Month: October 2004

his 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 http://www.healthinfonet.ecu.edu.au/html/html_bulletin//bull_44/reviews/oneill/reviews_oneill_1.htm

 

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• Acknowledgments
• Introduction
• Methodology

Acknowledgments

Particular thanks are extended to:

• the Western Australian Disability Services Commission (DSC) for funding that enabled
  the review to be undertaken, and for permission to publish this edited version;
• staff of the Australian Indigenous HealthInfoNet for their support and encouragement in
  the preparation of this review; and
• the anonymous reviewers of this review for their constructive comments.

Introductionⁱ

The new Commonwealth State/Territory Disability Agreement (CSTDA) directs special attention to the ‘heightened vulnerability’ of Indigenous people with a disability [1, p3]. This special attention reflects the increasing recognition by the various government agencies responsible for coordinating disability support services that there was ‘a need to raise awareness about the needs of Indigenous people with disabilities and the unique cultural issues that are involved’ [2, p10]

In attempting to better understand the needs of Indigenous people with disabilities in Western Australia, the Disability Services Commission (DSC) established in October 2001 an Access for Indigenous People Steering Committee to oversee the development of culturally responsive disability policy and services for Indigenous people. Recognising that little was known about the needs and issues experienced by Indigenous people with disabilities and their families and how to respond to them, the Steering Committee supported the development of the Indigenous Disability Action Research (IDAR) Project by the DSC in partnership with Edith Cowan University (ECU). The IDAR Project involved state-wide consultations and action planning with Indigenous people with disabilities, their families, carers and service providers.ⁱⁱ

To ensure that the IDAR Project benefited also from the existing literature about disability support services for Indigenous people, DSC commissioned this literature review. The specific aims of the review were to:

• identify the unique issues confronting Indigenous people with disabilities, their families
  and communities;
• understand the ways in which contemporary Indigenous people view the concept of
  disability and identify the implications of this view(s) for providing support and care
  to a person with a disability; and
• identify barriers that prevent Indigenous people with disabilities, their families and
  carers from accessing family, community and formal services.

This paper summarises the findings from the literature review. After outlining the methodology used for the literature review, the following sections: review Indigenous perceptions of disability; provide a brief overview of the burden of disability among Indigenous people; summarise information about caring for Indigenous people with a disability and the use of disability support services. This is followed by sections reviewing issues affecting the access by Indigenous people to disability services, and workforce issues impacting on the availability and accessibility of disability support services to Indigenous people.

Every attempt was made to locate and collect all relevant literature, much of which is in the so-called ‘grey literature’.ⁱⁱⁱ A considerable body of grey literature was identified and collected, but it is likely that some useful sources have not identified.

Methodology

The Australian Indigenous HealthInfoNet Bibliography was the initial source of information about disability among Indigenous peoples. The bibliography includes details of around 8,000 items, including journal articles, books and book chapters, government and other reports, and theses. Searches of Science Direct, HealthSTAR, Australian Public Affairs Information Service (APAIS), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Medline were used to check the completeness of this bibliography. Relevant documents were recorded in a separate EndNote library.

The identification, collection and inclusion of the grey literature were initiated also.^iv

These mechanisms of identifying relevant materials were supplemented by targeted searches using standard Internet search engines, particularly Google. In many cases, these searches were informed by clues gained from perusal of previously collected materials.^v In other cases, reports and other materials were identified by searching relevant Internet sites (such as the Productivity Commission, which is currently undertaking a review of the Commonwealth Disability Discrimination Act).

Indigenous perceptions of disability

As with many aspects of Indigenous life before the colonisation of Australia that began in 1788, little is known about disability – in terms of Indigenous perceptions of disability, the levels of disability, or the ways in which people with a disability were cared for by others. And, reflecting the great diversity of Indigenous peoples – Australian Aborigines and Torres Strait Islanders – living on the Australian mainland, Tasmania, the Torres Strait Islands and other islands, there would be multiple ways in which disability would have been conceived and responded to.^vi

It is somewhat surprising, however, that ‘there are only passing references to people with impairments in the journals and writings of the early explorers, missionaries and anthropologists’ [3]. While noting that the status of people with impairments in Indigenous communities prior to the direct impact of colonisation is ‘primarily based on speculation and conjecture’, Ariotti concluded that they were ‘treated and cared for no differently from other members of the group or clan’ [4, p218]. Historical and anthropological sources reviewed by Ariotti suggest that people with severe impairments were, on occasion, left behind to die, and infanticide was practiced to a limited degree throughout Australia [3, 4].^vii

As a part of his intensive research among the Ngaanyatjarra, Pitjantjatjara and Yankunytjatjara people living in the cross-border region of Western Australia, South Australia and the Northern Territory,^viii Ariotti found that there were discrete Pitjantjatjara words for specific impairments, but that there was no word for disability – that is, there was no abstract term that ‘differentiated between or separated people with impairments from the rest of the community’ [4, p218]. Having no word for disability, contemporary Anangu have attempted to adapt an existing word, nyumpu (crippled or maimed), to make sense of the concept of disability. This adaptation is not without problems, however, as some people have objected to its use, feeling that they were being ‘labelled and stigmatised, not about their personal limitations, but about their perceived social standing’ [4, p219]. This reaction reflects the fact that ‘it is not the functional limitations of impairment which constitute the greatest problem faced by disabled individuals, but rather societal and social responses to it’ [5 cited in 4].

The holistic way in which impairments have been, and are, perceived among the Anangu people is, of course, consistent with the holistic way in which Indigenous peoples generally have perceived health and related issues [6-8]. It is important, as Ariotti points out, that ‘services providers work from a framework that recognises that disability is perceived in broad holistic terms and does not stay confined to the limitations and sense of loss experienced by the individual person’ [4, p211].

Ariotti’s findings among the Anangu are similar to those of a less rigorous study undertaken in the Top End of the Northern Territory in 1984 [9]. This study, of Indigenous people living in Darwin, Katherine, Bamyili and Ngukurr, found that: disability only became an issue if it caused a handicap;^ix and social stigma did not attach to disability or beliefs about cause(s). The management of handicaps by Indigenous people may be quite different to non- Indigenous ways and a person with a disability must be viewed ‘through their individual perception of handicap and in the context of their culture and lifestyle’ [9 p12]. These findings about Indigenous perceptions of disability are consistent with international findings that where sociability is prioritised above productivity in a cultural group there is no limit to participation in ordinary life events by people with a disability [10, 12 cited in 11].

In recognition of differences in perceptions of disability in non-western cultures generally, and also of differences between urban and remote Australian Indigenous communities, field testing of the International Classification of Impairments, Disabilities and Handicaps (ICIDH) included study of definitions, services required and outcomes expected in two Indigenous communities in the Northern Territory [13]. It was found that engagement with family and fulfilment of family roles influenced how ‘able’ Indigenous people felt, but that geographical inaccessibility was a handicap and an impediment to a ‘healthy’ life. Generally, ‘people were often not aware of how much they were limited by their condition. Some people had different expectations of health and different perceptions of what is normal and expected’ [13 p9].

The study found that a distinction was made between congenital disabilities and those caused by accidents – the former often being attributed to some maternal wrongdoing [13]. Attitudes also differed in relation to physical and mental disability, with intellectual or behavioural problems being simultaneously attributed to medical and supernatural causes.

An earlier study in the Northern Territory had noted that highly visible bodily impairments (such as amputations) were more likely to be seen as disabilities, while age-related restrictions were regarded as part of being ‘just old’ [11].

All of the research discussed above relates to Indigenous people living in remote parts of Australia – or still having close cultural and temporal links with remote communities – and little attention has been directed specifically at the perceptions of disability of Indigenous people living in the rural and urban areas of southern Australia. The valuable research that has been undertaken in New South Wales [14-18], Victoria [19, 20] and Western Australia [21] has focused largely on the current issues regarding access to and use of disability services by Indigenous people. Much of this research included attention to cultural and social aspects, but mainly in relation to the barriers to services. As such, the scope of this research is not as broad as that undertaken in more remote parts of the country, from which most information about Indigenous perceptions of disability is derived.

The general features emerging out of the research are:

• Indigenous people with a disability are generally not excluded from or stigmatised in their communities;
• some disabilities may be seen as a ‘pay-back’ for a past wrongdoing, and other may be seen as something ‘special’;
• independence may not be seen as a major issue in some Indigenous communities;
• disability may be viewed as a family or community problem, rather than a personal one;
• some people with severe disabilities may be seen as the responsibility of ‘welfare’; and
• a person may be identified and named after their disability (for example, a person with an eye injury may be known as ‘one eye’) [22]

Reflecting the holistic ways in which Indigenous people viewed – and still view – health and related issues [6-8, 23], it is not surprising that many Indigenous people tend not to separate disability and health conceptually [21].

Perhaps this tendency should not be surprising – even from a non-Indigenous perspective – in view of the fact that disability is an ‘umbrella term for any or all of: an impairment of body structure or function, a limitation in activities, or a restriction in participation’ [26, p332). Measurement of the prevalence of disability in Australia has reflected this continuum, with the Australian Bureau of Statistics using in its 1998 Survey of Disability, Ageing and Carers the definition: a ‘limitation, restriction or impairment which had lasted, or was likely to last, for at least 6 months and which restricted everyday activities’ [24]. Recent refinements by the World Health Organization have seen a much greater focus on activity limitations (difficulties an individual may have in executing activities of daily living) and participation restrictions (problems an individual may experience in involvement in life situations) [25, pp7-10].

The potential for conceptual confusion arises also from the way that responsibility for services is divided in Australia: people who acquired a disability before reaching 65 years of age are generally regarded as the responsibility of the disability services sector, while people who acquire disabilities at older ages are generally the responsibility of the health or aged care services sector [26]. This division tends not to apply, however, for many activity limitations and/or participation restrictions due to chronic health conditions, such as those resulting from severe heart disease, diabetes and chronic renal disease.

Thus, it is not difficult to imagine why the Indigenous community, for whom chronic health conditions make such a major impact, tends not to separate disability and health conceptually.

The pattern of disability among Indigenous people

The main sources of information about the level and types of disability in Australia are the periodic surveys conducted by the Australian Bureau of Statistics (ABS), but these surveys have never included sufficient numbers of Indigenous people to enable any definitive conclusions about disability.

There have been few studies of disability in the Indigenous population, but evidence suggests that the level of disability and handicap among Indigenous people is likely to be much higher – ‘perhaps at least twice as high as’ – that of the total population [27, p223].

This estimate is consistent with a study undertaken in 1991 in the Taree area of New South Wales [28, 29]. The study, which followed the methodology used by the ABS in its national surveys of disability, found that 227 (25%) of the 907 Indigenous people living in households in the Taree area had one or more disabilities [28].^x After adjustment for differences in the age structures of the Indigenous and non-Indigenous populations, the levels of reported disabilities among the Indigenous regular residents of the Taree area were 2.5 times higher for males and 2.9 times higher for females than for males and females in the total Australian population. (It should be noted that these estimates are based on a very broad definition of disability used by the ABS – including impairment of body structure or function, limitation in activities, and/or restriction on participation – much broader than the criteria used in establishing the eligibility for disability support services.) Almost one-fifth (19%) of regular Indigenous residents reported having a disability of the sense organs, such as hearing loss (8.4%) or loss of sight (1.4%) [28]. The next most frequently reported disabilities were ‘disorders of the musculo-skeletal system and connective tissues’ (16%), ‘circulatory system disorders’ (15%), and ‘respiratory system disorders’ (13%). Bearing in mind that the study excluded people living in health establishments and institutions – whose residents would be expected to have higher levels of disability – the levels of disability reported were much higher than those for the total Australian population. The authors noted that the high levels of disability found in the Taree study highlighted the fact that Indigenous people living in other parts of Australia needed to be assessed, so that the full extent of the problem could be gauged and appropriate action taken [28]. To date, there has been no similar study undertaken anywhere in Australia.

Caring for Indigenous people with a disability

As noted above, little is known about how Indigenous groups viewed and addressed disability prior to the commencement of colonisation in 1788. However, based on his review of historical and other sources, Ariotti concluded that people with impairments were ‘treated and cared for no differently from other members of the group or clan’[4, p218]. As Berndt and Berndt noted about people with obvious disabilities (such as ‘lameness, blindness, deafness, cleft palate, boomerang legs (a sequela of long-standing yaws infection), face or limbs eroded by yaws of leprosy’), ‘other things being equal, such a person is cared for in the framework of the kinship system within which he or she has a place which does not rest on physical appearance or physical achievements’[8, p192].

As with other aspects of life in ‘traditional’ times, the group’s particular kinship system provided the ‘blueprint’ to guide its members in their social interactions [8]. Centred around ‘the elementary or nuclear family as the basic kinship unit’, the key group for normal living responsibilities was the clan, ‘a group of people who claim to be descended in one line from the same putative ancestor or ancestress’ [8, p43, p89].

Ariotti’s research found that, for the Anangu, the care of a person with an impairment was the responsibility for the person’s family [3, 4]. This responsibility was emphasised by Elliot: ‘handicapped people are regarded by all as being the responsibility of the family. Handicapped people are not a community issue. An “outsider” will not interfere in the personal business of a family’[9, p6]. Reflecting broad kinship links, the responsibility for care of a person with an impairment (and of old people) lies with the broad extended family (not just the nuclear family) [30, 31]. This type of responsibility is likely to have been the case throughout much (if not all) of mainland Australia and probably Tasmania prior to the direct impact of colonisation, but much less is known about the situation in Torres Strait Island communities.

These complex kinship systems, involving broad family responsibility for the care of people with a disability, varied across Australia, and ‘are still strong in many areas, including urban environments’ [22]. Thus, throughout Australia – in remote, rural and urban areas – most Indigenous people with a disability were, and are, cared for within their extended family.

It is true, however, that not all extended families are able to provide an optimal level of care for the family member with a disability [31]. For example, a review of the needs of aged Aboriginal people in the metropolitan area of Perth concluded that ‘the myth that Aboriginal people are being cared for by their families can lead to their needs being overlooked’ [32]. Many families did care for their elderly, but a breakdown in traditional structures had contributed to areas of neglect. The following reasons why some Indigenous families couldn’t care adequately for their disabled member(s) were identified:

• any Indigenous people live in poverty and often cannot afford to care for more needy members of their group – the added expense entailed in caring for a person with a disability can disadvantage other members of the family;
• people with a disability can be very vulnerable to exploitation in environments where alcohol misuse and family breakdown have occurred;
• the burden of grief and stress carried in many communities can lead to inconsistencies in care;
• family allegiances can make accessing services difficult; and
• many people are disadvantaged by not knowing how to care and what services are available [21].

As well, the proportion of Indigenous people with profound or severe handicaps requiring continual and/or frequent assistance in activities of daily living is higher than that of non- Indigenous people [33]. This has implications for the capacity of families to care for the family member with a disability. Respite care is usually arranged within the family unit or community. This is often the best arrangement, but it can cause some difficulties [21]. It is often difficult to find a suitable carer, especially if support needs are high. There is no community-based training for carers: ‘training for carers may impact positively upon the community’s ability to provide respite care. Training needs to be provided in the communities in a culturally appropriate form’ [34].

The fact that many Indigenous families face other pressing issues – such as health and housing issues – also needs to be taken into account in considering their capacity to care for a person with a disability. This aspect was identified explicitly for Indigenous people in New South Wales [35], but almost certainly applies to Indigenous people across Australia.

The use of disability support services

As a part of the Commonwealth State/Territory Disability Agreement (CSTDA: previously Commonwealth State Disability Agreement (CSDA)), information about the use of disability support services covered by these agreements has been collected on a ‘snapshot’ day each year. On the 2002 snapshot day, 1,670 or 2.5% of CSDA consumers (or 2.7%, excluding the 5% of consumers for whom Indigenous status was not stated) were identified as being of Indigenous origin [26].^xi This was very similar to the proportion (2.6%) of Indigenous Australians in the general population aged under 65 years [36].

Overall, two-fifths (42%) of all CSDA consumers reported needing continual support in ‘activities of daily living’ (self-care, mobility and/or communication) [26]. A slightly higher proportion of Indigenous consumers of a CSDA service reported this need (46%) than did other consumers (42%). Around 15% of Indigenous consumers reported needing no support with activities of daily living (including those who needed only aids) as did 19% of non-Indigenous consumers.

The number of times services were used by Indigenous people was greater than the number that would have been expected if the age-specific use of services by Indigenous people was the same as that of all consumers. However, if one considers the much higher level of disability documented for one Indigenous sub-population [28], then these data suggest that one out of three Indigenous people with a disability did not use the services available [37].^xii If this apparently low level of usage is true, it could be due to differences between the Indigenous and non-Indigenous concepts of disability (and responses to disability) and/or the fact that Indigenous people do not know enough about the services available.

Issues affecting the access by Indigenous people to disability services

There is a wide variety of issues affecting the access of Indigenous people with a disability to support services. Some of these issues relate to specific environments – such as urban, rural and remote locations – but many share commonalities based on cultural, historical and socioeconomic factors. These commonalities are such that a recent House of Representatives’ inquiry into the needs of urban dwelling Indigenous people noted that there was a ‘continuum rather than an absolute distinction between urban and non-urban contexts’ [40, p3].

The commonalities are also of such importance to the uptake of services by Indigenous people that the following sections have been structured according to issues of that type, rather than according to the urban, rural and remote location. This is not to say, of course, that geographic location is not important, but rather that many of the issues faced by Indigenous people are similar regardless of location. Generally, however, the service-related issues faced by Indigenous people living in remote and very remote locations can be characterised by their availability – that is, many services are just not available.^xiii At the other end of the geographic continuum, in the major cities, the characteristic service-related issue faced by Indigenous people is their accessibility – that is, they may be physically available, but, for a variety of reasons, may not be readily accessible [38-40]. These aspects are considered more fully in the following sections.

Cultural, social and other aspects

Different understandings and values

Despite the presence of a wide range of issues affecting the access by Indigenous people to disability services, the differences in values and cultural understandings have been identified as the most significant obstacle to effective service provision [41].

As noted earlier, the concept of disability is not a familiar one to many Indigenous people. Without this understanding, it is not possible for many Indigenous people to identify that the problems they face could be addressed through access to specific services. They may not be able to ask for services, provide feedback or criticise existing services, and exercise their entitlements to assistance.

The great diversity of Indigenous communities across Australia also means that it is difficult for an outsider to understand the belief systems and politics impinging on disabilities in each community, and to develop a working rapport, especially when visits are infrequent [21]. This may result in insensitive and inappropriate interventions, ‘despite positive personal qualities of the service provider’ [21, p142].

In Australia-wide consultations, the National Disability Advisory Council was advised that major barriers to Indigenous people with a disability accessing services were: unwarranted assumptions made by service providers and other professionals; and culturally inappropriate procedures [42].

There is a tendency among service providers and policy makers to underestimate the influence of cultural beliefs and to lack an understanding of the extent of cultural diversity [11]. This can result in cultural disjunction with unsuitable services being offered (for example, culturally inappropriate activity programs in day care centres and major institutions).

The concept of ‘shame’ is a specific cultural factor which has been identified as significant in Indigenous responses to disability [3]. Shame refers to situations where a person has been singled out for any purpose from the security and anonymity provided by the group [43]. There may be considerable concern expressed if the impairment or disability is perceived as likely to cause a ‘shame job’ [44]. Ariotti found that shame may be associated with amputations [3]. Shame has been identified also as having a substantial impact during rehabilitation highlighting for staff ‘gaps in their cultural knowledge of Aboriginal people’ [11, pp43]. Being identified as having a disability has been recognised also as shameful for Indigenous people living in New South Wales [45, 46]. The term handicapped is also considered shameful by some [47]. Regardless of its context, the shame felt by some Indigenous people is likely to be a major impediment to access to disability support services.

Language barriers

Language barriers may exist, especially with older people in remote areas. Overall, one-eighth of Australia’s almost 460,000 Indigenous people reported in the 2001 Census of Housing and Population that they spoke an Australian Indigenous language at home [48].^xiv,xv Of the 81,000 Indigenous people living in very remote areas (including most of the Torres Strait Islands), 55% spoke an Australian Indigenous language at home.^xvi Indigenous people in other parts of Australia have developed their own particular varieties of English – Aboriginal English.^xvii The use of Aboriginal English is very common among urban and metropolitan Indigenous people as well as among those living in rural and remote areas [49].

There are believed to be over 100 Aboriginal and Torres Strait Islander languages still being used by particular communities, but most of the original 250 Aboriginal languages and cultures have died out [50].

Unless translators are used, language presents a major barrier for people who speak English as a second language. And, while Aboriginal English and Standard Australian English are usually mutually intelligible, there are significant differences that may lead to misunderstandings between service providers and Indigenous people [40].

Language barriers, different understanding of the same word, the use of jargon by service providers, and different life conceptions may lead to misunderstanding and ineffective service provision [51]. Some of the words associated with disability service provision are often misunderstood. For example, ‘rehabilitation’ is confused with environmental, prison or alcohol rehabilitation [21, 52], and disability is often taken to mean sickness.

Generally, factors such as not speaking English and lack of literacy are more acute in remote areas and interfere more with accessing and delivering services. This is particularly the case with government programs, which tend to have complex bureaucratic requirements, provide sometimes inappropriate materials, and rely on mail for contact.

Socioeconomic circumstances

The 2001 Census of Housing and Population provided a number of indicators of the extent of the socioeconomic disadvantage experienced by Indigenous people [48]:

• the mean equivalised gross household income for Indigenous people was $364 per week, compared with $585 per week for non-Indigenous people; income levels generally declined with increasing geographic remoteness, but the mean equivalised income in outer regional areas was slightly lower than that in remote areas;
• Indigenous households were larger than other households (3.5 compared with 2.6 people per household); the average number of people per household ranged from 3.2 in major cities to 5.3 in very remote areas; 45% of all multi-family Indigenous households were located in very remote areas (where 22% of households were multi-family); an extra bedroom was required in almost 16% of Indigenous households overall, and in 46% of those in very remote areas;
• overall, 70% of Indigenous households had a registered motor vehicle owned or used by them (or parked at or near their dwelling), compared with 84% of non-Indigenous households; only 51% of Indigenous households in very remote areas owned or had use of a registered motor vehicle.

