranging from close to Standard Australian English through to close to the creole languages. |
| xviii | It is beyond the scope of this report to explore the various definitions of poverty, and to present detailed data about poverty among Indigenous people. Instead, the report accepts the conclusion of a recent Australian Senate inquiry: ‘on all the standard indicators of poverty and disadvantage, Indigenous people emerge as the most socially and economically deprived’ 54 Senate Community Affairs References Committee [54, p301] |
| xix | As noted in the introductory comments to this section, the word ‘available’ is used to mean that the services are present in a particular area. The term ‘accessible’ is used in a broader sense to mean both the geographic availability of the service and the lack any barriers to use of the service. |
| xx | The Accessibility/Remoteness Index of Australia (ARIA) is used to assist in the planning and assessment of access to health-related services for people living in regional, rural and remote locations. |
| xxi | At the time, the cost of diesel fuel in Adelaide, the closest capital city, was around 73 cents. And, of course, expensive four-wheel drive vehicles are essential in these remote areas. |
| xxii | An example of trying to ‘make things work’ in relation to Indigenous ‘breaches’ of social security regulations (due largely to failure to respond to mailed correspondence) is the suggestion by social security administrators in the Northern Territory of allowing Indigenous people to be ‘physical check-in’ or ‘no correspondence’ clients if they wished [76, p6-7] |
| xxiii | The burden of disability – in terms of prevalence and types – was not a focus of this review, but clearly any thorough approach to addressing the needs of Indigenous people with disabilities requires much firmer baseline data than are available at present. |
| xxiv | As noted earlier in this report, 'available' means that a service is present in a particular area, while 'accessible' means both the availability of a service and the lack any barriers to its use. |
| xxv | For an historical overview, see [26, pp266–279] |
| xxvi | Bilateral agreements between the Commonwealth and each of the states and territories are being negotiated and will aim to improve the interface between employment services and community access services. |
| xxvii | Services for people with a disability aged 65 years or older are provided largely through the Home and Community Care (HACC) program or as a part of the services in residential aged care. |
| xxviii | Since July 2002 CRS Australia has operated as a business unit within the Commonwealth Department of Health and Ageing. |
| xxix | A similar strategy was successful in Canada in 2001. |
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