In terms of take-up of disability support services, poverty has been identified as an inhibiting factor, even when services are free [21, 50, 53].^xviii Poverty presents obstacles to obtaining a service – these are often not recognised by service providers and/or misinterpreted as stereotypic characteristics, cultural differences or personal lack of commitment. Poverty may affect Indigenous people in a number of ways, including [16, 55-58]:

• they may not be able to afford the cost of services, some of which are provided privately;
• they may have restricted access to transport, and hence to services;
• they may not be able to visit relatives in institutions and hospital;
• they may have limited resources for purchase of clothing, which may inhibit presentation for services and/or work;
• they may not be able to carry through recommendations, such as purchase of equipment;
• they may be more susceptible to family difficulties (arising from financial difficulties);
• they may not have the stable background and supports required to take advantage of a program or service; and
• they may be more vulnerable to exploitation.

The fact that poverty may lead to incarceration also has implications for accessibility to some disability support services. For example, a criminal record can compound problems for disability employment agencies. This is a problem for anyone who has a disability and a criminal record, but it is especially significant for Indigenous people due to the high rates of incarceration.

Even though substantial, the differences noted above between Indigenous and non-Indigenous people in motor vehicle ownership don’t truly reflect the much greater transportation limitations experienced by Indigenous people. As noted below under ‘Transport problems’, the limited access of Indigenous people to motor vehicles has major implications for their capacity to access disability support services. This is true for most Indigenous people, wherever they live, but is particularly so for those living in remote communities.

Other aspects

Other cultural and social issues that need to be considered in the delivery of disability services to Indigenous people include:

• mobility between communities – a ‘vital characteristic of contemporary Aboriginal life’ [59, p195] – has substantial implications for the provision of services, including disability services [59, 60]. The mobility of Indigenous people is much greater than that of non-Indigenous people in most areas of Australia, but the pattern of Indigenous mobility differs between remote and other areas – mobility in remote areas is more of a short-term nature for social and economic reasons, whereas that in urban and rural areas more generally involves a change of residence [40, 59-62]. Among the Anangu, mobility was noted to result in fragmentation and instability in the care of older people with a disability [3];
• the use of alcohol and other substances can contribute to family and community dysfunction. This may lead to neglect of people with a disability and be a barrier to service provision because some agencies will not accept clients who have a drinking problem [21]. The issues may need to be dealt with concurrently. Furthermore, alcoholrelated distress within a family can impact on a client’s ability to follow through with a program; and
• family feuding – instances have been reported of people choosing to use services in another town due to feuding family members being involved in the local service [21].

Lack of knowledge about disability rights and services

Lack of knowledge of entitlements, rights and powers of appeal has been consistently identified as a barrier to the utilisation of disability support services [16, 17, 21, 46, 53, 63, 64].

People are often unaware of the services available to them. This is true of non-Indigenous people but is further compounded in the Indigenous population by factors such as communication difficulties, distance and lack of understanding about the Western concept of disability. Considerable client confusion about which agency provides what service has been identified (for example, a disability services officer may be asked about a social security or housing issue) [21]. Apart from confusion about what disability is, this relates to a more holistic view of life circumstances by Indigenous people than the segmented Western view.

There is a vital need for provision of information [9]. Lack of culturally suitable reference material has been identified as a reason for lack of knowledge of services [46, 57, 63]. A pamphlet showing non-Indigenous people attending physiotherapy in the metropolitan area, for example, has little significance to Aboriginal people living in remote parts of the country, such as the Kimberley region of WA [21].

A lack of knowledge of the types of services available compounds the weak position of Indigenous clients in remote areas and ‘operates as a major barrier to the development of responsive service delivery’ [55, p18].

A study in WA on the use of advocacy services by Indigenous people with a disability found a complete lack of awareness of advocacy or advocacy agencies among participants [65]. Aboriginal ‘shyness’, poverty, effects of long-term discrimination, powerlessness, the wider Aboriginal background of abuse, not having Aboriginal workers in advocacy agencies, and tensions between Aboriginal groups were identified as barriers to accessing advocacy. There is a need for involvement of Indigenous peoples in all aspects of community care, including meaningful, early and ongoing participation in policy development and planning [66]. During consultations for the 1999 review of the National Disability Advocacy Program, the Steering Committee was advised that:

Aboriginal communities accept advocacy services best when given the opportunity to nominate someone from their own community to act as an advocate; however that advocate may not be able to access other communities; an advocacy model needs to be developed for working with Aboriginal communities; current advocacy models are culturally inappropriate for working with Aboriginal communities. In Aboriginal communities, advocates must take far greater account of family and extended family members; and (there are) insufficient resources to provide specialised services although they may be justified in Aboriginal communities [67, p25).

Drawing on this advice, the Committee recommended that strategies to address the needs of Indigenous people with a disability should be developed in consultation with appropriate advocacy services [67].

Limited access to services^xix

The provision of health and human services is generally excellent in Australia’s major urban areas, but there are significant problems in ensuring that these services are available for people living in rural and remote parts of the country. Generally, the availability of services – particularly of specialised services (such as disability services) – decreases with distance from major urban areas.^xx Thus, issues about the availability of disability support services are likely to be of particular concern for people living in the more remote parts of Australia. The two broad issues relating to the provision of services to isolated areas of Australia are: (1) costs; and (2) the range of services.

Cost of services

The costs involved in providing services generally increase with increasing distance from major urban areas. The factors contributing to higher costs include: labour-related costs; freight costs; airfares and travel allowances; travel-related subsidies; professional infrastructure; and commercial isolation [68]. An indication of the extra costs involved can be gauged from the experience of people operating a service in the AP Lands of north-western South Australia: ‘It costs between $1 and $1.30 for a litre of diesel and we use a lot of fuel, covering an area which is larger that the state of Tasmania. Food costs up to twice as much as it does in Adelaide. We pay freight on all items brought in. Our phone bills are bigger. The list goes on. The cost of bringing in professional people is astronomical. It means, for example, chartering planes and paying for days rather than hours of their time’ [69].^xxi

Availability of specific services

Reflecting the relatively small number of clients within the specific geographic regions, it is difficult to provide some specific services, including:

• therapy services – follow-through with programs is difficult due to the low number of therapists [21, 55];
• home help and personal care [47];
• respite – lack of options for appropriate respite is an issue which has been often identified. This is particularly so for Indigenous families living in remote areas [21, 33,34, 70], but is also a problem for those living in urban and rural areas [20, 21, 45].
• education – disability among children in remote areas is compounded by their difficulty accessing education. The general educational disadvantages experienced by students in rural and remote areas (availability, accessibility, affordability and acceptability) were particularly true for children with disabilities [71, 72].

Limited access to services

Accessing services

Even if disability services are available, such as in urban areas, there may be issues relating to the actual accessibility of these services. These accessibility issues reflect both the attitudes of Indigenous people to mainstream services and aspects about the services themselves.

Attitudes to mainstream services

Indigenous people may be reluctant to use mainstream services [16, 21, 56, 73]. Many are wary of using services due to past government policies that separated children, people with severe disabilities and frail elderly people from their families.

Aboriginal people have experienced a long history of their children being taken away from them and placed into institutions. This institutionalisation and the policies of cultural decimation have led to generations of physical, mental and intellectual disabilities [46, p13].

More generally, many Indigenous people ‘have had some degree of misunderstanding or discrimination when dealing with officials and/or their representatives’ [51, p3]. As a result, they fear that they will be abused or shamed. Others are reluctant to access services through fear of being exploited [21].

Establishing need for services

Service providers have expressed doubts about the relevancy of their services. They say it is difficult to gauge the need for a service in the absence of a request for it [21].

It is difficult to:

• determine the level of need for a range of reasons;
• survey people with a disability living in remote areas;
• survey people who are very mobile; and
• survey people who find the concepts being surveyed irrelevant and/or hard to understand.

‘It may be that Aboriginal people are ignorant of service options, they may be uncertain of their rights to access such services, or lack the skills or confidence to advocate for themselves before the service bureaucracies. Whatever the actual case for particular individuals, the net result is a lack of pressure applied to policy officers and service provider agencies to address circumstances of need’ [47].

Transport problems

Transport issues have been consistently identified as a problem in accessing services [16, 21, 56, 74, 75]. The kinds of transport problems include:

• low levels of vehicle ownership, and relatively poor condition of many vehicles;
• inadequate or no public transport facilities for remote area residents;
• outdoor mobility problems due to rough terrain;
• difficulty for service providers having to access communities during periods of very heavy rains and flooding; and
• lack of money prohibiting access to transport.

Bureaucratic requirements and procedures, including referral and service continuity issues

According to service providers, many Indigenous people are not referred to them. Many services rely on referral from a doctor, and Indigenous people often tend not to use doctors unless there is a crisis. As well, service providers in WA commented that doctors are often unaware of disability support services in their area [21].

When Indigenous people are referred, assessment procedures may be inappropriate [20]. For example, there can be difficulties in providing a suitable service due to restrictive and culturally inappropriate eligibility criteria, and conditions of the agency. This may mean that some Indigenous clients do not persevere past the initial stage [21].

Indigenous clients may have difficulty filling in time sheets (as for Attendant Care) and the forms associated with accessing a service. The appointment notification – be it verbal or written – may not be fully understood. Appointment information may be passed on to a family or community member with whom communication with the client is not appropriate.

There are a number of issues related to maintaining service provision once initial contact has been made, including the relatively high mobility of many Indigenous people and the procedures used by mainstream services in interacting with clients [21].

Service providers have commented that Indigenous clients often move away without notifying the service – this may lead to fragmentation and instability in the care of elderly people with a disability [3], and to lack of follow-through with programs [73].

The procedures used by mainstream services, generally reflecting the ‘dominant social and economic circumstances of the time and place from which and for which they were written’, are often not appropriate for Indigenous people [76, p2]. For example, the standard way of communication with clients – by post – may not always work for Indigenous people. Many Indigenous people have to rely on a post office box, and they may not check their mailbox frequently and thus miss receiving appointments on time. Based on the experience of social security administration in the Northern Territory, the development of non-standard procedures – including innovative options for arranging follow-up – may be necessary to ‘make things work’ for Indigenous people living in remote areas [76, p4].^xxii

Lack of coordination between agencies and levels of government

Insufficient (or lack of) coordination between services, agencies and levels of government adversely affects the ability of Indigenous people to access services [63, 77-80]. Sara and Couzic comment that the Federal government’s policy of self-determination and selfmanagement for Indigenous people remains a ‘pipe dream’ because service provision continues to be largely uncoordinated and ad hoc, with little involvement of Indigenous clients (or their carers) [78].

Workforce issues

Recruitment and retention of staff

The recruitment and retention of appropriately trained staff, specifically therapists, has been identified as a major problem in many areas outside major urban centres, but particularly in remote areas [47, 55]. This can result in:

• complete gaps in availability of specific therapy services;
• failure of allied health therapists to deliver on many of their core goals and tasks;
• poor continuity of care and therapy follow-up;
• a limited ability to support family carers;
• an inadequate capacity for training of the local workforce in aged/disability care; and
• an inability to provide timely services for clients in need of treatment and rehabilitation [55]

As well, 60% of allied health therapists working in remote areas of the Northern Territory felt their professional support was not adequate, and that they received at most minimal support from their professional associations in their work with Indigenous people [47].

Together, these factors contribute to a relatively high turnover of staff, often with limited or no hand-over to new staff [21]. This impacts on continuity of care, and often results in the loss of valuable informal knowledge [47, 55]

Inadequate training and support for service providers

Despite a well-documented need for cross-cultural training [20, 21, 47], the huge distances and the cost involved in providing services in rural and remote areas makes training provision and supervision difficult. A survey of allied professionals working in rural and remote areas of the Northern Territory found that 60% felt that they were not receiving adequate professional support and nearly half were unhappy with the level of supervision [47]. Eighty six percent rated their work stress as higher than average and more stressful than any job they had held previously. Due to difficult conditions, isolation, lack of support and distance from family and friends, there is high staff turnover. When staff are not replaced immediately, loss of information and transferable experience occurs due to lack of hand-over. As well, many new staff are unaware of the limited facilities and support mechanisms that are available in many Indigenous communities [53].

Insufficient numbers of Indigenous staff

The need for Indigenous services and the employment of Indigenous staff is a strong theme in the literature [16, 56, 65, 75]. The people who best understand Indigenous circumstances and culture are Indigenous people. Many Indigenous people prefer to access services that have Indigenous providers [65, 75]. The preference for Indigenous staff is a strong finding, but some Indigenous people prefer to deal with a non-Indigenous person (due to complex interfamilial disputes, for example).

Valuable insights about the issues faced by Indigenous people employed in the disability field were obtained from research in Western Australia in the early 1990s [21], in which the following problems were identified:

• Conflicting demands between the job and responsibilities to the community. For example, Aboriginal service providers were often put in the difficult position of being asked for transport or money when to provide these may conflict with agency regulations. On the other hand, to refuse may undermine credibility with the community and their own values;
• Services were spread too thinly. Because of the complex and difficult nature of the problems faced by their client group, the work was intensive at an individual level and they often had large areas to service, and other work responsibilities besides case work (such as staff training – formally and informally – and meeting their own training needs);
• Insufficient Aboriginal staff to meet the need;
• Aboriginal staff were expected to be experts on every aspect of Aboriginality. There are commonalities, but the Aboriginal population of Australia is diverse – Aboriginal workers commented that they are expected to be experts on all aspects of Aboriginal culture, history and welfare. Aboriginal staff may have been raised away from their families and culture, which makes this even more difficult;
• Expertise was not valued. Because Aboriginal staff have often been employed without formal qualifications, they have been employed on lower salaries and with lesser work conditions. This occurs despite having more difficult workloads, more difficult working conditions and, in some cases, a wider brief than colleagues working with non-Aboriginal clients;
• Discrimination within the workplace and in the course of carrying out their duties. One worker described being regularly pulled over by police when he was driving the work car. The assumption was that Aboriginal people don’t drive expensive cars – he must have stolen it. Structural obstacles existed to professional advancement. Because of lack of formal qualifications Aboriginal staff were not able to apply for promotion, but the structures and supports were not given to allow them to obtain the qualifications. Apart from structural obstacles, racism existed;
• Employment expectations were unrealistic. In an outcome-driven environment, they were expected to reach targets that were difficult because of their clients’ complex backgrounds;
• Unaware of rights with regard to appeal and workers’ compensation; and
• Personal cultural responsibilities were not recognised. One worker said that he had taken a lot of time off work due to family responsibilities and was warned that his employment would be terminated if he took more time off. When a family member died he was expected as an Elder to assume responsibilities, but, in fear of losing his job, he did not go to the funeral. Following this he was shamed and heart-sick. He became so depressed that he was unable to continue working and walked out of the job, taking none of the entitlements accruing to someone who had worked in the public service for many years.

Racism

Racism has been identified as an issue, both in the community and by service providers [21, 35]. For example, it has been noted in referring to brokerage services that ‘some services don’t want to be accessed by Aborigines’ [21].

More generally, a recent survey of the attitudes of non-Indigenous people towards Indigenous people in two diverse communities in Western Australia noted:

Our results support previous findings regarding the declining prevalence of oldfashioned prejudice, but indicate that prejudice is still commonplace. Additionally, the findings – especially those concerning false beliefs – suggest that the public should be given more information about Aboriginal history and issues, and that other strategies be put into place to address the problem of prejudice [81].

Many disability services rely on volunteer staff to augment their services. With emphasis on de-institutionalisation and home care, volunteers are an important source of care, but it was noted by Western Australian service providers that some volunteers were reluctant to deal with Aboriginal people and others have paternalistic or uninformed ideas about assisting them [21]. Service providers who seek to place Indigenous people in employment note that the job is difficult due to employers with racist attitudes. This appears to be more of a problem in regional areas where options are more restricted than in urban areas.

Racism can occur at all levels of service provision. It can range from misinformation, fear, and stereotyping to exclusionary racism. This has an impact depending on the model of service delivery – for example, a senior bureaucrat in a hierarchical structure can block service provision at a grass-roots level.

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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83. Madden R (1998) Disability definitions and concepts: working towards national consistency. In: Australian Bureau of Statistics and Australian Institute of Health and Welfare, ed. Indigenous disability data – current status and future prospects: report on proceedings of the Canberra workshop, April 1988. Canberra: Australian Institute for Health and Welfare:58-63

84. Australian Institute of Health and Welfare (2002) Australia’s Health 2002. The eighth biennial report of the Australian Institute of Health and Welfare. (AIHW Cat. No. AUS 25) Canberra: Australian Institute of Health and Welfare

85. Commonwealth State/Territory Disability Agreement (2004) Agreement between the Commonwealth of Australia and the States and Territories of Australia in relation to disability services. Retrieved 25 March 2004 from http://www.facs.gov.au/internet/facsinternet.nsf/VIA/cstda/$File/cstda_2002-2007.pdf

86. Steering Committee for the Review of Commonwealth/State Service Provision (2004) Report on government services, 2004. Canberra: Productivity Commission

87. Australian Institute of Health and Welfare (2002) Disability support services 2002: First national results on services provided under the CSDA. from http://www.aihw.gov.au

88. Australian Disability Services (1993) Service Consumer Profile Report. Canberra: Commonwealth Department of Human Services and Health

89. Commonwealth Department of Family and Community Services (2003) National Disability Advisory Council. Retrieved 5 December 2003 from
http://www.facs.gov.au/internet/facsinternet.nsf/aboutfacs/programs/disability-ndac.htm

90. Physical Disability Council of Australia (2004) Australian Federation of Disability Organisations (AFDO). Retrieved 17 January 2004 from http://www.pdca.org.au/AusFedOfDisability.html

91. Howson CP, Fineberg HV, Bloom BR (1998) The pursuit of global health: the relevance of engagement for developed countries. The Lancet;351(9180):586-590

92. Aboriginal and Torres Strait Islander Commission (1999) As a matter of fact: answering the myths and misconceptions about Indigenous Australians. Retrieved 5 March 2004 from http://www.atsic.gov.au/news_room/As_a_Matter_of_Fact/matterfact.pdf

93 Amery R, Bourke C (1998) Australian languages: our heritage. In: Bourke C, Bourke E, Edwards B, eds. Aboriginal Australia : an introductory reader in Aboriginal studies. Second ed. St Lucia, Qld: University of Queensland Press

94 Australian Bureau of Statistics (2001) Information paper: ABS Views on Remoteness, 2001. (Cat. no. 1244.0) Canberra: Australian Bureau of Statistics

95. Australian Bureau of Statistics (2001) Information paper: Outcomes of ABS views on remoteness consultation, Australia. (Cat. no. 1244.0.00.001) Canberra: Australian Bureau of Statistics

96. New York Academy of Medicine (2002) What is grey literature? Retrieved 9 December 2002 from http://www.nyam.org/library/greylit/whatis.shtml

97. New York Academy of Medicine (2002) Grey Literature Report. Retrieved 9 December 2002 from http://www.nyam.org/library/greylit/glrindex.shtml

Abbreviations

 

ABS	Australian Bureau of Statistics
AHT	Allied health therapist(s)
APAIS	Australian Public Affairs Information Service
ARIA	Accessibility/Remoteness Index of Australia
ATSIC	Aboriginal and Torres Strait Islander Commission
CBR	Community-based rehabilitation
CDEP	Community Development Employment Project
CINAHL	Cumulative Index to Nursing and Allied Health Literature
CRS	Commonwealth Rehabilitation Service
CSDA	Commonwealth State Disability Agreement
CSTDA	Commonwealth State/Territory Disability Agreement
DSC	Disability Services Commission
ECU	Edith Cowan University
HACC	Home and Community Care
ICF	International Classification of Functioning, Disability and Health
ICIDH	International Classification of Impairments, Disability and Handicap
IDAR	Indigenous Disability Action Research Project
NDAR	National Disability Advocacy Review
NHMRC	National Health and Medical Research Council
WA	Western Australia
WHO	World Health Organization

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Appendix

The nature and assessment of disability

Concepts of disability

Concepts of disability are complex and have changed over time [37]. There are historical, social, legal, and philosophical influences on the perception of disability, and further complexities in spiritual interpretations. The experience of disability is unique to each person, but there are common elements. The identification of these elements is essential for providing support, enhancing community understanding, and minimising marginalisation. There are obvious needs:

• to address the factors contributing to disability;
• to make interventions where appropriate;
• to overcome barriers to participation in all areas; and
• to improve access to disability support and other relevant services.

Various conceptual models have been used to direct services for disability—medical, psychological, and sociological models of disability, all of which have been criticised to some degree [91]. The labelling of people, in medical and rehabilitation models, as people with a disability can have negative consequences: they may feel ashamed of their condition and may be stigmatised and looked down upon by their community. In sociological models, disability is viewed within a wider social context and people with a disability may be considered to be a minority group—with the associated possibility of being oppressed. Recognition of oppression has led to an independent living model, through which people with a disability have demanded independence and responsibility.

Generally, social models of disability have proven to be the most valuable, but many still rely on a distinction between what is ‘normal’ and what is ‘not normal’. As this distinction is itself socially defined, models relying on it are open to criticism, and it has been argued that a universal approach is preferable [82]. Universalism decreases limitations for people with disabilities and opens their scope of opportunities, allowing them to live as ‘normal’ a life as possible. It has been argued that universalism serves people with disabilities more effectively than a civil rights or a ‘minority group’ approach [82].

The nature of disability

There are generally five broad categories that are currently used to define the type of disability that a person has. These categories are, however, multi-dimensional, and include people with varying degrees and severities of a particular condition/s.

Physical disabilities are those that result in restricted activity due to decreased mobility and manipulation, and can include conditions of the brain, spinal cord, muscular, nervous and respiratory systems [71].

Intellectual disabilities refer to conditions caused either by genetic disorders or infections, and can result in limitations and slowness primarily in general learning ability as well as communication and information retention [71].

Psychiatric disabilities are the most varied in terms of their scope and effects. They usually include people with underlying medical conditions such as schizophrenia, manic depression, phobias, and neuroses [71].

Blind or vision-impaired disabilities can affect visibility to varying degrees, from a total absence of vision, to useable vision [71].

Deaf or hearing-impaired disabilities account for those who have varying degrees of hearing impairment. In the strictest sense, individuals usually have no useable hearing and communicate through Auslan (Australian Sign Language). Individuals with less acute forms of hearing impairment usually communicate through oral [71].

Defining disability

Although there are difficulties in conceptualising disability, there is a need for an agreed definition of ‘disability’ for ‘the collection and analysis of meaningful data on people needing services, the services they receive and the outcomes from services, and for ensuring that these data are in some way comparable for different population groups’ [83]. To that end, the Disability Data Reference and Advisory Group was established in 1996 to advise the Australian Institute of Health and Welfare (AIHW) on how generally to improve, harmonise, and standardise data collections (see Box) [83]. The Group also acted as an advisor and consultant in its role as an Australian reference group for the development of the World Health Organization’s (WHO) International Classification of Functioning, Disability, and Health (ICF), a revision of the International Classification of Impairments, Disability and Handicaps (ICIDH). The process of redevelopment and testing took several years and involved the WHO and its Collaborating Centres, which included the AIHW [26]. As part of the testing in Australia, the AIHW sponsored a test of ICF concepts in two Indigenous communities in the Northern Territory [13].

Box Definition of disability The new International Classification of Functioning, Disability, and Health (ICF) is a conceptual framework for the understanding of functioning and disability and includes the following definitions: Disability is the umbrella term for any or all of an impairment of body structure or function, limitation in activities, or a restriction on participation. Body functions are the physiological functions of body systems (including psychological functions). Body structures are anatomical parts of the body, such as organs and limbs and their components. Impairments are problems in body function or structure, such as significant deviation or Activity is the execution of a task or action by an individual. Participation is the involvement of an individual in a life situation. Activity limitations are difficulties an individual has in certain activities. Participation restrictions are problems an individual experiences in involvement in certain life situations. Environmental factors make up the physical, social, and attitudinal environment in which people live and conduct their lives. These factors are classified as either facilitators or barriers (both on a 5-point scale) to indicate the effect they have on a person’s functioning. Source: AIHW (2001) [83]

The ICF uses the concept of ‘participation restriction’ instead of ‘handicap’. The neutral terms, which include all people, not only those with a disability may therefore be seen as an improvement on the terms used previously. The revised classification system focuses on inclusiveness and reflects the universal approach discussed by Bickenbach and colleagues [82].

Disability support services

It is generally accepted in Australian society that people with disabilities may need assistance from others to continue participating in all aspects of community life. Different types and varying levels of disability require different levels of care and the use of different types of services. Daily activities are categorised according to self-care (bathing, dressing, eating); mobility (movement, public transport); and communication (understanding, speaking, etc) [84].

The Australian context of disability support services

The planning, policy setting, and management of disability support services in Australia is undertaken within the framework of the Commonwealth State/Territory Disability Agreement (CSTDA) [85]. The current CSTDA, which covers the period 2002-2007, is the third such agreement (the previous agreements were known Commonwealth State Disability Agreements (CSDAs)).

The CSTDA agreement, which is binding between the Commonwealth and State and Territory governments, outlines the roles and responsibilities of each in their jurisdictions [85]. The agreement provides both a national framework for disability services enabling the contribution of funds by Commonwealth, State and Territory governments, and a bilateral agreement that provides for strategic activity between the Commonwealth and individual States and Territories.

In acknowledging the principles and aims of the Commonwealth Disability Services Act 1986, the Disability Discrimination Act, and complementary state and territory legislation,^xxv the agreement prioritises access to generic services by people with a disability; the development of across-government linkages;^xxvi strengthening the capacity of individuals, their families and carers; improving accountability, performance reporting and quality; and putting in place long-term strategies that respond to, and manage the demand for, specialist disability services [85].

The CSTDA is aimed primarily at people aged less than 65 years, with people older than that age only being eligible for services if their disability had been manifest before they turned 65 years [86].^xxvii

The specialist disability services covered by the CSTDA comprise accommodation support, community support, community access, respite, employment, advocacy, information and print disability [85]. The agreement does not cover services provided as veterans’ entitlements or those with a specialist clinical focus. Responsibility for advocacy, information and print disability services is shared by the Commonwealth and the States and Territories, as is research and development (the Commonwealth is expected to provide ‘national leadership and coordination’ in this area). The Commonwealth has responsibility for specialist disability employment services, and the States and Territories for the specialist disability services in the areas of accommodation support, community support, community access, and respite.

Accommodation support provides accommodation and housing in the form of institutions, residential, hostels, group homes, attendant care, outreach support, and alternative family placement. It is the largest support service accessed by all people with a disability [87].

Community support and access services are equally accessed and in some areas there appears to be some overlap in the services that each provides. Community support however, can be viewed largely as being based on a therapeutic and holistic approach. It provides early childhood intervention, recreation, holiday programs, therapy, case management, behaviour interventions, counselling, brokerage, self-help, and resources [87]. Community access on the other hand, provides services to continue education, post-school options, training, independent living, day programs, and social events [87].

Respite services provide care for those profoundly restricted by their disability on a temporary basis in that their carers may be given a break. Respite services can be in the form of own home, centre, host, peer, and flexible or combination respite support [87]. It is the least accessed of all support services, as many individuals with a profound level of disability are usually institutionalised (as represented in accommodation support figures) [87].

As well as the specialist disability employment services provided by the Commonwealth, individuals seeking supported employment and sheltered employment options are assisted by the employment sector of state employment agencies [87, 88].

Apart from generic community services, other important services for people with a disability include income support and rehabilitation, neither of which is covered by the CSTDA. Income support for people with a disability is provided by the Commonwealth, mainly in the form of Disability Support Pensions. Rehabilitation services are provided through a number of mechanisms, including CRS Australia (known previously as the Commonwealth Rehabilitation Service) and a variety of State and Territory agencies.^xxviii

Performance reporting will be based mainly on data from the CSTDA National Minimum Data Set (developed by the National Disability Administrators in partnership with the AIHW) [85]. This will form the foundation for a publicly available account demonstrating achievements ‘in the delivery of specialist disability services and national progress in implementing agreed national policy priorities’ [1].

Consumer-focussed, government and non-government service providers represent people with a disability in the direction and implementation of disability policy in Australia, and the Commonwealth, State and Territory governments share responsibilities for funding advocacy, information and research services [85].

The National Disability Advisory Council (NDAC), appointed by the Commonwealth Minister for Family and Community Services, acts on Ministerial referrals about matters pertaining to people with a disability [89]. The Council gives relevant advice and information, promotes opportunities for consultation and discussion between the Commonwealth and clients, their carers and service providers, and advances matters that it thinks warrant further investigation.

Under the terms of the CSTDA, the Commonwealth also provides financial support for State and Territory advisory bodies [85]. The national, state and territory advisory bodies are expected to consider issues such as the CSTDA, deinstitutionalisation (and the subsequent need for community housing); employment opportunities and income support; appropriate health care; associations between ageing and disability; and access to education and training.

In 2001, the Commonwealth decided to support the establishment of an Australian Federation of Disability Organisations to become an advisory voice for people with a disability across Australia [90]. In addressing its task of setting up this new organisation, the eight leading disability organisations set up a Federation Working Party, which included a representative from the Interim National Indigenous Disability Network (INIDN). It is anticipated that the first meeting of the Federation’s Board will take place in 2004.

In relation to information about disability, the Australian Bureau of Statistics (ABS) is piloting a question on disability for the 2006 population census. It is anticipated that this should improve the quality of information about relatively small groups of people in smaller geographical regions (such as Indigenous people living in remote areas).^xxix

In an effort to promote a consistent and constructive approach in service provision to people with a disability the Australian Institute for Health and Welfare (AIHW) has developed an Australian ICF User Guide, and has included ICF concepts in the CSTDA national minimum data sets (NMDS) [26]. The incorporation of the ICF definitions and concepts in national data collections is seen to advantage both providers and clients by increasing understandings about roles and responsibilities. For instance, the redeveloped CSTDA NMDS recognises the importance of primary carers, especially those who are ageing, and the mutual support evident among people with a disability.

 

Preface Acknowledgments Introduction The context of Indigenous health Births and pregnancy outcome Mortality Hospitalisation Selected health conditions Disability Health risk factors Health expenditure Concluding comments Glossaries Endnotes References Abbreviations

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This review is also available as a downloadable PDF using Adobe Acrobat.

Suggested citation:  Thomson N, Burns J, Burrow S, Kirov E (2004) Overview of Indigenous health 2004. Australian Indigenous HealthBulletin;4(4): Reviews 1. Retrieved [access date] from http://www.healthinfonet.ecu.edu.au/html/html_bulletin/bull_44/reviews/thomson/reviews_thomson_1.htm

 

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• Preface
• Acknowledgments
• Introduction
  • Limitations of the sources of Indigenous health information

Preface

This overview has been prepared by the Australian Indigenous Health InfoNet as a part of our efforts to contribute to improvements in Indigenous health by making relevant, high quality knowledge and information easily accessible to policy makers, health service providers, program managers, clinicians, researchers and the general community.

Research for the overview involved the collection, collation, and analysis of a wide range of relevant information, including both published and unpublished material. Sources included government reports, articles in journals and other periodicals, books and book chapters, reports from specific studies and projects, and dissertations and theses.

The overview draws on information from the main administrative data collections (such as the birth and death registration systems and the hospital inpatient collections) and national surveys. Information from these sources has been published mainly in government reports, particularly those produced by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health and Welfare (AIHW).

Importantly, the overview draws also on a wide variety of other information sources, including registers for specific diseases and other conditions, regional and local surveys, and numerous epidemiological and other studies examining particular diseases, conditions, and health determinants. Information from these sources is disseminated mainly through journals and similar periodicals, or in special reports (such as the annual reports of the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA)).

A number of sections include the results of our own analyses of data obtained from a variety of sources. For example, detailed information about mortality for a number of conditions was derived from information obtained from the AIHW Mortality Database. Similarly, estimates of the age-adjusted incidence of end-stage renal disease were made using notification data provided by ANZDATA.

The initial sections provide information about the Indigenous population, the context of Indigenous health, and various measures of population health status. Most sections about specific health conditions comprise an introduction about the condition and evidence of the current burden of the condition among Indigenous people. A final section summarises the current details about expenditure for Indigenous health. (To assist readers who may not be familiar with some of the technical aspects about the analysis of health data, a glossary is provided.)

Further information about the aspects summarised in this overview are included in the corresponding sections of the Health InfoNet ‘s website (www.healthinfonet.ecu.edu.au).

We welcome your comments and feedback about the overview.

Neil Thomson, Director, on behalf of the Health InfoNet team

Acknowledgments

Particular thanks are extended to:

• the Australian Institute of Health and Welfare, which provided some of the mortality data used in the special analyses included in this overview. Krys Sadkowsky and Paul Jelfs were particularly helpful in the provision of these data;
• the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA), which provided data on new cases of end-stage renal disease. We are particularly grateful to Stephen McDonald for the provision of these data, and for his advice in its analysis;
• the Western Australian Cancer Registry for details of cancer incidence and mortality in that State. We are extremely grateful to Dr Tim Threlfall, the Registry’s Senior Medical Officer, who provided expert guidance in the selection of cancers to be analysed, and, most importantly, extracted and analysed data from the Cancer Registry’s database;
• other staff of the Australian Indigenous Health InfoNet for their support and encouragement in the preparation of this overview; and
• the anonymous reviewers of this overview for their constructive comments.

Finally, special thanks are extended to the Office for Aboriginal and Torres Strait Islander Health within the Australian Department of Health and Ageing for the support that enabled expansion of the Health InfoNet ‘s previous Overview of Indigenous health to this form and the funds for production and distribution of a hard-copy version.

Introduction

This overview of Australian Indigenous health draws largely on published information, some of which has been re-analysed to provide clearer comparisons between Indigenous and non-Indigenous people (for more details of statistics and methods, readers should refer to the original sources). Very little information is available separately for Australian Aboriginal people and Torres Strait Islanders, so no attempt has been made to provide separate summaries for these two sub-groups of the Indigenous population. In addition to information about health status, this overview includes a brief paragraph about health expenditure on Indigenous health.

Limitations of the sources of Indigenous health information

Indigenous health information is limited by relatively low levels of identification of Indigenous people in the vital statistics and administrative data collections, except those relating to births (in most jurisdictions) and to deaths in the Northern Territory (NT) [1]¹. In other administrative collections, reasonably reliable information is available for Western Australia (WA), South Australia (SA) and the NT, but there is substantial room for improvement. Also, the need for information at community level was identified in consultations undertaken for the development of the National Aboriginal and Torres Strait Islander Information Plan [2]². Survey information, such as that collected nationally by the Australian Bureau of Statistics (ABS), for example, the 2001 National Health Survey (NHS), is valuable, but it is limited by the relatively small numbers of Indigenous people surveyed. It is also difficult to compare survey findings because of differing sample sizes, methodologies and seasonal variations in some health conditions.

Statistics on hospitalisation provide some insights into ill-health in the population. They are, however, quite a poor reflection of the extent and patterns of treatable illness in the community, since they represent only illness that is serious enough to require hospitalisation. Even then, the comparability of hospitalisation statistics is limited by many factors, including State/Territory and regional variations in admission policies, and differential geographic accessibility of hospitals. Importantly, the incompleteness of Indigenous identification in most jurisdictions means that comparisons of Indigenous and non-Indigenous hospitalisation, including those presented in this overview, under-estimate the true difference.

The context of Indigenous health

• Indigenous population
• The socioeconomic context

Indigenous population

In the 2001 Census of Housing and Population, 410,003 Aboriginal and Torres Strait Islander people were counted [3]. Based on this figure, the ABS has estimated that there were 458,520 Indigenous people living in Australia at 30 June 2001 [4]. New South Wales (NSW) had the largest Indigenous population with 134,888, followed by Queensland (125,910), WA (65,931), and the NT (56,875) (Table 1). The NT had the highest proportion of Indigenous people among its population (28.8%) and Victoria the lowest (0.6%).

Table 1 Estimated Indigenous population, Australia , by jurisdiction, 30 June 2001

Jurisdiction	Indigenous population	Proportion of Australian Indigenous population (%)	Proportion of jurisdiction population (%)
New South Wales	134,888	29.4	2.1
Victoria	27,846	6.1	0.6
Queensland	125,910	27.5	3.5
Western Australia	65,931	14.4	3.5
South Australia	25,544	5.6	1.7
Tasmania	17,384	3.8	3.7
Australian Capital Territory	3,909	0.9	1.2
Northern Territory	56,875	12.4	28.8
Australia	458,520	100.0	2.4

Source: Australian Bureau of Statistics, 2003 [4]

Notes:

1. The estimates of the resident Indigenous population, based on the 2001 Census counts, make allowances for unknown Indigenous status and for net under-enumeration and make a back adjustment for natural increases between 30 June 2001 and 7 August 2001 (the date of the census).
2. Australian population includes Jervis Bay Territory , the Cocos (Keeling) Islands , and Christmas Island .

The census counts for Indigenous people were 16% higher in 2001 than in 1996 (the counts for the total Australian population were 6% higher) [5]. The difference between births and deaths contributed to 12% of the overall increase among Indigenous people, with much of the remaining 4% being attributed by the ABS to ‘an increasing propensity for persons to be identified as Indigenous on census forms’. The increase of 16% between 1996 and 2001 followed an increase of 33% between 1991 and 1996.

The majority of Indigenous people live in cities and towns, but the Indigenous population is much more widely dispersed across Australia than is the non-Indigenous population. Slightly more than one-half of the Indigenous population lives in areas classified as ‘major cities’ or ‘inner regional’ areas, compared with almost nine-tenths of the non-Indigenous population [6]. (As well as these two classifications of ‘remoteness’ in terms of access to goods and services and opportunities for social interaction , the Australian Standard Geographical Classification (ASGC) has four other categories: ‘outer regional’, ‘remote’, ‘very remote’ and ‘migratory’ [7].) Around one-quarter of Indigenous people live in areas classified as ‘remote’ or ‘very remote’ in relation to having ‘ very little or very restricted access to goods and services and opportunities for social interaction’ [6, 8]. Only 2% of non-Indigenous people live in remote or very remote areas.

In terms of specific geographical areas, more than one-half of all Indigenous people live in nine of the 36 ATSIC regions: Sydney; Brisbane; Coffs Harbour; Wagga Wagga; Perth; Cairns; Townsville; Hobart; and Adelaide [5].

Of the estimated Indigenous population of 458,520 people, around 409,800 identified as Aboriginal, around 29,120 as Torres Strait Islander, and around 19,600 as both Aboriginal and Torres Strait Islander (the census question on Indigenous status enabled people to identify as Aboriginal, Torres Strait Islander or Aboriginal and Torres Strait Islander.) [4, 5]. A total of 429,392 people identified as Aboriginal (including those who were identified as Aboriginal and Torres Strait Islander) and 48,730 as Torres Strait Islander (including those who were identified as Aboriginal and Torres Strait Islander) (Table 2). As expected, most Torres Strait Islander people live in Queensland , with NSW the only other State with a substantial number of Torres Strait Islanders.

Table 2 Estimated resident Indigenous population by Aboriginal/Torres Strait Islander status and jurisdiction, 30 June 2001

Jurisdiction	Total Aboriginal population	Proportion of total Aboriginal population (%)	Total Torres Strait Islander population	Proportion of total Torres Strait Islander population (%)
New South Wales	130,140	30.3	8,628	17.7
Victoria	25,932	6.0	3,089	6.3
Queensland	107,548	25.0	28,453	58.4
Western Australia	64,949	15.1	2,481	5.1
South Australia	24,683	5.7	1,469	3.0
Tasmania	16,001	3.7	2,389	4.9
Australian Capital Territory	3,734	0.9	305	0.6
Northern Territory	56,217	13.1	1,858	3.8
Australia	429,392	100.0	48,730	100.0

Source: Derived from ABS, 2002 [5] and ABS, 2003 [4]

Notes:

1. The estimates of the resident Indigenous populations, based on the 2001 Census counts, make allowances for unknown Indigenous status and for net under-enumeration and make a back adjustment for natural increases between 30 June 2001 and 7 August 2001 (the date of the Census).
2. People who identified as being both Aboriginal and Torres Strait Islander are included in the figures for each sub-population. As a result, the combined figure for this table is around 19,600 higher than the estimated resident population of 458,520.
3. Australian populations include Jervis Bay Territory , the Cocos (Keeling) Islands , and Christmas Island .

The Indigenous population is markedly younger than the non-Indigenous population – in 2001, 40% of Indigenous people were aged less than 15 years, compared with 21% of non-Indigenous people. Only 2.6% of the Indigenous population was aged 65 years or over, compared with 12% of the non-Indigenous population (see Figure).

The socioeconomic context

The current health status of Indigenous people is only explicable in terms of their extreme social disadvantage [9]. This social disadvantage, directly related to dispossession and characterised by poverty and powerlessness, is reflected in measures of their education, employment, income and housing. Before summarising key indicators of Indigenous health status, the current sections provide information about the context within which these indicators should be considered.

Key indicators in these areas for Indigenous people nationally include:

Educational attainment

According to the 2001 Census:

• 3.0% of Indigenous people aged 15 years or older had never attended school, compared with only 1.0% of non-Indigenous people;
• 17% of Indigenous people and 38% of non-Indigenous people reported having completed year 12 or equivalent (people aged 15 years or older);
• less than 2% of the Indigenous population reported attending a university or other tertiary institution, compared with almost 4% of the non-Indigenous population; and
• among those who had left school, 35% of the non-Indigenous population had some form of post-secondary school qualification (including degrees, diplomas, and trade or basic qualifications), compared with less than 15% of Indigenous people [derived from 10].

Employment status

From information collected by the 2001 Census (which uses different procedures to those used in the compilation of the standard employment indicators):

• almost 22% of Indigenous males aged 15 years or over were unemployed, as were almost 18% of Indigenous females – the levels for non-Indigenous people were 7.7% for males and 6.5% for females;
• excluding people employed under the Community Development Employment Projects (CDEP) scheme, the overall Indigenous unemployment rate would have been around 34% – almost five times the rate of 7.2% for non-Indigenous people³;
• just under a quarter of employed Indigenous Australians worked as ‘labourers and related workers’ (Australian Standard Classification of Occupations (ASCO)), as did around 8% of employed non-Indigenous people;
• around 15% of employed Indigenous Australians were classified as managers or professionals (ASCO ‘managers and administrators’ and ‘professionals’), as were 28% of employed non-Indigenous people [derived from 10].

Income

Key indicators include:

• the median family income for Indigenous people ($630) in 2001 was slightly more than one-half of that for non-Indigenous people ($1,188) [derived from 10] ; and
• CDEP payments were the main source of income for 11% of Indigenous people (30% in remote areas and 4% in non-remote areas), and other government pensions and allowances for 52% [11]. The reliance on government payments is more than twice that of non-Indigenous people.

Housing and the physical environment

The level and standard of current housing is a clear expression of Indigenous disadvantage, not only in remote areas, but also in long-settled parts of Australia . The sub-standard living conditions are generally characterised by overcrowding, inadequate water and washing facilities, poor sanitation and sewage disposal, limited food storage and sub-optimal food preparation facilities.⁴

Key indicators include:

• the average size of an Indigenous household was 3.5 persons compared with 2.6 persons per non-Indigenous household [12]. The average size of Indigenous households increased with remoteness of residence, ranging from 3.2 persons per household in the major cities to 5.3 in very remote areas. Across Australia, four-fifths of 2 or 3 bedroom households with 10 or more residents were Indigenous households [derived from 13];
• 15% of Indigenous households required at least one additional bedroom, compared with around 4% of other households [12]. The proportions of Indigenous households requiring additional bedrooms ranged from 11% in major cities to 42% in very remote areas;
• 19% of Indigenous households in non-remote areas reported their accommodation to be in high need of repairs, compared with 7% of non-Indigenous households [14]. In remote and very remote areas, 19% needed major repairs and 10% needed replacement [15].

For Indigenous people living on discrete Indigenous communities:⁵

• bore water was the main source of drinking water for 62% of the total number of discrete Indigenous communities included in the 2001 CHINS [15];
• water restrictions were significant in 2001, with 35% of Indigenous communities (with a usual population of 50 or more) having experienced water restrictions within the previous year [15];
• 20% of 213 discrete Indigenous communities with 50 or more residents who were not connected to town water had not have their water tested within the previous year [15]; 26% of the communities had drinking water of poor quality that had failed testing at least once within the previous year;
• 7% of communities had no organised sewerage system [15];
• 48% of 327 discrete Indigenous communities with 50 or more residents reported a sewage overflow or leakage within the year previous to the 2001 CHINS [15];
• 94% of discrete Indigenous communities with a usual population of 50 had organised rubbish collections in place, but rubbish was disposed of in an unfenced tip in 53% of communities (this may allow rubbish to be spread by dogs and other vectors or blown from the tip) [15];
• 7% of discrete Indigenous communities with populations under 100 people had no organised electricity supply [15];
• generators were the main source of organised electricity for 66,451 people living in 647 discrete Indigenous communities;
• 82% of the 327 discrete Indigenous communities with 50 or more residents experienced electricity interruptions in the previous year;
• 31% of the discrete Indigenous communities with 50 or more residents had experienced some flooding in the previous year [15];
• 42% of discrete Indigenous communities with 50 or more residents had experienced ponding – the formation of ‘pools of still water that remain stagnant for a period of one week or more and cover an area of at least 10 square metres’ [16, p.22] – in the year prior to the 2001 CHINS [15].

The CDEP scheme offers unemployed Indigenous Australians the opportunity of working in community-managed projects and enterprises if they forego unemployment-related social security benefits.

The information summarised here has been extracted and/or derived from two main sources: the five-yearly Australian Census of Housing and Population (ABS, 2002); the 2001 Community Housing and Infrastructure Needs Surveys (CHINS), which collected information about housing in discrete Indigenous communities throughout Australia (ABS, 2002)

Information about discrete Indigenous communities – defined as geographic locations, bounded by physical or legal boundaries, and inhabited or intended to be inhabited predominantly (i.e. > 50% of usual residents) by Indigenous people, with housing or infrastructure that is managed on a community basis – was collected by the 2001 CHINS.

Births and pregnancy outcome

• Age of mothers
• Total fertility rates
• Birthweights

In 2003, there were 11,740 births registered in Australia with one or both parents identified as Indigenous (5% of all births registered), but this figure probably underestimates the true number considerably as it has been estimated that only 91% of Indigenous births in 1998-2003 were correctly identified [17]. Completeness of identification varies across the country, with only Queensland , WA, SA and the NT having levels above 90%. Both parents were identified as Indigenous in 31% of these births occurring in 2003, only the mother in 43% (including births where paternity was not acknowledged and those where the father’s Indigenous status was unknown), and only the father in 27%.

Age of mothers

In 2003, Indigenous women tended to have more babies and to have them at younger ages than did non-Indigenous women [17]. The median age of Indigenous mothers was 24.6 years compared with 30.5 years for all women. The highest birth rates (known technically as fertility rates) were for the 20-24 years age group for Indigenous women and in the 30-34 years age group for non-Indigenous women (Table 3). Fertility of teenage Indigenous women (73 babies per 1000 women) was more than four times the fertility rate for all teenage women (16 babies per 1000).

Total fertility rates

In 2003, total fertility rates were 2,145 births per 1,000 Indigenous women and 1,755 per 1,000 for all mothers (Table 4) [17] . The highest Indigenous fertility occurred in the NT (2,771 babies per 1,000), followed by Queensland (2,332 babies per 1,000) and SA (2,172 babies per 1,000).

Table 3 Age-specific fertility rates, by Indigenous status of mother, selected jurisdictions, Australia , 2003

Status of mother / age group	Jurisdiction
	NSW	Vic	Qld	WA	SA	Tas	NT	Aust
Indigenous
15-19	54	49	76	87	68	52	123	73
20-24	124	98	133	144	114	93	174	133
25-29	100	110	117	122	92	73	131	111
30-34	65	71	71	69	65	49	84	70
35-39	28	29	36	34	40	23	45	34
40-44	7	7	9	8	10	3	9	8
All mothers
15-19	15	10	22	19	15	26	65	16
20-24	56	42	64	56	52	74	114	55
25-29	106	94	107	104	103	118	117	103
30-34	114	118	107	110	111	108	104	113
35-39	57	58	48	51	52	44	63	54
40-44	11	11	8	9	11	7	13	10

Source: Derived from ABS, 2004 [17]

Notes:

1. Rates per 1,000 women in each age group
2. Caution should be exercised in the interpretation of the figures. This is because the identification of Indigenous births is less than 90% for all jurisdictions except Queensland , WA, SA and the NT.
3. Numbers of Indigenous births for the ACT were not available

Table 4 Total fertility rates, by Indigenous status of mother, selected jurisdictions, Australia , 2003

Status of mother	Jurisdiction
	NSW	Vic	Qld	WA	SA	Tas	NT	Aust
Indigenous	1,892	1,826	2,208	2,323	1,951	1,467	2,830	2,145
All mothers	1,798	1,669	1,776	1,739	1,720	1,892	2,377	1,755

Source: Derived from ABS 2004 [17]

Notes:

1. Total fertility rate is the number of children born to 1,000 women at the current level and age pattern of fertility
2. Caution should be exercised in the interpretation of the figures. This is because the identification of Indigenous births is less than 90% for all jurisdictions except Queensland , WA, SA and the NT.

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Birthweights

The average birthweight of babies born to Indigenous mothers in 2001 was 3,166 grams, which is around 200 grams less than the average for babies born to non-Indigenous mothers, 3,382 grams (Table 5) [18]. Babies born to Indigenous women in 2001 were more than twice as likely to be of low birthweight (LBW) (12.9%) than were those born to non-Indigenous women (6.0%). (LBW, which is defined as a birthweight of less than 2,500 grams, increases the risk of death in infancy and other health problems.) The low-birthweight proportions for babies born to Indigenous women were highest for SA (16.5%), WA (15.7%) and the NT (12.7%).

Table 5 Mean birthweights and percentage of low birthweight for babies born to Indigenous and non-Indigenous mothers, selected jurisdictions, Australia , 2001

	NSW	Vic	Qld	WA	SA	NT	Aust
Indigenous mothers
Mean birthweight	3,186	3,205	3,213	3,100	3,095	3,138	3,166
% low birthweight	12.5	11.7	11.2	15.6	16.5	12.7	12.9
Non-Indigenous mothers
Mean birthweight	3,387	3,368	3,401	3,364	3,375	3,354	3,382
% low birthweight	5.8	6.2	6.0	5.9	6.1	6.0	6.0

Source: Derived from Laws and Sullivan, 2004 [18]

Notes:

1. Low birthweight is defined as less than 2,500 grams
2. Mean birthweights for babies born to non-Indigenous mothers have been estimated from published figures for Indigenous and all mothers

Risk factors for LBW include socioeconomic disadvantage, the size and age of the mother, the number of babies previously born, the mother’s nutritional status, illness during pregnancy and the duration of the pregnancy [19]. A mother’s alcohol consumption and use of tobacco and other drugs during pregnancy can also impact on the size of her baby. According to the Western Australian Aboriginal Child Health Survey (WAACHS), infants born to mothers who used tobacco during pregnancy had a significantly lower average birth weight (3,110 grams) than did infants born to mothers who had not used tobacco during pregnancy (3,310 grams) [20]. Lowest average birthweights were for infants whose mothers used marijuana with tobacco (3,000 grams) or with both tobacco and alcohol (2,940 grams).

Mortality

• Standardised death rates
• Expectation of life
• Age at death
• Infant mortality
• Causes of death
• Maternal mortality

Major impediments to producing a complete picture of Indigenous mortality in Australia are the incomplete identification of Indigenous status in death records, and the experimental nature of the population estimates [12]. As a result, the 2,140 deaths registered in 2002 where the deceased person was identified as Indigenous is certainly an underestimate of the actual number of Indigenous deaths [21].

Assessment by the ABS of the completeness of recording of Indigenous deaths is based on a comparison of registered Indigenous deaths with an estimate of the expected number of Indigenous deaths for the particular jurisdiction. The estimated completeness of identification of Indigenous people in death registrations has improved generally in recent years, but was still only 55% overall in 2001 [22]. WA, SA and the NT have been the jurisdictions with the most complete identification, but, except for the NT, identification in 2001 was generally quite poor (see footnote in ‘Limitations of the sources of Indigenous health information’ for proportions of Indigenous deaths identified correctly). Reflecting this, the ABS provided in 2001 detailed breakdown of Indigenous deaths only for NSW, Victoria , Queensland , WA, SA and the NT [22]. The poor coverage, coupled with the need to update the procedures for estimating coverage based on population figures derived from the 2001 census, meant that the ABS publication for 2002 did not include detailed tables of Indigenous deaths, nor information about overall death rates. As a result, there is no consistency about the extent of information available for recent years. Reflecting this, readers should be aware that the following sections vary in terms of the years to which they relate.

Standardised death rates

After adjusting for the differences in the age structures of the Indigenous and non-Indigenous populations, death rates for Indigenous people were between two and four times those of non-Indigenous people in Australia in 2001 (rates and ratios for the projected numbers of deaths should be interpreted with caution for two reasons: (1) the numbers are based on the estimated completeness of Indigenous identification in death registration systems for each jurisdiction; and (2) the population figures may under-estimate the actual numbers of Indigenous people. It is likely, however, that the true rates will be closer to those based on the projected numbers than to those based solely on death registrations.) (Table 6) [22] .

Table 6 Indigenous and non-Indigenous indirectly standardised death rates (ISDRs) and ISDR ratios, by jurisdiction, 2001

Jurisdiction	Indigenous rate		Non-Indigenous rate	Rate ratio
	Registered	Projected		Registered	Projected
New South Wales	9.9	21.8	5.4	1.8	4.0
Victoria	8.6	21.1	5.0	1.7	4.2
Queensland	12.6	22.5	5.6	2.3	4.0
Western Australia	13.4	21.5	5.2	2.6	4.1
South Australia	13.7	23.2	5.6	2.4	4.1
Northern Territory	20.2	23.6	6.0	3.4	3.9
Australia	12.4	22.3	5.3	2.3	4.2

Source: Derived from ABS, 2002 [22]

Notes:

1. The projected numbers of deaths are based on the estimated completeness of Indigenous identification in death registration systems for each jurisdiction
2. Rates are per 1,000 population; rate ratio is the Indigenous rate divided by the non-Indigenous rate

Expectation of life

After adjustment for the underestimate of the number of deaths identified as Indigenous (using the 1996 Census-based estimates and projections), Indigenous males born in 1999-2001 could be expected to live to 56.3 years, almost 21 years less than the 77.0 years expected for all males (Table 7) [22] . The expectation of life at birth of 62.8 years for Indigenous females was almost 20 years less than the expectation of 82.4 years for all Australian females.

 

Table 7 Expectation of life at birth for Indigenous people and the total population, Australia and selected States, 1999-2001

Population	Males	Females
Indigenous
Australia	56.3	62.8
New South Wales	56.8	63.6
Victoria	56.8	63.8
Queensland	56.6	62.5
Western Australia	55.5	63.0
South Australia	55.1	61.0
Northern Territory	55.7	62.1
Total population
Australia	77.0	82.4

Source: ABS, 2002 [22]

Note: The Australian Indigenous estimates are based on the adjusted numbers of deaths for NSW, Victoria, Queensland, WA, SA and the NT, and do not include deaths for the ACT and Tasmania.

Age at death

For those jurisdictions with reasonable information about Indigenous deaths, the median age at death for Indigenous males in 2002 ranged from 47.1 years for the NT to 56.3 years for NSW [21]. (The median age at death is the age below which 50% of people die. Because the measure partly reflects the age structures of the respective populations, it is a less precise measure than age-specific death rates, which are summarised below.) These levels are around 20 years less than those for non-Indigenous males, which were generally around 76-77 years. The median age at death for Indigenous females in 2002 ranged from 50.0 years for the NT to 61.9 years for NSW. These levels are more than 20 years less than those for non-Indigenous females, which were generally between 82 and 83 years.

Age-specific death rates are higher for Indigenous people than for the total population across all age groups, but the rate ratios are particularly high in the young and middle adult years (Table 8) [21]. (These ratios, being based on the numbers of deaths registered, are likely to underestimate the true differences between death rates for Indigenous people and the total population by up to 30%.)

Table 8 Indigenous and total population age-specific death rates (registered deaths) and Indigenous:total population rate ratios, by sex, New South Wales , Queensland , Western Australia , South Australia , and the Northern Territory , 2002

Age group (years)	Indigenous		Total population		Rate ratio
	Males	Females	Males	Females	Males	Females
0-4	3.0	3.0	1.3	1.1	2.3	2.7
5-9	0.2	0.2	0.1	0.1	2.0	2.0
10-14	0.3	0.3	0.2	0.1	1.5	3.0
15-19	1.1	0.9	0.6	0.3	1.8	3.0
20-24	1.9	1.5	1.0	0.3	1.9	5.0
25-29	3.5	1.5	1.1	0.4	3.2	3.8
30-34	5.4	3.5	1.2	0.5	4.5	7.0
35-39	5.9	3.3	1.3	0.7	4.5	4.7
40-44	8.3	4.4	1.7	1.0	4.9	4.4
45-49	12.9	6.9	2.7	1.5	4.8	4.6
50-54	17.0	10.4	3.8	2.5	4.5	4.2
55-59	20.0	15.2	5.9	3.8	3.4	4.0
60-64	35.6	25.5	10.2	6.1	3.5	4.2
65-69	56.7	34.9	16.6	9.7	3.4	3.6
70-74	55.9	52.1	28.4	16.3	2.0	3.2
75+	116.8	93.1	80.3	65.2	1.5	1.4

Source: Derived from ABS, 2003 [21]

Notes

1. Indigenous and total population rates are for NSW, Qld , WA , SA and the NT combined
2. Rates are per 1,000 population
3. Rate ratio is the Indigenous rate divided by the total population rate

Infant mortality

The infant mortality rate is the number of deaths of children under one year of age in a calendar year per 1,000 live births in the same calendar year. For those jurisdictions with reasonable information about Indigenous deaths in 2000-2002, the highest Indigenous infant mortality rate was in the NT (18.1) and the lowest in NSW (9.5) (Table 9) [21]. These rates are considerably higher than those for the total population in these jurisdictions, which range from the NT (11.2) to WA (4.6).

Table 9: Infant mortality rates, Indigenous and total populations and rate ratios, selected jurisdictions, 2000-2002

Jurisdiction	Indigenous	Total population	Rate ratio
New South Wales	9.5	5.0	1.9
Queensland	11.5	6.0	1.9
Western Australia	16.5	4.6	3.6
South Australia	10.4	4.8	2.2
Northern Territory	18.1	11.2	1.6

Source: Derived from ABS, 2003 [21]

Notes:

1. Infant mortality rate is the number of infant deaths per 1,000 live births
2. The Indigenous rates are likely to be under-estimated, due to the incomplete identification of Indigenous status on death records

Causes of death

For deaths identified as Indigenous in 2000-2002, cardiovascular disease (also known as ‘diseases of the circulatory system’, which includes heart disease and stroke) was the leading cause of death for Indigenous males and females living in Queensland, WA, SA and the NT, with rates 3.2 and 2.8 times those of males and females of the total population (note: the estimates quoted here have not been adjusted for the likely under-identification of Indigenous people in death registration systems, so the numbers and SMRs could be up to 30% higher) (Table 10) [19].

For Indigenous males, the next most frequent causes of death were injuries (including transport accidents, intentional self-harm and assault) (rate 3.0 times that of the total male population), malignant neoplasms (cancers) (1.3), diseases of the respiratory system (3.9), and endocrine, nutritional and metabolic disorders (mainly diabetes) (7.3). For Indigenous females, the most frequent causes of death after cardiovascular disease were malignant neoplasms (rate 1.6 times that of the total female population), endocrine, nutritional and metabolic disorders (11.7), injuries (2.9), and disease of the respiratory system (3.6).

Maternal mortality

In 1997-1999 (the most recent period for which detailed data are available) seven (9.3%) of the 90 maternal deaths where Indigenous status was known were of Indigenous women (Indigenous status was not reported in 17% of the deaths) [23].

Reflecting the higher rate of confinements among Indigenous women, the maternal mortality ratio for Indigenous women in 1995-1997 was 23.5 per 100,000 confinements, more than three times higher than the ratio of 7.6 per 100,000 for non-Indigenous women (Table 11). For direct maternal deaths, the ratio for Indigenous women was 13.0 compared with 5.1 for non-Indigenous women⁶.

Table 10 Numbers of Indigenous deaths, by cause and sex, and Indigenous standardised mortality ratios, Queensland , Western Australia , South Australia and the Northern Territory, 2000-2002

Cause of death	Males		Females
	Number	SMR	Number	SMR
Circulatory	664	3.0	510	2.2
Injuries	524	3.0	230	2.9
Cancer	356	1.3	314	1.6
Respiratory	228	3.9	170	3.6
Endocrine, nutritional and metabolic	193	7.3	250	10.1
Digestive	118	4.6	90	3.4
Mental and behavioural disorders	79	3.6	37	1.0
Nervous system	67	2.7	44	1.6
Infectious and parasitic	64	5.3	53	5.4
Genitourinary	48	4.6	90	7.5
Other	216	–	190	–
All causes	2,557	2.9	1,978	2.6

Source: AIHW, 2004[19]

Notes: 1 The standardised mortality ratio (SMR) is the ratio of the number of Indigenous deaths occurring to the number expected if the age, sex and cause-specific rates of the Australian total population applied to the Indigenous population.

2 Due to under-identification of Indigenous deaths, these numbers and SMRs are likely to underestimate the true differences between the Indigenous and total populations by around 30%

Table 11 Numbers of confinements, maternal deaths and maternal mortality ratios, by Indigenous status, Australia , 1997-1999

Indigenous status	Confinements	Maternal deaths	Maternal mortality ratio
Indigenous	25,530
All maternal deaths		7
Direct and indirect maternal deaths		6	23.5
Non-Indigenous	758,030
All maternal deaths		83
Direct and indirect maternal deaths		62	7.6

Source: Slaytor, Sullivan and King, 2004 [23]

Note:

1. Maternal mortality ratio is the number of maternal deaths divided by the number of confinements (in 100,000s). Due to some uncertainty about the numbers of Indigenous deaths and confinements, some caution must be exercised in the interpretation of the ratios.
2. The non-Indigenous numbers and ratios include deaths for which Indigenous status was not known. This probably results in a slight, unknown over-estimate, and a resultant under-estimate of the differences between Indigenous and non-Indigenous women.

Hospitalisation

• Separation rates
• Age-specific separation rates
• Causes of hospitalisation

Separation rates

Of the 6.65 million hospital separations recorded in Australia during 2002-03, almost 203,000 (3%) were identified as Indigenous [24]. The age-standardised separation rate of 620 separations per 1,000 for the Indigenous population was almost twice that of the non-Indigenous population (329 per 1,000). The proportions of separations involving just overnight stays in hospital were very similar for Indigenous and non-Indigenous people – 47% and 46% respectively.

The identification of Indigenous people in hospital data is considered acceptable for only WA, SA and the NT, so these Australia-wide rates under-estimate the true difference between Indigenous and non-Indigenous hospitalisation. For jurisdictions with acceptable levels of Indigenous identification, the ratios of Indigenous and non-Indigenous separation rates are higher: 2.6 for WA, 2.0 for SA and 4.3 for the NT [24]. (Overall, it is likely that the Australia-wide numbers and rates for Indigenous hospitalisation could be up to 25% higher.

Age-specific separation rates

Separation rates were higher for Indigenous people than for non-Indigenous people for virtually all age groups, with the highest differences in the middle adult years (Table 12) [24].

Table 12 Age-specific hospital separation rates, by Indigenous status and sex, and Indigenous:non-Indigenous rate ratios, 2002-03

Age group	Males			Females
	Indigenous rate	Non-Indigenous rate	Rate ratio	Indigenous rate	Non-Indigenous rate	Rate ratio
0-4	333	273	1.2	270	207	1.3
5-14	88	92	1.0	75	71	1.1
15-24	142	126	1.1	369	212	1.7
25-34	304	154	2.0	492	356	1.4
35-44	574	194	3.0	593	282	2.1
45-54	963	283	3.4	1053	309	3.4
55-64	1241	476	2.6	1660	430	3.9
65-74	1142	825	1.4	1777	659	2.7
75+	1074	1219	0.9	1060	890	1.2

Source: Derived from AIHW, 2004 [24].

Notes:

1. Numbers do not include 231,044 separations for which Indigenous status was not stated
2. Rates are expressed as separations per 1,000 population
3. Rate ratio is the Indigenous rate divided by the non-Indigenous rate
4. The rates have not been adjusted for likely under-identification of Indigenous separations, so it is likely that the Indigenous rates, and hence the rate ratios, could be 25-30% higher

Causes of hospitalisation

In 2002-03 the most common reason of hospitalisation for Indigenous people was ‘care involving dialysis’ accounting for 36% of Indigenous separations (73,028 separations) [24]. Many of these separations involved repeat admissions for the same people, some on an almost daily basis. The ICD group ‘Injury and other consequences of external causes’ (including motor vehicle accidents, assaults, self-inflicted harm and falls) was the next most common cause of hospitalisation for Indigenous people, being responsible for 8.4% of separations (17,058 separations) (Table 13). (Unfortunately, the published data do not provide separate figures for males and females.)

Table 13 Leading causes of Indigenous separations (excluding dialysis): numbers, proportions of separations, age-standardised separation rates and Indigenous:non-Indigenous rate ratios, 2002-03

Principal diagnosis	Number of separations	Proportion of Indigenous separations	Rate	Rate ratio
Injury/poisoning	17,058	8.4	41.1	1.9
Pregnancy related	16,932	8.3	28.0	1.2
Respiratory diseases	14,980	7.4	59.9	3.7
Digestive diseases	11,195	5.5	31.5	0.8
Mental & behavioural disorders	9,184	4.5	19.7	1.4
Symptoms, signs not elsewhere classified	8,722	4.3	27.6	1.4
Circulatory diseases	6,920	3.4	24.6	1.1
Genitourinary conditions	5,862	2.9	16.8	0.9
Infectious/parasitic diseases	4,987	2.5	20.9	4.6
Diseases of the skin & subcutaneous tissue	4,981	2.4	13.8	2.4
Other	29,074	14.3	n/a	n/a
All causes, excluding dialysis	129,783	64.0	383.3	1.3

Source: AIHW, 2004 [24]

Notes:

1. The published data do not provide separate figures for males and females
2. Rates, directly standardised using the June 1991 Australian population as the reference population, are expressed as separations per 1,000 population
3. Excludes hospitalisation for dialysis
4. The numbers have not been adjusted for likely under-identification of Indigenous separations, so it is likely that the Indigenous numbers, and hence rates and ratios, could be up to 25% higher

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Selected health conditions

• Cardiovascular disease
• Cancer
• Diabetes

Cardiovascular disease

Cardiovascular disease (CVD) presents a significant burden for Indigenous people in terms of prevalence, hospitalisation, and mortality [25]. Factors contributing to the development of cardiovascular disease include age, socio-economic circumstances, family history, physical inactivity, tobacco smoking, poor nutrition, and related physiological factors (high blood pressure, high blood cholesterol, overweight and obesity, and diabetes). A combination of risk factors and rural and remote dwelling contribute to higher levels of heart, stroke, and vascular disease among Indigenous people [25]. Immediate treatment and care of cardiovascular conditions for many Indigenous people are limited because of distance to health services, the availability of transport to access services, and language and cultural differences.

Extent of cardiovascular disease among Indigenous people

According to the 2001 NHS, the age-standardised prevalence for ‘circulatory problems/ diseases’ was 19% among Indigenous respondents, and 17% among non-Indigenous respondents [26]⁷. Indigenous people living in remote areas were more likely to report having ‘circulatory problems’ than those living in non-remote areas (24% compared with 18%). Of Indigenous people aged 35-44 years, 16% reported a cardiovascular condition, the rate increasing to 31% for those aged 45 to 54 years, and to 47% for those aged 55 years or over. The most commonly reported circulatory system disorder in Indigenous people over 25 years of age was hypertension. The prevalence of hypertension increases with age and among Indigenous people prevalence increased from the age of 35 years, with onset approximately 10 years younger than for non-Indigenous people.

There were 6,920 hospital separations identified as Indigenous for ‘diseases of the circulatory system’ in 2002-03, representing 3.4% of separations identified as Indigenous [24]. Hospitalisation rates were 1.1 times higher than for non-Indigenous people.

Details are not available for 2002-03, but hospitalisation rates for heart failure and coronary heart disease were between 1.5 and three times higher for Indigenous people than for non-Indigenous people in 2001-02 [25]. Indigenous males were more likely to be hospitalised for heart, stroke or vascular diseases than Indigenous females. Indigenous males were three times more likely to be hospitalised for these conditions than other Australian males, and Indigenous females were 1.7 times more likely than other Australian females. For acute rheumatic fever and chronic rheumatic heart disease, hospitalisation rates for Indigenous males and females were six and eight times higher than for other Australians.

Collectively, cardiovascular disease is the leading cause of death in the Indigenous population (Table 10) [27]. I schaemic heart diseases was responsible for 16% of all Indigenous deaths in 2002, compared with 20% of non-Indigenous deaths [28]. In Queensland , WA, SA, and the NT in 2000-2002, ‘heart, stroke and vascular diseases’ were the leading causes of death, accounting for 26% of Indigenous deaths at a rate 2.6 times higher than for non-Indigenous people [25].

Rheumatic heart disease was responsible for relatively few deaths, but the death rate for Indigenous people was 19 times higher than the rate for other Australians [25].

Deaths of Indigenous people from cardiovascular disease occur at younger age groups than those of non-Indigenous people – 62% of Indigenous deaths occurred prior to the age of 65 years compared with 10% for other Australians [25].

Cancer

There is uncertainty about the incidence of cancer among Indigenous people, largely due to the under-identification of Indigenous people in cancer registrations, the exact extent of which has not been quantified [12]. The NT has the most complete information about the incidence of cancer among Indigenous people, and WA is the only other jurisdiction for which reasonable incidence data are available. Information about deaths from cancer is more readily available, but, as noted in the section on mortality, the overall levels of Indigenous identification are not very high.

Many of the cancers affecting Indigenous people are preventable – for example, cancers related to tobacco use, to which Indigenous people are particularly prone due to high levels of smoking [29-31]. (See ‘Tobacco smoking’ in the section on health risk factors.)

Extent of cancer among Indigenous people

The evidence available suggests that the incidence rates of cancer for Indigenous people are slightly lower than those for non-Indigenous people, but that death rates are generally higher (Table 14) [12, 29-32].

Table 14 Cancer: Indigenous to non-Indigenous incidence and death rate ratios, Queensland, WA, SA and the NT

Jurisdiction	Incidence rate ratio		Death rate ratio
	Male	Female	Male	Female
Queensland	0.9	0.9	1.7	1.6
Western Australia	0.7	0.7	1.3	1.2
South Australia	n.a.	n.a.	0.9	1.3
Northern Territory	0.8	0.8	1.1	1.3

Source: ABS & AIHW, 2003 [12]; Kirov and Thomson, 2003 [31]; Zhao, Condon and Garling, 2004 [32]

Notes:

1. Queensland incidence data are for 1996-2000 and mortality data for 1999-2001; WA incidence and mortality are for 1997-2001; and the NT incidence and mortality data are for 1991-2001
2. Rate ratio is the Indigenous age-standardised rate divided by the non-Indigenous age-standardised rate
3. The age-standardised rates from which these ratios were derived have not been included in this table or in other parts of this section because they were calculated using different standard populations – the Queensland, WA and SA rates used the World Standard Population and the NT rates used the 2001 Australian Estimated Resident Population

The patterns of cancer differed somewhat between jurisdictions, but lung cancer was among the leading specific cancers for Indigenous males and females in all jurisdictions – rates for Indigenous people were higher than those for non-Indigenous people except for Indigenous males living in WA [12, 31, 32]. The incidence of breast cancer was generally substantially lower among Indigenous women than among non-Indigenous women, but that of cervical cancer was considerably higher among Indigenous women than among non-Indigenous women. Liver cancer is another specific cancer for which incidence is generally higher for Indigenous people than for non-Indigenous people. Incidence rates for pancreas cancer were higher for Indigenous people than for non-Indigenous people in WA and the NT⁸. On the other hand, colorectal cancer, which has a high incidence among non-Indigenous people, is not among the leading cancers for Indigenous people. The proportions of cancers for which the primary site was unknown were much higher for Indigenous people than for non-Indigenous people in all jurisdictions.

The ICD group ‘neoplasms’ (including cancers) was the third most common cause of death among Indigenous people living in Queensland, WA, SA and the NT combined in 2000-2002 [19]. The number of deaths from neoplasms among Indigenous males was 1.3 times higher than the number expected from rates for the non-Indigenous male population, and the number for Indigenous females 1.6 times higher. Overall, neoplasms were responsible for around 8% of the excess deaths experienced by Indigenous people [12].

The leading specific cause of death from cancer for Indigenous males and females living in WA and the NT was lung cancer, with other smoking-related cancers (particularly cancers of the oropharynx, oesophagus, stomach and pancreas) also being common causes of death [29-32]⁹. The death rates for these cancers were generally higher for Indigenous people than for non-Indigenous people (the exception was the death rate from lung cancer for Indigenous males living in WA, which was slightly lower than for their non-Indigenous counterparts). Breast cancer was also a common cause of death for Indigenous females living in WA and the NT, with rates slightly lower than those for their non-Indigenous counterparts.

Cervical cancer is an important cause of death for Indigenous women, with the death rate for those living in Queensland, WA, SA and the NT in 1999-2002 being more than seven times that of their non-Indigenous counterparts [33]. Except for women aged less than 30 years, rates were higher for Indigenous women than for non-Indigenous women in every age group. Cervical cancer was the second most common cause of death for Indigenous women living in the NT in 1991-2001, with a rate four times that of their non-Indigenous counterparts [32]. A separate analysis of trends in cancer death rates in the NT found that the rate for cervical cancer among Indigenous women decreased by more than 50% in 1997-2000 [30]. Similar trend data are not available for WA, but the death rate for Indigenous women in WA in 1997-2001 was much lower than the rate for Indigenous women in the NT in 1991-2001¹⁰, and only 1.5 times that of non-Indigenous women in WA [31].

The quite low cervical death rate for Indigenous women in WA in 1997-2001 and the marked reduction in the rate for Indigenous women in the NT in 1997-2000 raises the possibility that these rates may be reflecting the impact of preventive Pap test programs, leading to earlier diagnosis and treatment [30].

The analysis of trends in cancer death rates in the NT also found that death rates for smoking-related cancers, including lung cancer, more than doubled between 1977-1982 and 1997-2000 [30]. For these cancers, the higher rate ratios for younger than older Indigenous people was seen as probably related to the comparatively recent uptake of smoking by Indigenous people in the NT.

Importantly, this analysis and a recent review of cancer services for Indigenous people have highlighted the fact that the absolute differences in survival after diagnosis with cancer are greatest for cancers with the highest survival in non-Indigenous people [29, 30]. That is, for cancers that are ‘amenable to early diagnosis, effective treatment and a high probability of cure’ [29, p.8]. As well, some of the most common cancers among Indigenous people are preventable, such as ‘through reduced tobacco consumption, increased Pap test coverage and follow-up treatment, hepatitis B immunisation, and reduced alcohol misuse’ [29, p.9]¹¹.

The review concluded that ‘the experience of Indigenous people and cancer provides evidence that the Australian health system is not operating as effectively for Indigenous people as for other Australians’ and that there was a need for ‘strengthening primary health care services, reducing barriers for access to specialist services and improving collaboration between the two’ [29, pp. 16-17].

Diabetes

Diabetes is a major health problem for many Indigenous people, not only because the prevalence and hospitalisation rates are higher than those of the non-Indigenous population, but also because morbidity and mortality associated with various diabetic complications are likely to increase [34]. Diabetes also poses long-term effects on the quality of life experienced by Indigenous people [35]. Type 2 diabetes is the most common form of diabetes worldwide, and has been recognised as one of the most significant health problems facing Indigenous people in Australia [12].

Risk factors for the development and onset of type 2 diabetes are categorised as non-modifiable and modifiable [36]. Non-modifiable risk factors include family history, race/ethnicity, degree of westernisation, and increasing age. Modifiable risk factors include obesity, poor diet, inactivity, and high blood pressure [37]. Possessing any number of risk factors increases the likelihood of developing type 2 diabetes. Type 2 diabetes development in Indigenous people has consistently been linked to high levels of centrally located obesity, the ‘thrifty genotype’, and/or other genetic factors. Furthermore, the ‘westernisation’ of Indigenous communities has led to current levels of physical inactivity and poor nutrition. Social, economic, and environmental disadvantage have also contributed to higher levels of type 2 diabetes, complications, and other chronic conditions in Indigenous people [38].

Extent of diabetes among Indigenous people

In the 2001 NHS, the age-standardised prevalence for diabetes among Indigenous people was 11%, almost four times the prevalence for non-Indigenous people (3%) [26]. The age-standardised prevalence for Indigenous people was higher for people living in remote areas (16%), and lower for people living in non-remote areas (9%), but it has been estimated that the prevalence could be as high as 20% and 25%, and possibly higher than 30% in remote areas [39].

For 2001-2002, hospital separation rates for diabetes were much higher for Indigenous people (12.3 per 1,000) than for non-Indigenous people (4.9 per 1,000) (Australian Institute of Health and Welfare, 2003). Separation rates for diabetes were higher across all age groups, but they were highest for Indigenous females aged 55-64 years (40 separations per 1,000), and Indigenous males over 65 years of age (38 separations per 1,000) (Australian Bureau of Statistics, 2003).

Deaths due to diabetes accounted for 8% of all Indigenous deaths in 2002, compared with 2% of all non-Indigenous deaths (Australian Bureau of Statistics, 2003). In Queensland , WA, SA and the NT in 1998-2000, the rate for diabetes as the main cause of death among Indigenous males was seven times the rate for non-Indigenous males, and the rate for Indigenous females was 14 times higher than that for non-Indigenous females (National Centre for Monitoring Diabetes, 2002).

Selected health conditions

• Mental health
• Renal disease
• Injury
• Respiratory disease

Mental health

Despite the importance of mental health to the total wellbeing of whole Indigenous community [40], ‘there are glaring deficiencies in our knowledge’ about mental health disorders [41, p. 150] . The deficiencies in knowledge are complicated by the complexity of the general area of mental health, in which ‘diverse views exist and where terms are used in different ways’ [42, p.5].

In trying to clarify the terms used, The National Mental Health Plan, 2003-2008 defines mental health as ‘a state of emotional and social wellbeing in which the individual can cope with the normal stresses of life and achieve his or her potential’ [42, p.5] . (The Plan notes that the term ‘social and emotional wellbeing’ is preferred by some people, including Indigenous people, because of its more positive and holistic connotations.)

The Plan recognises a continuum between mental health (or social and emotional wellbeing) and mental illness – ‘a clinically diagnosable disorder that significantly interferes with an individual’s cognitive, emotional and social abilities’ [42, p.5]. Using this terminology, mental illness includes potentially life-threatening conditions like chronic depression and schizophrenia, for which a person needs professional help, often from a psychiatrist. The Plan uses the term ‘mental health problems’ for those issues that interfere with a person’s cognitive, emotional and social abilities to a lesser extent than a clinical mental illness. Trauma and grief – related to ‘the history of invasion, the ongoing impact of colonisation, loss of land and culture, high rates of premature mortality, high levels of incarceration, high levels of family separations . and also Aboriginal deaths in custody’ – have been identified as underlying the great burden among Indigenous people of ‘mental health problems’, which may lead to ‘mental illness’ [40, 42].

The distinction between ‘mental illness’ and ‘mental health problems’ is not well defined [42], but it is an important distinction in ensuring that all aspects of the lack of mental health (or social and emotional wellbeing) are addressed adequately in Indigenous, and other, populations.

Extent of mental illness and mental health problems among Indigenous people

The extent of mental illness and mental health problems has been recognised as ‘a major difficulty for most [Indigenous] communities’ [40], but, as noted above, the precise details are poorly documented.

Data on the incidence or prevalence of mental illness and mental health problems among Indigenous people are not available [19], and the Indigenous supplement of the 2001 NHS did not include specific questions related to mental health [26].

The 2002 NATSISS didn’t include questions relating specifically to mental health, but did direct attention to stressors experienced in the previous 12 months. Overall, Indigenous people aged 18 years or older were almost one-and-a-half times more likely to report experiencing at least one stressor (82%) than non-Indigenous people did (57%, as reported in the 2002 ABS General Social Survey) [11]. The stressors reported most frequently by Indigenous people were: death of a family member or close friend (46%); serious illness or disability (31%); and inability to get a job (27%) (Table 15). Indigenous people living in remote areas were slightly more likely than those living in non-remote areas to report experiencing a stressor (86% compared with 81%). There were also differences between remote and non-remote areas in the proportions of people reporting the various types of stressors.

Table 15 Proportions (%) of Indigenous people reporting stressors in the previous 12 months, by region of residence and stressor type, Australia , 2002

Type of stressor	Residence
	Australia	Remote	Non-remote
Death of a family member or friend	46	55	42
Serious illness or disability	31	34	30
Not able to get a job	27	25	28
Alcohol or drug related problem	25	37	21
Overcrowding at home	21	42	13
Member of family sent to jail/in jail	20	25	17
Trouble with police	18	22	17
Discrimination/racism	18	16	18
Any stressor	82	86	81

Source: ABS, 2004 [11]

 

There were 9,184 hospital separations with a principal diagnosis of ‘mental and behavioural disorders’ identified as Indigenous in Australia in 2002-03 (4.5% of separations identified as Indigenous, excluding those for renal dialysis) [24]¹³. The rate for Indigenous people was 1.4 times that for non-Indigenous people.

Information about hospitalisation for the specific sub-categories within this ICD chapter is not available for 2002-03, but the separation rates of Indigenous people for ‘mental and behavioural disorders due to psychoactive substance use’ in 2000-01 were 4.8 times higher for males and 3.6 times higher for females than those for their non-Indigenous counterparts [12]. Rates for Indigenous males and females for ‘schizophrenia, schizotypal and delusional disorders’ were more than double those for non-Indigenous males and females, and those for ‘mood and neurotic disorders’ slightly higher.

In 1999-2001, 103 Indigenous people living in Queensland, WA, SA, and the NT died as a result of ‘mental and behavioural disorders’: 4.1 times as many deaths as expected for Indigenous males and 2.1 times as many deaths as expected for Indigenous females (based on total Australian rates) [12]. A further 198 deaths of Indigenous people were attributed to ‘intentional self-harm’ (suicide). The numbers of suicides were 2.8 times more than expected for Indigenous males and 1.9 times more than expected for Indigenous females (based on the sex-specific rates for the total Australian population).

The overall numbers of suicide conceal, however, the very high rates of suicide among young Indigenous people. From the more detailed data available for WA, SA, and the NT in 1997-2001, the Indigenous:non-Indigenous rate ratios were 3.4 for males and 6.1 for females in the 15-24 age groups (see Table 16). The exceptionally high rate for Indigenous females aged less than 24 years – higher even than for non-Indigenous males in that age group – reflects the fact that 20 of the 32 Indigenous female suicides involved females in that age group (four were of females less than 15 years old).

Table 16 Age-specific suicide rates, by Indigenous status and sex, and rate ratios, for WA, SA, and NT (1997-2001)

Age group	Indigenous		Indigenous		Rate ratio
	Males	Females	Males	Females	Males	Females
<24	87.3	29.5	25.5	4.8	3.4	6.1
25-34	104.8	5.0	40.9	7.4	2.6	0.7
35-44	45.9	18.7	33.8	8.6	1.4	2.2
45-54	4.4	4.0	24.0	7.4	0.2	0.5
55-64	17.0	0	16.9	5.5	1.0	0
65-74	0	0	19.7	5.2	0	0
75+	41.4	10.3	22.8	5.3	1.8	2.0

Source: Derived from data provided by the AIHW National Mortality Database and ABS low-series population projections (based on 1996 Census)

Notes:

1. Rates are per 100,000 population; rate ratio is the Indigenous rate divided by the non-Indigenous rate
2. Caution should be exercised in the interpretation of these figures, as some rates for Indigenous people were based on very small numbers of deaths
3. Rates for the <24 years age group include deaths of people aged 14 years or under, but the rates have been calculated using the population figures for the 15-24 years age groups as the denominators

Recent research in Queensland , NSW and the ACT has highlighted the increasing impact of suicide among young Indigenous people [43, 44]. It may be, as Tatz argues, that suicide and attempted suicide among Indigenous youth (at least in NSW and the ACT) is not the result of mental illness ‘in the strict pathological sense’ [44, p.80], but it is certainly a manifestation of mental health problems.

Unfortunately, there is little recent information available about the extent of mental illness among Indigenous people, apart from that about some aspects of hospitalisation. There is, on the other hand, a considerable number of detailed studies – the most recent from the 1980s – which support the conclusion that ‘serious psychiatric disorders occur in Indigenous populations, and are at least as common as in the mainstream population’ [41, p.140].

Renal disease ¹⁴

Renal disease, particularly kidney disease, is more prevalent among Indigenous people than among non-Indigenous people [19], but the high rates of end-stage renal disease (ESRD) among Indigenous people have only been fully recognised in recent years. Currently dialysis is the most common treatment in hospital for Indigenous people. In Indigenous communities, successful management and control of renal disorders depends not only on effective, acceptable medical and surgical treatment but also on action to ameliorate the poor socioeconomic conditions [45].

Risk factors for renal disease include infections, diabetes, high blood pressure, heredity, injury, excess weight, tobacco, smoking and use of certain analgesic compounds and related agents [46]. The major cause of kidney failure in Australia is glomerulonephritis, a term for a group of kidney diseases in which there is inflammation of the glomeruli.

Extent of renal disease among Indigenous people

Notifications of ESRD are much higher for Indigenous people than they are for non-Indigenous people across most of the country, but rates are particularly high in remote areas – up to 30 times higher than the total national incidence [47].

In 2001, 6.2% of the persons registered with the ANZDATA identified as Indigenous (761 Indigenous people out of 12,278 registrations) [12]¹⁵. Of 1,883 new cases starting treatment for renal disease, 9% were Indigenous. Indigenous patients were younger than non-Indigenous patients, with 66% aged less than 55 years.

Between 1997 and 2001, a total of 719 new Indigenous patients were identified with ESRD (Table 17) – the age-standardised notification rate of 645 new cases per 1,000,000 population for Indigenous people was almost nine times the rate of 75 per 1,000,000 for non-Indigenous people. The highest rates were for Indigenous people in the NT (1,471 per 1,000,000) and WA (906), but Queensland (691) and SA (562) also had very high rates.

The death rate from chronic kidney disease for Indigenous people in 2000-2002 was seven times as high as the rate for non-Indigenous people [19]. Between 1999 and 2001, chronic kidney disease was reported as the underlying cause of 108 deaths among Indigenous people living in Queensland , WA, SA and the NT [12].

Table 17 End-stage renal disease: age-standardised notification rates, by Indigenous status, and rate ratios, selected jurisdictions, Australia , 1997-2001

Jurisdiction	Indigenous		Non-Indigenous		Rate ratio
	Number	Rate	Number	Rate
New South Wales	90	289	2,726	76	3.8
Victoria	20	276	2,042	81	3.4
Queensland	190	691	1,244	70	9.7
Western Australia	154	906	646	71	12.7
South Australia	45	562	570	68	10.2
Northern Territory	219	1,471	50	108	17.1
Australia	719	645	7,430	75	8.6

Source: Derived from data provided by ANZDATA and ABS low series population projections (based on 1996 Census)

Notes

1. Rates per 1,000,000 population have been standardised using the Australian 1991 population as the reference
2. Rate ratio is the Indigenous rate divided by the non-Indigenous rate
3. Figures for Australia include Tasmania and the ACT

Dialysis, specifically haemodialysis conducted in urban or regional clinics and hospitals, is the most common form of treatment for Indigenous people with ESRD [48] , but evidence suggest that rates of withdrawal from treatment are also frequently high [49]. High Indigenous withdrawal rates in the NT have been attributed to: difficulties with chronic disability; the complex treatment regimen; and the loss of social support and connection with the land that accompanies relocation [49]. It should be noted, however, that the high rate of withdrawal observed in the NT is not necessarily representative of the wider Indigenous population and is not apparent among Indigenous people in NSW [50].

About 84% of all Indigenous dialysis patients on the ANZDATA registry in 2001 were receiving haemodialysis treatment in either a hospital or a hospital satellite unit [12] . The ICD-10 group ‘care involving dialysis’ accounted for 33% of all hospital separations among Indigenous people in 2001-02 [51]. Indigenous men were around six times as likely to be hospitalised for ‘care involving dialysis’ as were non-Indigenous men; Indigenous women were approximately 14 times as likely to be hospitalised for this reason than their non-Indigenous counterparts.

Despite high treatment rates, an analysis of Indigenous ESRD patients commencing treatment between 1993 and 1998 revealed inequitable access to treatment services for a significant proportion of these patients [47]. Almost one-half of all Indigenous ESRD patients came from regions without dialysis or transplant facilities, and around one-sixth from regions with only satellite dialysis facilities. At the beginning of 2001, only five of the 16 ATSIC regions with the highest Indigenous ESRD incidence rates had satellite dialysis units.

Self-care dialysis in remote communities provides an effective alternative to metropolitan-based treatment. However, when this option is not available or not practicable, remote-area patients are relocated to dialysis units in major cities, with significant psychosocial and economic implications for individuals and the health care system [52]. Research has documented the enormous social, cultural and geographical difficulties experienced by many Indigenous renal patients who have to relocate from remote communities [53].

In terms of prevention, evaluation of a systematic treatment program implemented in the Tiwi Islands (off the coast of the Northern Territory) suggests that progression to ESRD has been reduced by half and that there has been a reduction in deaths from natural causes [54, 55]. This has led to a reversal in the pattern of ESRD in the community, with previously increasing rates of ESRD and natural death reduced. The program focuses on vigorous blood-pressure control and better metabolic management for people with diabetes and renal disease, or with diabetes and high blood pressure. It is centred on the use of the long-acting angiotensin-converting enzyme inhibitor (ACEi) perindopril, an anti-hypertensive with cardiovascular and renal protective effects. The program demonstrates that renal disease can be easily diagnosed and its progression dramatically altered by available interventions (Hoy et al. 2001).

Injury

Injury from a variety of sources presents a significant burden of ill-health among Indigenous people. Assessing the total impact of injury is difficult, however. The vast majority of injuries do not result in hospitalisation or death and there are few systematic data on them other than those collected as part of population surveys, such as the ABS National Health Surveys. As a result, they may not be brought to the attention of health policy-makers and program managers [56-58].

Even for injuries that are serious enough to be recorded in the routine data collections or are identified by specific studies, there are some issues with their classification. The classification of injury has generally followed the World Health Organization’s International Classification of Diseases (ICD), which includes particular attention to the external cause and intention of the injury. This system is followed in this section, but it has its limitations (for more details, see [59]).

Understanding of the proximal factors contributing to most types of injury among Indigenous people is limited, but the levels and types of injury need to be seen within a broad context including: disruption to cultural, environmental, and lifestyle variables; socioeconomic disadvantage; geographical isolation; increased road usage; exposure to hazardous environment(s); substance abuse; violence; social and familial dysfunction; risky behaviour; risky home environments; and limited access to health and social support services [56, 57, 60-62].

Extent of injury among Indigenous people

Data from the 2001 NHS indicate that self-reported health conditions ‘as a result of an injury or accident’ were reported more frequently by Indigenous people than by non-Indigenous people across all age groups [26]. Reporting of injury increased significantly in Indigenous adults over the age of 25 years, and peaked among Indigenous adults between the ages of 45-55 years. Within this age group, 22% of Indigenous and 18% of non-Indigenous people reported a health condition as a result of an injury or accident.

One-quarter of Indigenous people reported in the 2002 NATSISS that they had been a victim of physical or threatened violence in the previous 12 months, a level nearly double that reported in the 1994 NATSIS (13%) [11]¹⁶. After taking account of the different age structures of the two populations, the level of victimisation among Indigenous people was more than twice the level among non-Indigenous people [63]. Victimisation was mainly among younger Indigenous people, with males aged 15-24 years having the highest reported level (36%).

In 2002-03, injuries were responsible for more than 17,000 hospital separations for Indigenous people across Australia – more than 13% of all Indigenous separations (excluding those of renal dialysis) [24]. The separation rate of 41 per 1,000 for Indigenous people was around 1.9 times that of 22 per 1,000 for non-Indigenous people. Information about the specific types of injury responsible for the hospital separations is not available for 2002-03, but in 2000-01 assault was the most common cause of external injury resulting in Indigenous hospitalisation (responsible for 23% of injury separations for Indigenous males, and 31% for Indigenous females), followed by accidental falls (17% males, 15% females), medical and surgical complications (10% males, 14% females), and transport-related injuries (11% males, 7% females) [Derived from 12].

Injury was the underlying cause of death for 15.6% of all Indigenous deaths registered in Australia in 2002, compared with 5.6% of non-Indigenous deaths [21]. From the more detailed data available for 1997-2001, the numbers of deaths from injury among Indigenous people living in WA, SA, and the NT were around three times the number expected for males and more than six times the number expected for females (Table 18) [58]. (Based on the estimated completeness of Indigenous identification for WA, SA, and NT the actual numbers and ratios could be up to 30% higher – see ‘Limitations of the sources of Indigenous health information’.)

Table 18 Injury: numbers of Indigenous deaths and SMRs, WA, SA and the NT, 1997-2001

Injury type	Males		Females
	Number	SMR	Number	SMR
Land transport (V01-V89)	172	3.3	78	6.7
Motor vehicle crashes (V10-V79)	90	2.3	35	3.8
Pedestrians (V01-V09)	62	8.0	33	32.5
Other land transport (V80-V89)	20	4.4	10	0.1
Intentional self-harm (X60-X84)	140	2.2	32	2.5
Assault (X85-Y09)	48	8.5	48	22.3
Other external causes	171	3.5	85	7.5
All types	531	3.2	243	6.4

Source: Thomson and Brooks, 2003 [58], derived from data from the AIHW mortality database

Notes:

1. SMRs (standardised mortality ratios) have been calculated by dividing the numbers of Indigenous deaths for each sex by the numbers expected from the rates for non-Indigenous people of the same sex.

Intentional self-harm was the leading specific cause of injury death among Indigenous males living in WA, SA and the NT in 1997-2001 (responsible for 26% of injury deaths), followed by motor-vehicle crashes (17%) and deaths of pedestrians (12%) [58]. Among Indigenous females, one-fifth of injury deaths were the result of assault, with the other major causes being motor-vehicle crashes and deaths of pedestrians (each 14%), and intentional self-harm (13%).

The numbers of Indigenous deaths were much higher than expected from non-Indigenous rates – for all injury categories and for both sexes (##see SMRs in Table 16). The Indigenous numbers were particularly high for pedestrian deaths (eight times higher than expected for males and 33 times higher for females) and for assault (nine times higher for males and 22 times higher for females). The numbers of Indigenous deaths from intentional self-harm were higher than the numbers expected, by similar ratios for males (2.2) and females (2.5) (see also ‘The extent of mental illness and mental health problems among Indigenous people’).

Death rates from injury for Indigenous males and females were higher than those for their non-Indigenous counterparts in every age group. An indication of the enormous impact of injury on Indigenous females is the fact that their age-specific rates were higher generally than those for non-Indigenous males.

Respiratory disease

Respiratory diseases represent a significant burden of ill-health and hospitalisation among Indigenous people, particularly among very young and older people [64]. The development of respiratory diseases is dependent on a number of contributing factors, including poor environmental conditions, socioeconomic disadvantage, risky behaviour (particularly cigarette smoking), and previous medical conditions [65-68]. Infants and children under 5 years of age are more susceptible to developing respiratory conditions due to factors like hand and face washing, childhood immunisation, parental smoking, poor nutrition (including aspects related to infant-feeding and weaning practices), and poor environmental conditions [65]. Among Indigenous adults, common risk factors for respiratory diseases include tobacco smoking, use of alcohol and other substances, diabetes mellitus and chronic renal disease [67]. Factors that may affect the risk of acquiring asthma include environmental and other related factors (for example diet and lifestyle), which may also change the course of the disease, or trigger attacks of airway narrowing and symptoms [19]. Factors that can trigger airway narrowing and symptoms in people with asthma include exercise, viral infections, irritants (for example, smoking and air pollutants), specific allergens and some food preservatives.

Extent of respiratory disease among Indigenous people

In the 2001 NHS, 33% of Indigenous respondents reported having a respiratory condition, compared with 30% of non-Indigenous respondents [26]. Asthma was the second most commonly reported health condition among Indigenous people with a prevalence of 17% compared with 12% among non-Indigenous people.

There were 14,980 hospital separations identified as Indigenous for respiratory disease in 2002-03, representing 7.4% of separations identified as Indigenous (excluding those for renal dialysis) [24]. Hospitalisation rates for Indigenous people were 3.7 times higher than those for non-Indigenous people (based on the under-identification of Indigenous people in the hospital inpatient collections, these ratios could be up to 25% higher). The more detailed information available for 1999-2000 revealed that separation rates were particularly high in infancy and early childhood [69].

Disease of the respiratory system is among the leading causes of death for Indigenous people, being responsible for almost 9% of all deaths of Indigenous people living in Queensland , WA, SA and the NT in 2000-2002 (Table 10) [19]. The numbers of deaths from respiratory disease among Indigenous people is around four times higher than the numbers expected from rates for the non-Indigenous population (bearing in mind the under-identification of Indigenous people in death registration systems, this difference could be up to 30% higher). Overall, respiratory disease is responsible for more than 9% of the excess deaths experienced by Indigenous people [12].

The more detailed information available for Indigenous people living in WA, SA and the NT combined in 1999-2001 reveals that the leading specific respiratory cause of death for both Indigenous males and females was chronic lower respiratory disease, for which there were around five times more deaths than expected [67]. Pneumonia and influenza were responsible for only small numbers of deaths, but the numbers were 12-15 times more than expected from the rates for the non-Indigenous population.

The differences between Indigenous and non-Indigenous people in death rates from respiratory disease are particularly high among young adults, with rates in the 35-44 years age group being around 20 times higher for males and 10 times higher for females [12].

elected health conditions

• Communicable diseases

Communicable diseases

Communicable diseases of particular importance to Indigenous people include: tuberculosis; hepatitis (A, B, and C); sexually transmitted infections; HIV/AIDS; Haemophilus influenzae type b (Hib); pneumococcal disease, and meningococcal disease [70, 71]. For 2000-01, the Indigenous hospitalisation rate for communicable diseases including infectious and parasitic diseases was more than twice that of non-Indigenous people [12]. The highest rates of hospital separations for ‘infectious and parasitic diseases’ occurred in Indigenous children less than one year of age followed by those aged 1-4 years.

Risk factors for communicable diseases vary according to type of disease. Communicable diseases can be caused by: bacteria (for example, pertussis (whooping cough) and tuberculosis); bacterial toxins (for example, some forms of food poisoning); viruses (for example, measles, influenza and HIV); fungi (for example, tinea); protozoan parasites (for example, malaria) [19]. Communicable diseases also include infestation with larger parasites, such as head lice, as well as diseases which are spread through infectious particles, such as transmissible spongiform encephalopathies.

Information regarding specific communicable diseases comes from a variety of sources, including individual studies and State and Territory based notifiable disease collections. Data from State collections are collected and published by the National Notifiable Disease Surveillance System (NNDSS), but Indigenous status is often not reported for large proportions of notifications.

Hepatitis

Hepatitis, an inflammation of the liver, can be caused by viral infections, alcohol or drug abuse, or an attack by the body’s immune system on itself (OATSIHS 1997). The viruses identified most frequently have been designated hepatitis A, B, and C (hepatitis types D through G have been identified also).

Hepatitis A

Of the 1,012 notifications of hepatitis A for people living in NSW, WA, SA, and the NT in 2000-2002, 113 (11%) were identified as being Indigenous (in 22% of notifications, Indigenous status was not stated) [72]. The standardised notification rate of 9.1 per 100,000 for Indigenous people was almost three times the rate of 3.1 per 100,000 for other people. Differences between Indigenous and other people in notification rates were particularly high among children, with rate ratios of 22 for the 0-4 years age group and 7.7 for the 5-14 years age group.

The real incidence of hepatitis A among Indigenous people is probably much higher than these figures suggest, however, as the disease is endemic in many rural and remote communities [73, 74].

Hepatitis B

Of the 526 notifications of hepatitis B for people living in NSW, WA, SA, and the NT in 2000-2002, 57 (11%) were identified as being Indigenous (in 27% of notifications, Indigenous status was not stated) [72]. The standardised notification rate of 7.2 per 100,000 for Indigenous people was more than four times the rate of 1.6 per 100,000 for other people. Notification rates were highest in the 15-24 years and 25-49 years age groups for both Indigenous and other people, but the difference in rates was greatest for people aged 50 years or older.

The relatively few notifications among people aged less than 15 years (3 Indigenous and 13 others) probably reflect the impact of childhood hepatitis B vaccination programs, which were first introduced for Indigenous people in the NT in the 1980s [72, 75]. These programs appear to have changed the incidence pattern of hepatitis B among Indigenous people, as early research suggests that the virus had been present at high levels in some Indigenous populations for some time: the virus was originally known as the ‘Australia antigen’ after its discovery in an Australian Aboriginal person in 1965 [76]. With a high prevalence in some Indigenous populations, transmission may have occurred more from mother to baby and horizontally through infected wounds on the surface of the skin, rather than its current modes: via blood (particularly from contaminated injecting equipment) and sexually.

Hepatitis C

Of the 11.855 notifications of hepatitis C for people living in WA, SA, and the NT in 1999-2003, 793 (7%) were identified as being Indigenous (in 34% of notifications, Indigenous status was not stated) [Derived from 77]. The crude notification rate of 107 per 100,000 for Indigenous people was almost three times the rate of 39 per 100,000 for other people.

Because of the large proportions of notifications in which Indigenous status was not stated, these rates are likely to under-estimate the true difference between Indigenous and non-Indigenous people in notifications of hepatitis C. SA is the only jurisdiction with very low levels of ‘not stated’ notifications (3.2% for 1999-2003). The extent to which the situation in SA applies to other jurisdictions is not known, but 328 (8%) of the 4,011 notifications of hepatitis C in that State in 1999-2003 were identified as Indigenous. The crude notification rate of 257 per 100,000 for Indigenous people was almost seven times the rate of 38 per 100,000 for non-Indigenous people.

Infection with hepatitis C virus (HCV) occurs via contact with contaminated blood – typically through sharing of a needle during IV drug use (suspected in 75% of new cases), tattooing, or a blood transfusion [78]. HCV can also be passed from mother to foetus during pregnancy. Conflicting reports exist, but sexual contact may be another potential route of transmission. No vaccine exists for HCV. Preventive measures include avoiding IV drug use.

Haemophilus influenzae type b

Haemophilus influenzae type b (Hib) is a bacterium that can cause meningitis, epiglottitis, pneumonia, septicaemia, cellulitis, osteomyelitis, pericarditis and septic arthritis [79]. Babies and children are particularly susceptible to Hib, which is spread by respiratory secretions. The main risk factors for Hib include contact with other children, particularly in large families or day care centres [80].

Hib notifications in Australia declined steeply following implementation of the national vaccination strategy in 1993, but the disease persists at much lower levels [19]. Hib notifications in Australia declined from 533 cases reported in 1991 to 29 cases in 2002, with only two deaths recorded in 2002. However, of 47 notifications of invasive Hib in 2000-2002 in jurisdictions with adequate data, 24 were for children 0-4 years and, of these, 11 (46%) were Aboriginal and/or Torres Strait Islander children [72]. Among children aged 0-4 years, the annual notification rate for Aboriginal and Torres Strait islander children was 10 per 100,000 compared with 0.7 per 100,000 for other children. (These rates represent a reduction of almost 98% since vaccination was introduced.)

Pneumococcal disease

Pneumococcal disease, which is caused by the bacterium Streptococcus pneumoniae (pneumococcus), includes upper respiratory tract infection and lower respiratory tract infection (primarily pneumonia) [71, 72]. Invasive pneumococcal disease (IPD) occurs when the bacterium infects normally sterile sites, such as blood and cerebrospinal fluid, causing life-threatening septicaemia and meningitis. Recognised risk factors for pneumococcal disease include chronic illness (including chronic respiratory, cardiac and renal diseases) and immuno-compromised conditions. Children aged less than five years are particularly susceptible to pneumococcal disease.

Extent of pneumococcal disease among Indigenous people

Indigenous children and adults have a significantly higher incidence of pneumococcal disease than non-Indigenous people, but detailed data are available only for IPD, which has been notifiable Australia-wide since 2001 (since 1997 in Queensland and the NT) [71, 72].

Based on notifications for people living in NSW, NT, WA and SA in 2001-2002, the incidence of IPD among Indigenous people (45 per 100,000) was 4.5 times that among other people (10 per 100,000) [72]¹⁸. For both Indigenous and other people, notification rates were highest in the 0-4 years age group (87 per 100,000 for Indigenous people and 49 per 100,000 for other people) and in the 50 years and over age group (59 per 100,000 compared with 14 per 100,000). Importantly, the incidence among Indigenous people aged 25-49 years was also very high, with a rate (48 per 100,000) 12 times higher than that among other people (4 per 100,000). These aggregated data conceal important regional differences, with notification rates being much higher for the NT (120 per 100,000 in 2001 and 86 per 100,000 in 2002) [81, 82]. The rate among NT Indigenous children aged less than 5 years was 483 per 100,000 in 2001.

The high rates of IPD notifications among Indigenous people are reflected in hospitalisation rates for pneumococcal septicaemia and meningitis [72]. Of the 21 deaths from IPD for people living in Queensland , WA, SA and the NT in 2000-2002, five (24%) were identified as Indigenous. Two of the five deaths identified as Indigenous were of children aged less than 5 years.

Vaccination for IPD is targeted for Indigenous children 0-2 years (except in central Australia and adjacent areas where the conjugate pneumococcal vaccine program extends to five years of age) [72]. Vaccination with the polysaccharide vaccine is recommended for Indigenous adults with risk factors for IPD (all Indigenous adults aged 15 years or over are eligible in the NT), and for all Indigenous people aged 50 years or older.

Meningococcal disease

Meningococcal disease is caused by the bacterium Neisseria meningitidis (also known as meningococcus). Manifestations of meningococcal disease include meningitis, meningo-coccaemia without meningitis, and septic arthritis [72]. The risk of infection can be increased in crowded housing conditions [83].

Extent of meningococcal disease among Indigenous people

The incidence of meningococcal disease is higher among Indigenous people than other Australians, and children aged less than five years are particularly susceptible [72].

Almost 9% (92 cases) of the 1,067 cases of meningococcal disease notified in NSW , WA , SA and the NT in 2000-2002 were identified as Indigenous. More than 31% of all cases and almost 61% of cases identified as Indigenous occurred among children aged 4 years or younger. The rate of 51 per 100,000 for Indigenous children aged 0-4 years was 3.5 times the rate of 15 per 100,000 for their non-Indigenous counterparts. Overall, the standardised rate of 7.2 per 100,000 for Indigenous people was more than twice the rate of 3.4 per 100,000 for other Australians [72]. These combined rates for NSW , WA , SA and the NT conceal important regional differences in notification rates: in 2001, the crude notification rates were 19.7 per 100,000 for Indigenous people living in WA, and 15.8 per 100,000 for those living in the NT [83].

There were 38 deaths from meningococcal disease for people living in Queensland , WA, SA and the NT in 2000-2002 [72]. Five of these deaths were of people identified as Indigenous, four of whom were aged 0-4 years.

The most common groups of meningococcus found in Australia are B (60%) and C (34%), with vaccination available only for serogroup C [84]. Previously recorded outbreaks among Indigenous children in central Australia and north-west Queensland were due to types A and C [85], but recent data suggests that the disease in young children is now mainly due to serogroup B.

Sexually transmitted infections

Sexually transmitted infections (STIs) are spread by heterosexual or homosexual contact with an infected person and most cases are found among sexually active teenagers and young adults [70]. Unprotected sex is a main risk factor for STIs. Infections that can be transmitted through sexual contact include gonorrhoea, syphilis, HIV/AIDS, hepatitis B, chlamydia, human papilloma virus (HPV), genital herpes and donovanosis. HPV and genital herpes are believed to be the most common STIs in Australia , but they are not notifiable diseases so it is difficult to monitor incidence [46].

Most STIs are asymptomatic or produce mild symptoms, and people affected often find out they have an infection through screening and contact tracing [86]. STIs can usually be effectively treated if diagnosed early, but, if left untreated, they may lead to complications.

Variations in notification rates over time may reflect real changes in incidence, but could be due also to the introduction of easier and more sensitive testing procedures, improved education encouraging notification reports from health authorities, and improved contact tracing [87]

Gonorrhoea

Gonorrhoea, which is caused by the bacterium Neisseria gonorrhoea and mainly affects the mucosal and glandular structures of the genital tract (cervix in women, urethra in men), is highly contagious [88]. It can cause pelvic inflammatory disease in women, which can result in ectopic pregnancy or sterility.

The notification rate of gonorrhoea for Indigenous people living in WA, SA and the NT in 2003 was 1,403 cases per 100,000 population (based on 2,151 cases notified), compared with a rate of 29 per 100,000 (999 cases notified) for non-Indigenous people [77].

The disease can be successfully treated with oral antibiotics, but some strains of N. gonorrhoeae in urban Australia are penicillin-resistant [86]. Ceftriaxone is used as treatment in communities in Queensland , for example, where penicillin resistant strains have been found [89]. People with gonorrhoea often also have chlamydia, so the infections are often treated at the same time.

Syphilis

Syphilis, which is caused by the organism Treponema pallidum , is an STI that has primary, secondary, latent, and tertiary stages [90]. The infection is especially contagious during the primary phase, when sores are present and is generally not contagious during the latent phases. Untreated syphilis can lead to serious damage of the nervous system and other body organs, or to death. Penicillin is the usual treatment [86].

The notification rate of syphilis for Indigenous people living in WA, SA and the NT in 2003 was 303 cases per 100,000 population (based on 381 cases notified), compared with a rate of 3 per 100,000 (100 cases notified) for non-Indigenous people [77].

Chlamydia

Chlamydia, which is caused by the bacterium Chlamydia trachomatis, is one of the most common STIs in Australia [86]. The infection in women can cause cervicitis, endometritis, and pelvic inflammatory disease, leading to tubal factor infertility and ectopic pregnancy. In men, it can cause urethritis, epididymo-orchitis, and prostatitis. Azithromycin treatment for chlamydial infection has been a major advance. Due to lack of obvious symptoms of the disease, incidence is underestimated by notification data.

Notification rates for chlamydia were much higher for Indigenous people living in WA, SA and the NT in 2003 than for their non-Indigenous counterparts: 1,323 cases per 100,000 population (based on 2,049 cases notified) compared with 161 per 100,000 (5,306 cases notified) [77].

HIV / AIDS

Australia has so far successfully prevented an uncontrolled spread of HIV (human immunodeficiency virus) and the overall rates of HIV and AIDS ( acquired immune deficiency syndrome ) are low in comparison with other countries [91]. However, great concerns have been expressed about the possible impact of HIV/AIDS among Indigenous people, for whom AIDS has been seen as having the potential ‘to further erode the social and economic fabric of Indigenous communities’ [92]. Indigenous people were seen as being at particular risk of HIV infection due to high rates of STIs and their lack of access to effective services [87].

HIV is transmitted from person to person through the exchange of blood and bodily fluids. In Australia , transmission occurs primarily through sexual contact between men. The virus can also be transmitted through: sexual contact between men and women; sharing of needles and/or syringes (primarily for drug injection) with someone who is infected; and, very rarely in countries like Australia where blood is screened for HIV antibodies, through transfusions of infected blood or blood clotting factors. Babies born to HIV-infected women may become infected before or during birth or through breast-feeding after birth.

HIV/AIDS among Indigenous people

Overall, notification rates for HIV infection and AIDS are similar for the Indigenous population and the non-Indigenous population, and appear to have declined at similar rates over the past decade. For the five-year period 1999-2003, the notification rate for HIV infection was 3.8 cases per 100,000 for both the Indigenous and non-Indigenous populations [77]. These rates are lower than those reported for 1992-1998: 5.2 per 100,000 for Indigenous people and 5.5 per 100,000 for non-Indigenous people [93] . For 1999-2003, the rates of AIDS diagnoses were 1.2 per 100,000 for both the Indigenous and non-Indigenous populations [Derived from 77].

There have been some important differences between Indigenous people and the total population in the characteristics of newly diagnosed HIV infection over the ten-year period 1994-2003 – in terms of age at diagnosis and exposure categories [77]¹⁹. The median age of diagnosis of HIV among Indigenous people was 30 years compared with almost 33 years for the total population. In contrast to the total population, for which less than 8% of diagnoses of HIV occurred in females, more than 31% of cases reported among Indigenous people occurred in females. Infection was acquired by heterosexual contact in 39% of cases among Indigenous people and in only 11% of cases among the total population. Male homosexual contact was responsible for 77% of cases in the total population and for 36% in the Indigenous population, and male homosexual contact with injecting drug use for 4% and almost 11% respectively. Injecting drug use without male homosexual contact was responsible for 4% of cases in the total population and for more than 12% in the Indigenous population.

Overall in Australia , the cumulative number of HIV diagnoses by the end of 2003 after adjustment for reporting delay was estimated to be 20,580 [77]. For the same period, after adjustment for reporting delay, there were 9,380 AIDS cases and 6,372 deaths following AIDS. In comparison, there were 203 HIV notifications among the Indigenous population in the period 1992-2003 and 78 AIDS diagnoses.

Skin infections and infestations

Susceptibility to skin infections increases with poor living conditions and overcrowding [95]. Skin infections and infestations in Indigenous communities reflect serious health inequalities, but have attracted much less professional attention than they deserve. Scabies, a disease caused by the mite Sarcoptes scabiei resulting in inflammation and itching [96], is endemic in many remote Indigenous communities, with prevalence in children up to 50% [95, 97]. The cycles of scabies transmission can result in pyoderma (also referred to as impetigo), a bacterial infection of the skin that can lead to kidney disease and possibly heart disease. Up to 70% of children living in some Indigenous communities have skin sores, with group A streptococcus (GAS) the major pathogen [97]. GAS is responsible for continuing outbreaks of post-streptococcal glomerulonephritis and acute rheumatic fever. Indigenous people, particularly those living in the high-rainfall, humid areas of northern Australia , are also vulnerable to a variety of fungal and related organisms [96].

Skin diseases cause very few deaths directly, but they can be linked with serious complications. They did, however, account for around 2.5% of hospital separations in 2002-03 for patients identified as Indigenous, at a rate around two-and-a-half times that of non-Indigenous people [24].

Gastroenteritis among Indigenous children

Gastrointestinal infections and infestations, particularly those causing diarrhoea, are still significant causes of morbidity among Indigenous children [98].

Diarrhoea, usually referred to as gastroenteritis, is not a major problem among non-Indigenous children in Australia , but it remains a common cause of morbidity for Indigenous children. The greater impact of gastroenteritis among Indigenous than among non-Indigenous children is reflected in hospitalisation data. Unfortunately, detailed data are available only for WA: these data reveal that separation rates for gastroenteritis in the first two years of life are around 10 times higher for Indigenous children than for non-Indigenous children [99]. Separation rates in WA 2000 were 147 per 1,000 for Indigenous infants (less than 12 months of age) and 114 per 1,000 for Indigenous children in their second year of life. Rates for children aged between 2 and 10 years are considerably lower, but the Indigenous:non-Indigenous rate ratios are around 3-4. Separation rates in WA in 2000 were considerably higher for Indigenous infants living outside the Perth metropolitan area (184 per 1,000) than for metropolitan residents (69 per 1,000) [99].

Hospital separation rates for gastroenteritis in WA declined by around 22% between 1994 and 2000 for both Indigenous and non-Indigenous infants [99]. The declines in rates were slightly higher for children in their second year of life: 31% for Indigenous children and 25% for non-Indigenous children. The declines in rates were slightly higher for children living outside the Perth metropolitan area than for metropolitan residents.

Around one-third of 1,001 infants born in WA in 1995 and 1996 who had an index admission for gastroenteritis during their first year of life were Indigenous [100]. Follow-up of this group of infants until 31 May 2002 revealed that 58% of children admitted more than once were Indigenous. Overall, Indigenous children made up more than 38% of all admissions for gastroenteritis. Compared with non-Indigenous children admitted for gastroenteritis, Indigenous children were more likely to: be seriously dehydrated on admission (36% compared with 24%); be undernourished (13% compared with 4%)²⁰; have iron deficiency anaemia (8% compared with 1%); and have gastrointestinal carbohydrate intolerance (10% compared with 5%).

Similar measures of serious illness were documented among children admitted to Royal Darwin Hospital in 1997-98: half of the 44 Indigenous children hospitalised for diarrhoea were acidotic, 32 had moderate to severe hypokalaemia, and 37 had dehydration equivalent to a loss of more than 5% of body weight [101]. Many of the children had an underlying intestinal enteropathy characterised by partial atrophy of the small intestinal villi, which also contributed to gastrointestinal carbohydrate intolerance.

Another expression of the decline in gastroenteritis among Indigenous children, at least in terms of severity, is the marked reductions in mortality. In the period 1970-1979, there were 69 deaths of Indigenous children in hospital in WA from gastroenteritis (53 were infants) [99]. In the period 1980-1989, there were nine Indigenous deaths (six infants), but none in the period 1990-2000.

Selected health conditions

• Eye health
• Ear conditions
• Oral health

Eye health

There has been progress in improving the eye health of Indigenous people, but many Indigenous people are still more likely than non-Indigenous people to suffer from preventable conditions, such as trachoma (a bacterial infection) [102, 103]. The eye health of many Indigenous people is also limited by difficulty in accessing optometrist or specialist services [104]. For those with refractive error, for example, the main issues are access to and utilisation of testing, cost of spectacles, the administrative difficulty of dispensing, and the repair of spectacles. Eye health can be affected by genetic factors, ageing, premature birth, diseases (such as diabetes) smoking, injuries, UV exposure and nutrition.

Extent of eye health problems among Indigenous people

Eye problems were among the conditions reported most commonly in the 2001 NHS [26]. For people living in non-remote areas, similar proportions of Indigenous (49%) and non-Indigenous people (51%) reported having some eye disorder as a long-term health condition. The proportion was slightly less (38%) for Indigenous people in remote areas. Differences between Indigenous and non-Indigenous people were highest in the middle adult years, with total or partial loss of vision being twice as commonly reported by Indigenous than by non-Indigenous people. Levels of hyperopia (long-sighted vision) were similar for Indigenous people (23%) and non-Indigenous people (22%) and the level of myopia (short-sighted vision) reported by Indigenous people was slightly less (17%) than that reported by non-Indigenous people (21%).

According to the WAACHS, 8% of Indigenous children aged 4-17 years did not have normal vision in both eyes (a level significantly lower than the 14% of children in the general population found in the 1993 WA Child Health Survey not to have normal vision in both eyes) [20]. Of the 4-17 year-old Aboriginal children without normal vision in both eyes, 58% used prescribed glasses or contact lenses.

In Australia , trachoma is found almost exclusively within the Indigenous population [103, 104]. It is difficult to develop an accurate map of where trachoma remains endemic because of the lack of systematic screening, but surveys have found high prevalences in communities in northern and central Australia , particularly the latter. A survey in a large central Australian community in late 1998 found that 40% of children aged less than 13 years had infectious trachoma [105]. In other places, such as Broome, Derby and Kununurra in the Kimberley region of WA, the prevalence of trachoma has declined [106].

Diabetic retinopathy is a complication of diabetes, which is a major health problem among Indigenous people (see above) [34]. Diabetic retinopathy, which involves damage to the small blood vessels in the retina, can impair vision and may cause blindness [102]. There are very limited data available on the prevalence of diabetic retinopathy in the Indigenous population [104], but a cross-sectional study in the Katherine region in 1993 and 1996 found that the crude prevalences of diabetic retinopathy (21%) and vision-threatening retinopathy (7-8%) among Indigenous people with diabetes were similar to those reported for non-Indigenous people with diabetes [107]. An evaluation of a non-mydriatic fundus camera among 164 Indigenous people with diabetes living in the Pilbara region of WA, diagnosed retinopathy in 74 out of 328 eyes (23%), with 35 eyes in need of laser treatment [108].

The risk of cataract increases as people age, particularly over the age of forty years. Surgery for cataract tends to be performed at a later stage for Indigenous people than for non-Indigenous people – when the condition is at a more advanced stage and causing greater visual impairment [109]. The proportion of Indigenous people who reported having cataracts in the 2001 NHS was 3% (age-adjusted), compared with 2% of non-Indigenous people [26]. Cataract was reported more frequently by Indigenous males (5%) than by Indigenous females (2%).

Ear conditions

Ear infections are the most common type of illness in babies and young children, and three out of four children experience some form of otitis media (OM) by the time they are 3 years of age (National Institute on Deafness and Other Communication Disorders 2003). OM, which often occurs as a result of another illness (involving viruses or bacteria or both), is a common disorder in both developed and developing countries [110], but its form, onset, and natural history vary from population to population [111]. In developed countries, OM with effusion is prevalent and considered a major problem. In contrast, in developing countries acute and chronic suppurative forms of OM are much more common [112]. The pattern of OM observed among many Indigenous communities differs from that typically observed in the developed world, being more similar to that seen among disadvantaged populations in developing countries [113]. The high prevalence of OM among Aboriginal people is well established, and suppurative OM is of greatest concern.²¹

OM , particularly suppurative forms, is associated with some impairment of hearing, with major implications for language development and learning difficulties [112, 114]. The risk of permanent hearing loss increases if OM is not adequately treated and followed up. The hearing impairment associated with OM is generally conductive in nature²² and mild to moderate in degree, and may be intermittent or persistent depending on the middle-ear condition present at the time [112, 115].

Extent of ear disease among Indigenous people

The level of ear disease and hearing loss among Indigenous people remains higher than that of the general Australian population, particularly among children and young adults [112, 116].

In the 2001 NHS, Indigenous people reported more ear and hearing problems (18%) than did non-Indigenous people (14%) with an increasing prevalence with age [26]. Importantly, the proportions of young people with ear and hearing problems were much higher for Indigenous than non-Indigenous people: 11% compared with 5% for people aged 0-14 years and 13% compared with 5% for those aged 15-24 years.

The more detailed information collected by the WAACHS reveals that 18% of Indigenous children aged 0-17 years had recurring ear infections [20]. Children 0-11 years were more likely (20%) to have recurring ear infections than children aged 12-17 years (14%). Abnormal hearing was reported by carers for 7% of the children aged 4-17 years. Of children with recurring ear infections with discharge, 28% had abnormal hearing compared with 1% of those without ear infections.

These differences are not fully reflected in overall hospitalisation rates for ear and hearing problems, which were similar for Indigenous and non-Indigenous people in 2000-01 [12]²³. There were, however, more separations for Indigenous people (67%) due to otitis media than for non-Indigenous people (60%). For Indigenous hospitalisations, a further 14% were for ear problems due to perforation of the tympanic membrane (compared with 7% for non-Indigenous people).

As is the case with knowledge about most specific health conditions, the most valuable information about ear disease comes from specific studies, which have found particularly high levels of OM among Indigenous people living in rural and remote communities and lower levels for those living in urban areas (see Burrow and Thomson (2003) for a detailed review of the various studies). OM can affect Indigenous babies within weeks of birth and a high proportion of children will continue to suffer from CSOM throughout their developmental years [117].

Studies have found particularly high levels of otitis media ( OM ) among Indigenous people living in rural and remote communities and lower rates for those living in urban areas [116]. OM can affect Indigenous babies within weeks of birth and a high proportion of children will continue to suffer from CSOM throughout their developmental years [117]. Individual studies have documented very high levels of CSOM in some Indigenous communities. The WHO has identified a prevalence of CSOM of greater than 4% as being ‘ a massive public health problem’ requiring ‘urgent attention’ [119, p.29] : some Indigenous communities had a prevalence up to 10 times higher than this [114, 118].

The higher levels of OM that Indigenous people experience in their childhood years are reflected in a higher frequency of hearing loss, which have been documented in numerous studies (see Burrow and Thomson (2003) for a detailed review of the studies).

As with many other areas of Indigenous health, this massive public health problem will be solved ‘only with urgent attention to improving housing and access to running water, nutrition and quality of care, and giving communities greater control over these improvements’ [114, p.178]

Oral health

Oral health is defined as ‘a standard of health of the oral and related tissues that enables an individual to eat, speak, and socialise without active disease, discomfort, or embarrassment and that contributes to general wellbeing’ (UK Department of Health 1994). Thus, it is more than simply the absence of disease in the oral cavity: it is a standard of oral functioning that enables comfortable participation in everyday activities.

Two major threats to oral health are dental caries and periodontal diseases. Dental caries is caused by acid-producing bacteria living in the mouth, which proliferate on sweet and sticky food [120]. Caries is reversible in its early stages, but, if untreated, can cause irreversible damage. Periodontal diseases (affecting the gums) are caused by bacterial infection associated with poor oral hygiene, infrequent dental visits, age, smoking, low education and income levels, and certain medical conditions [120], especially diabetes mellitus [121] and osteoporosis [122].

Extent of oral health problems among Indigenous people

Most information available about oral health in the Indigenous population relates to dental caries among children, and there is limited information about the oral health of adults. Generally the extent of caries in deciduous teeth among young Indigenous children has been increasing, whereas it has been declining for their non-Indigenous counterparts [123].

According to the WAACHS, an estimated 19% of Aboriginal and Torres Strait Islander children were reported by their carers to have holes in their teeth [20] . Prevalence of cavities was lowest for children 0-3 years (8%) and highest for children aged 4-7 years (31%). Carers reported 28% of children had ever had a tooth filled and almost one-in-ten had had a tooth removed because it was not amenable to restorative dental care.

In the Child Dental Health Survey, Northern Territory 2000, considerably fewer Indigenous children than non-Indigenous children were found to have had no history of caries [124]. Indigenous children up to the age of 9 years old had approximately 3 to 4 times more decayed teeth than non-Indigenous children and dmft scores (for deciduous teeth) one-and-a-half to two-and-a-half times higher (two indices are used to measure caries: ‘dmft’ is the number of deciduous (baby) teeth (t) that are decayed (d), missing due to caries (m), or filled due to caries (f); and ‘DMFT’ is the corresponding index for permanent (adult) teeth.). For permanent teeth, Indigenous children had a higher mean number of decayed teeth and a higher mean DMFT score.

Dental decay in deciduous and permanent teeth of Indigenous children living in SA in 2001 was about twice the level for non-Indigenous children, and the proportion of dental decay that was untreated was also greater [12]. An earlier study in South Australia found that the lowest levels of dental decay in Indigenous children were in remote communities (mean dmfs = 1.0), with higher levels in other non-metropolitan areas (mean dmfs = 7.9) and in Adelaide (mean dmfs = 5.2) [125].

The mean number of teeth affected in Indigenous children aged 5-6 years living in the Anangu lands in the cross-border region of WA, SA and the NT (3.2) was more than twice that of children in the total Australian population (1.44) [126]. Compared with the decline in deciduous caries for children in the total population since 1987, A n angu children aged 5-9 years had experienced a 42% increase in the mean number of teeth affected. A n angu adults experienced low levels of dental caries, but tooth loss was found more frequently among adults with diabetes (mean 5.51) than non-diabetics (mean 1.53), and severe periodontal disease was more prevalent among diabetics (79%) than among non-diabetics (13.8%).

The extent of tooth loss and periodontal disease is higher among older Indigenous people than among their non-Indigenous counterparts [123]: around 16% of older Indigenous people had no natural teeth, compared with 10% of non-Indigenous people [127]. The extent of tooth loss results partly from the relatively poor periodontal health of Indigenous people aged 35 years or older [128]. The most common periodontal condition in Indigenous people aged less than 45 years accessing public dental services and Indigenous dental clinics was the presence of calculus (tartar) [12]. For people aged 45 years or older, 23% had periodontal pockets (space between the root of the tooth and the gums) of 6mm or more, and 25% had periodontal pockets of 4-5mm

Disability

According to the WHO’s International Classification of Functioning, Disability and Health (ICF), disability is an umbrella term for impairments, activity limitations and participation restrictions [129]. Impairments are ‘problems in body function or structure such as significant deviation or loss’; activity limitations are ‘difficulties an individual may have in executing activities’; and participation restrictions are ‘problems an individual may experience in involvement in life situations’ [129, pp.7-10]. The ICF recognises that how these aspects impact on an individual are influenced by the ‘physical, social and attitudinal environment in which people live and conduct their lives’ [129, pp.16-17]. Thus, ICF emphasises functioning rather than disability, and views it as an outcome of interactions between health conditions (diseases, disorders and injuries) and contextual factors [130]. It also brings together the classifications of health and disability.

The AIHW is working on the application of the ICF to the classification of disability in Australia (see, for example, National Community Services Data Committee, 2004 [131]). However, much of the information available in Australia about functioning (disability) is based on the previous classifications that focused on disability and handicap. Much of this information is derived from the periodic surveys conducted by the ABS, but these surveys have never included sufficient numbers of Indigenous people to enable any definitive conclusions about disability.

The extent of disability among Indigenous people

There have been few studies of disability in the Indigenous population, but evidence suggests that the level of disability and handicap among Indigenous people is likely to be much higher – ‘perhaps at least twice as high as’ – that of the total population [132, p.223].

This estimate is consistent with a study undertaken in 1991 in the Taree area of New South Wales [133, 134]. The study, which followed the methodology used by the ABS in its national surveys of disability, found that 227 (25%) of the 907 Indigenous people living in households in the Taree area had one or more disabilities [133]²⁴. After adjustment for differences in the age structures of the Indigenous and non-Indigenous populations, the levels of reported disabilities among the Indigenous regular residents of the Taree area were 2.5 times higher for males and 2.9 times higher for females than for males and females in the total Australian population. Almost one-fifth (19%) of regular Indigenous residents reported having a disability of the sense organs, such as hearing loss (8.4%) or loss of sight (1.4%). The next most frequently reported disabilities were ‘disorders of the musculo-skeletal system and connective tissues’ (16%), ‘circulatory system disorders’ (15%), and ‘respiratory system disorders’ (13%). Bearing in mind that the study excluded people living in health establishments and institutions – whose residents would be expected to have higher levels of disability – the levels of disability reported were much higher than those for the total Australian population.

Virtually nothing is known about the overall level and types of disability among Indigenous people in other parts of Australia, but, given the overall levels of ill-health among Indigenous people and the fact that many of the known risk factors for disability are present at high levels in the Indigenous population, the levels documented for the Taree area provide a useful conservative ‘working basis’ until similar studies are undertaken in other parts of the country [135]²⁵.

Health risk factors

• Nutrition
• Physical activity
• Bodyweight
• Immunisation
• Breastfeeding
• Tobacco smoking
• Alcohol use
• Use of other drugs

The factors contributing to the poor health status of Indigenous people should be seen within the broad context of the ‘social determinants of health’ [136, 137]. These ‘determinants’, which are complex and interrelated, include income, education, employment, stress, social networks and support, social exclusion, working and living conditions, gender and behavioural aspects. Related to these are cultural factors, such as traditions, attitudes, beliefs, and customs. Together, these social and cultural factors also have a major influence on a person’s behaviour.

Information about some of these determinants is available (see ‘The context of Indigenous health’). As well, the 2002 NATSISS collected information about stressors experienced by Indigenous people in the previous 12 months [11].

The levels of these stressors and the indicators of the social disadvantage experienced by Indigenous people should be borne in mind in the interpretation of the following information about a number of specific health risk factors.

Nutrition

The nutritional status of Indigenous people is influenced by socio-economic disadvantage, geographical factors, environmental and social factors [138]. Poor nutrition is a common risk factor for overweight and obesity, malnutrition, cardiovascular disease, type 2 diabetes, certain cancers, osteoporosis, and tooth decay [46, 139]. The National Health and Medical Research Council (NHMRC) has endorsed a number of dietary guidelines for infants, adolescents, adults, older Australians, women of childbearing age, and pregnant women [138].

Data from the 2001 NHS indicate that 57% of Indigenous respondents in non-remote areas had a low daily fruit intake (47% non-Indigenous) [26]. However, most Indigenous respondents reported a high to medium daily vegetable intake (83%) compared with a slightly lower proportion of non-Indigenous respondents (77%). Indigenous respondents were more likely to consume whole milk (instead of low fat alternatives) than non-Indigenous respondents, and were more likely to add salt after cooking [12].

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Physical activity

The National Physical Activity Guidelines for Australians currently recommend at least 30 minutes of moderate activity on at least five days of the week to reduce the risk of cardiovascular disease and other chronic conditions [25]. Insufficient levels of physical activity have shown to be a risk factor for cardiovascular disease, type 2 diabetes, certain cancers, depression, and overweight and obesity [140].

Data on the levels of physical activity of Indigenous people are limited [25], but 49% of respondents in the 2002 NATSISS reported participating in some sport or physical recreation activity in the previous 12 months [11]. This level of physical activity is higher than that documented in the 2001 NHS, in which 71% of Indigenous people and 68% of non-Indigenous people aged 15 years or older reported being sedentary or practising low levels of exercise [26].

Bodyweight

Body mass index (BMI – weight in kilograms divided by the square of height in metres) is the usual measure for classifying a person’s weight for height [19]. Being overweight (BMI between 25 to 29.9) or obese (BMI >= 30) increases a person’s risk for cardiovascular disease, type 2 diabetes, respiratory diseases, renal disease, certain cancers, osteoarthritis, pregnancy complications, and psychosocial problems [25]. A high BMI can be a result of poor nutrition, physical inactivity, socioeconomic disadvantage, genetic predisposition, increased age, and alcohol and tobacco use [25, 141].

According to the 2001 NHS, the age-adjusted prevalence of overweight among Indigenous respondents aged 18 years and over living in non-remote areas was 64% compared with 50% for non-Indigenous people [26]. Indigenous people were nearly twice as likely to be obese than other Australians: 31% compared with 16%.

Immunisation

In response to the greater burden of communicable diseases among Indigenous people, the NHMRC has endorsed a series of special guidelines and schedules for immunisation of vaccine-preventable diseases, which include some extra vaccinations [142].

According to the 2001 NHS, full immunisation coverage for Indigenous children under 7 years of age was generally lower than that for non-Indigenous children in non-remote areas [26]. Approximately 66% of Indigenous children were fully immunised for diphtheria and tetanus (78% non-Indigenous), 60% for whooping cough (73% non-Indigenous), 12% for hepatitis B (12% non-Indigenous), 71% for polio (84% non-Indigenous), 46% for Hib (73% non-Indigenous), and 78% for measles, mumps, and rubella (87% non-Indigenous) [12, 26]. The influenza vaccination level for Indigenous adults aged 50 years or older (51%) was similar to that for their non-Indigenous counterparts (47%). For pneumonia, 67% of Indigenous adults aged 50 years or older had never received vaccination, compared with 84% of non-Indigenous adults in that age group [26].

Breastfeeding

Breast milk, which is the natural and optimum food for babies, contains proteins, fats and carbohydrates at levels that are appropriate for an infant’s metabolic capacities and growth requirements [138]. It also has anti-infective properties and contains immunoglobulins which provide some immunity against early childhood diseases [143].

Surveys indicate that a majority of Indigenous women breastfeed their babies. According to the 2001 NHS, 77% of Indigenous children aged under 4 years living in non-remote areas were reported to have been breastfed for at least some period [26]. This level is slightly lower than the 87% of non-Indigenous children aged less than 4 years who had been breastfed. On the other hand, mothers of Indigenous children reported in the WAACHS that they were more likely to initiate breastfeeding and breastfeed for longer than mothers in the general population, particularly those living in more isolated areas [20].

Tobacco smoking

Smoking tobacco increases the risk of cardiovascular disease, some cancers, lung diseases, and a variety of other health conditions [19]. Passive smoking is also of concern to health, with children particularly susceptible.

Population surveys consistently reveal that the prevalence of smoking is higher among Indigenous people than among non-Indigenous people. The 2001 National Drug Strategy Household Survey, for example, found that 45% of Indigenous people aged 14 years or older smoked daily – more than twice the proportion of their non-Indigenous counterparts (19%) [144].

According to the 2002 NATSISS, just over half (51%) of the Indigenous population aged 15 years or older reported being smokers, a similar proportion to that reported in the 1994 NATSIS (52%) [11]. Similar proportions of men and women were current daily or regular smokers (51% and 47%). For both men and women, the highest levels were reported for those aged 25-44 years. In the WAACHS, the proportion of mothers of Aboriginal infants who used tobacco during their pregnancy was twice the level of mothers in the general population [20].

Alcohol use

Excessive alcohol use can contribute to liver disease, pancreatitis, diabetes, some cancers, epilepsy [12] and cardiovascular disease [19]. Alcohol use can also be a contributor to injury and violence [19]. Abstinence from drinking alcohol is advised for women when pregnant or breastfeeding [19]. Consumption in pregnancy can affect the unborn child leading to foetal alcohol syndrome (comprising abnormalities such as growth retardation, characteristic facial features, and central nervous system anomalies, including intellectual impairment) [145].

Surveys have shown consistently that Indigenous people are less likely to drink alcohol than non-Indigenous people, but those that do drink are more likely to consume it at hazardous levels [12]. According to the 2002 NATSISS, 15% of Indigenous people aged 15 years or older reported risky/high risk alcohol consumption in the previous 12 months (similar levels in non-remote and remote areas) [11]. The proportions were higher for Indigenous males than females (17% compared with 13%) and highest for males aged 45-54 years (22%) and for females aged 35-44 years (19%).

Use of other drugs

Illicit drugs (such as marijuana, heroin, ecstasy and cocaine), volatile substances (such as glue, solvent and petrol) and the non-medical use of prescribed drugs are risk factors for ill-health and can cause death [19]. In addition to the risk of drug overdose, illicit drug use can contribute to a variety of health conditions (for example, HIV/AIDS, hepatitis C virus, low birthweight, malnutrition, infective endocarditis, poisoning, suicide, and self-inflicted injury).

According to the 2001 National Drug Strategy Household Survey, around 57% of Indigenous respondents in urban areas aged 14 years or older reported having tried at least one illicit drug compared with 37% of non-Indigenous respondents [144]. The percentage of current users of cannabis among Indigenous respondents (13%) was higher than that of non-Indigenous respondents (8%).

Studies among non-random samples of Indigenous people who inject drugs have raised concerns about the young age at which injecting commences, and about the safety of injecting practices [146]. High frequencies of poly-drug use have also been reported among Indigenous injecting drug users in WA and SA [146, 147]. It has been estimated that the prevalence of injecting drugs increased in WA in the period 1994-2001: the percentage of Indigenous people who had ever injected was probably between 4.5% and 6% in 2001, with the percentage of current injectors between 3% and 4% [148].

Estimating the prevalence of petrol sniffing is difficult, because sniffing patterns are often cyclical and populations fluctuate [146]. Petrol sniffing had been reported mainly from communities in Arnhem Land , central Australia and the Goldfields region of WA [149]. There appears to be a shift recently in the geographic distribution of petrol sniffing, however, with a reduction in the Eastern Goldfields region of WA but endemic occurrence in the south-east Kimberley region of WA, in northern Queensland and in parts of central Australia and Arnhem Land [150].

Health expenditure

• Health expenditure
• Concluding comments
• Glossary
• Endnotes
• References
• Abbreviations

Estimated total expenditure by Australian governments and the private sector on health services to Indigenous people in the 1998-99 financial year was $1,245 million [151]. This is equivalent to $3,065 per person compared with $2,518 per person for non-Indigenous people – a ratio of 1.22:1 (this compares with a ratio of 1.08 in 1995-96 [152]). When relative income position is taken into account, public expenditure on the health of Indigenous people appeared to be similar to that for non-Indigenous people in low-income groups, despite the much lower health status of Indigenous people [151].

The majority of Indigenous health expenditure was allocated through mainstream health programs which generally do not, or only incompletely, document use specifically by Indigenous people [151].

Indigenous people were, on average, much higher users than non-Indigenous people of publicly funded health services and State-funded health services, particularly admitted patient services in hospitals and community health services [151]. Compared with non-Indigenous people, Indigenous people used fewer private services such as doctors in private practice, private hospitals, dentists, and privately funded allied health professionals.

The Commonwealth and State governments contributed very similar amounts to health services for Indigenous people [151]. Over 50% of the Commonwealth’s contribution was indirect through its contribution to public hospital funding. Expenditures were much lower for Indigenous people than for other Australians in the major Commonwealth-funded health programs, Medicare and the Pharmaceutical Benefits Scheme: per person expenditure for Indigenous people was 37% of that for non-Indigenous people.

The ratio of Indigenous to non-Indigenous service use would be lower than the expenditure ratio of 1.22:1 if the higher costs of providing services in remote areas could be factored in [151]. Access to Medicare-funded services and pharmaceutical benefits decreased as remoteness increased, but admitted patient expenditure increased with increasing remoteness.

After controlling for population and inflation, there were areas in which there had been increases in funding and service provision between 1995-96 and 1998-99 [151, 152]. However, the inadequacy of these levels of expenditure on Indigenous health was identified by a comprehensive review undertaken by the Commonwealth Grants Commission (CGC). The review concluded that ‘the poorer health status of Indigenous people, and their greater reliance on the public health [care] system, would justify at least a doubling of the average per capita expenditure on non-Indigenous people’ [153]. The CGC conclusion about the inadequacy of spending on Indigenous health services was matched by similar conclusions about expenditure on a number of health-related areas, such as education, training, employment, housing, and infrastructure [153]. In view of the importance to health of these ‘up-stream’ factors, the achievement of major gains in Indigenous health will require a much greater commitment by governments in many areas – not simply an increase in spending on health services.

Professor John Deeble has estimated that, on equity grounds (defined as access to equal health care resources based on equal health needs), the expenditure ratio for 1998-99 should have been 1.42 (that is, per capita expenditure for Indigenous people should have been 42% more than for non-Indigenous people) [154]. After taking account of changes in overall health expenditures up to 2001-02, additional funding for Indigenous health (improved access to Medicare and PBS benefits, and expansion of the Primary Health Care Access Program), Professor Deeble concluded that ‘about $250 million . would therefore remain a minimum estimate in the current shortfall in Indigenous health spending overall’ [154]. If this extra money was provided, the network of Indigenous-specific primary care services could be further expanded. However, as Professor Deeble points out, there would be logistical difficulties in staffing the new and expanded services, so considerable funds would initially have to go into capacity development and training.

More recent research undertaken for the Australian Medical Association (AMA) by Access Economics, one of Australia ‘s leading independent economic analysts, concluded that the increases in recent years in Indigenous health funding were ‘too slow to make any early inroads into the severe health problems among Indigenous Australians’ [155, p.18] . It was estimated that to redress the Indigenous health deficit funding for primary health care services alone required an additional $400 million per annum. The AMA estimated that a further $52.5 million was required annually for training-related costs to meet the need for more Indigenous and non-Indigenous health workers [156, 157].

Concluding comments

Indigenous people remain the least healthy sub-population in Australia , and there is evidence that the disparity between Indigenous and non-Indigenous health, at least measured by mortality, has widened in recent years [158]. The lack of real improvement in Indigenous mortality in Australia contrasts markedly with the situation among Indigenous people in New Zealand , Canada and the United States . The success achieved in those countries ‘generates considerable confidence that effective action in Australia will produce substantial changes in Indigenous health’ [158]. Achievement of these changes will require progress in five areas: infrastructure (including physical environmental and socioeconomic aspects); Indigenous self-determination of health services; access to a network of community-controlled primary healthcare services; an adequate level of resources; and a skilled workforce.

Substantial progress has been made in the past decade in some aspects of Indigenous health, and there have been improvements in some indicators of Indigenous health status [159]. As well, all Australian governments have made a commitment through the Council of Australian Governments to address the enormous disadvantages experienced by Indigenous people [160].

Within the health sector, the substantial increase in resources provided by the Commonwealth since 1995-96 has enabled consolidation and expansion of the Australia-wide network of Aboriginal community-controlled health services and of Indigenous-controlled substance-misuse services, and development of the role of NACCHO (National Aboriginal Community Controlled Health Organisation) in national advocacy and in support of Indigenous-controlled services [159]. The growth and development of NACCHO, its affiliates, and community-controlled health and substance-misuse services are significant advances, but, as pointed out by the CGC, the poorer health status of Indigenous people justifies further substantial increases [153].

The actual amount of extra funds required to enable Indigenous people get access to high quality, integrated primary health care services and to ensure progress towards an adequate, appropriate workforce are probably at least $450 million per year, the amount by which the AMA believes Indigenous health was under-funded in 2004 [157, p.2]. Funding increases of this order, complemented by the COAG developments and infrastructure progress, are essential to ensure that Australia doesn’t just keep ‘treading water on . Aboriginal and Torres Strait Islander health’ [157, p.2].

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The Australian Indigenous Health InfoNet attempts to contribute to improvements in Indigenous health by making relevant, high quality knowledge and information easily accessible to policy makers, health service providers, program managers, clinicians, researchers and the general community. We welcome your comments and feedback about this overview. Australian Indigenous HealthInfoNet Centre for Public Health Edith Cowan University 100 Joondalup Drive Joondalup , Western Australia 6027 Email: healthinfonet@ecu.edu.au Telephone: (08) 6304 5104 Facsimile: (08) 6304 5449

 

View Abbreviations

Endnotes

1. In 2002, the most recent year for which estimates are available, the number of deaths identified as Indigenous was only 55% of the number expected (ABS, 2003). The only jurisdiction with a reasonable proportion identified correctly as the Northern Territory (85%). The proportions for the other jurisdictions were: Victoria (41%, Queensland (56%), WA (62%), SA (59%) and Tasmania (22%). An estimate wasn’t available for the ACT.

2. A supplementary sample of 3,198 Indigenous people plus 483 included in the core NHS sample resulted in a total Indigenous sample of 3,681 (ABS, 2002).

3. The CDEP scheme offers unemployed Indigenous Australians the opportunity of working in community-managed projects and enterprises if they forego unemployment-related social security benefits.

4. The information summarised here has been extracted and/or derived from two main sources: the five-yearly Australian Census of Housing and Population (ABS, 2002); the 2001 Community Housing and Infrastructure Needs Surveys (CHINS), which collected information about housing in discrete Indigenous communities throughout Australia (ABS, 2002)

5. Information about discrete Indigenous communities – defined as geographic locations, bounded by physical or legal boundaries, and inhabited or intended to be inhabited predominantly (i.e. > 50% of usual residents) by Indigenous people, with housing or infrastructure that is managed on a community basis – was collected by the 2001 CHINS.

6. It should be noted that this maternal mortality ratio (MMR) is based on the direct and indirect deaths only, and excludes deaths to women where the cause was classified as ‘incidental’. As such, the MMR is not directly comparable with those calculated for previous three-year periods, which were presented for all maternal deaths (including incidental deaths) and for direct deaths.

7. In the ICD, cardiovascular diseases are referred to as ‘Diseases of the circulatory system’.

8. Information about rates of pancreas cancer were not available for Queensland

9. Specific information about the deaths from cancer is not available for Queensland and SA.

10. The age-standardised rate for Indigenous women in the NT in 1997-2000 was around 14 deaths per 100,000, but, being calculated using the 2001 Australian ERP, is not comparable with the other age-standardised rates that were calculated using the World Standard Population.

11. Hepatitis B is the main risk factor for primary liver cancer.

12. The module of mental health questions used in the general NHS, the Kessler Psychological Distress Scale 10 (K-10), was omitted from the Indigenous supplement as it was not considered culturally appropriate.

13. The ICD chapter ‘Mental and behavioural disorders’, used for the classification of both hospitalisation and mortality, is very broad. As well as mental illness and mental health problems, it includes mental retardation and a broad sub-category for disorders relating to the use of psychoactive substances (including alcohol, tobacco, other drugs and volatile substances). The chapter doesn’t include, however, the results of intentional self-harm, which are classified within the ICD chapter ‘External causes of morbidity and mortality’.

14. Renal (and urologic) disease includes conditions affecting the function of the body’s urinary system, which involves the kidneys, ureters, bladder and urethra.

15. Details of new cases of ESRD are collected and collated by the Australian and New Zealand Dialysis and Transplant Registry (ANZDATA). The figures presented in Table 17 have been derived from data provided by ANZDATA.

16. It is possible that some of this increase may reflect under-reporting by respondents to the 1994 NATSIS.

17. See Burns et al., 2003 for details.

18. These jurisdictions are the only ones with reasonable levels of identification of Indigenous people in notifications. Indigenous rates have been compared with those for all other people, including those for whom Indigenous status was not known.

19. Note figures have not been adjusted for reporting delay. The figures quoted here are aggregated nationally, and may conceal differences across Australia, particularly between rural/remote and urban areas, for which the patterns may be quite different (see 94 Skov S, Bowden F, McCaul P, Thompson J, Scrimgeour D (1996) HIV and isolated Aboriginal communities. Medical Journal of Australia;165:41-42 ).

20. Defined as less than the third percentile of World Health Organization reference values.

21. As with all areas of Indigenous health, there is considerable diversity in the impact of ear disease among Indigenous people across Australia . In particular, ear disease has not been identified as a major problem among Torres Strait Islander people. The patterns described in this section do not apply to all Indigenous people, but they are characteristic for many Indigenous communities, particularly those in remote parts of the country.

22. Some literature suggests that chronic discharge may lead also to sensorineural hearing loss (Couzos et al., 2003). Sensorineural hearing loss is permanent and is commonly caused by nerve damage that impedes the transmission of sound from the inner ear to the brain. When conductive and sensorineural hearing loss coexist, the hearing loss is referred to as ‘mixed’.

23. As noted in the section entitled ‘Hospitalisation’, it is likely that the Australia-wide numbers and rates under-estimate Indigenous hospitalisation by as much as 25%.

24. The study did not include Indigenous people living in institutions.

25. Bearing in mind the generally higher levels of some risk factors documented for Indigenous people living in more remote parts of Australia, the levels of disability among Indigenous people in the Taree area may well be lower than in at least some other parts of the country.

 

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Abbreviations

 

ABS	Australian Bureau of Statistics
ACCHS	Aboriginal community-controlled Health Service; see also AMS
ACEi	Angiotensin-converting enzyme inhibitor
ACT	Australian Capital Territory
AHS	Australian Housing Survey
AIDS	Acquired immune deficiency syndrome
AIHW	Australian Institute of Health and Welfare
AMA	Australian Medical Association
AMS	Aboriginal Medical Service; see also ACCHS
ANCARD	Australian National Council on AIDS and Related Diseases
ANZDATA	Australia and New Zealand Dialysis and Transplant Registry
ASCO	Australian Standard Classification of Occupations
ASGC	Australian Standard Geographical Classification
ATSIC	Aboriginal and Torres Strait Islander Commission
BMI	Body mass index
CDEP	Community Development Employment Projects scheme
CGC	Commonwealth Grants Commission
CHINS	Community Housing and Infrastructure Needs Survey
COAG	Council of Australian Governments
CSOM	Chronic suppurative otitis media
CVD	Cardiovascular disease
dB	Decibel
DMFT	A count of the sum of teeth (T) that are decayed (D), missing due to caries (M), and filled due to caries (F)
dmft	A count of the sum of deciduous (baby) teeth (t) that are decayed (d), missing due to caries (m), and filled due to caries (f)
ERP	Estimated resident population
ESRD	End-stage renal disease
GAS	Group A streptococcus
HAV	Hepatitis A virus
HBsAg	Hepatitis B surface antigen (a serological marker for HBV)
HBV	Hepatitis B virus
HCV	Hepatitis C virus
Hib	H. influenzae type b
HIV	Human immunodeficiency virus
HPV	Human papilloma virus
ICD	International Classification of Diseases – the World Health Organization’s internationally accepted classification of death and disease
ICDH	International Classification of Disability and Handicaps
ICF	International Classification of Functioning, Disability and Health
IDDM	Insulin-dependent diabetes mellitus
IHO	Indigenous Housing Organisations
IPD	Invasive pneumococcal disease
ISDR	Indirectly standardised death rate
IV	Intravenous
LBW	Low birthweight
mmol/L	Millimoles per litre
MMR	Maternal mortality ratio
NACCHO	National Aboriginal Community Controlled Health Organisation
NATSIS	(1994) National Aboriginal and Torres Strait Islander Survey
NATSISS	(2002) National Aboriginal and Torres Strait Islander Social Survey
NHMRC	National Health and Medical Research Council
NHS	National Health Survey
NIDDM	Non insulin-dependent diabetes mellitus
NNDSS	National Notifiable Diseases Surveillance System
NSW	New South Wales
NT	Northern Territory
OATSIH	Office for Aboriginal and Torres Strait Islander Health
OATSIHS	Office for Aboriginal and Torres Strait Islander Health Services – the former name of OATSIH
OM	Otitis media
Qld	Queensland
RR	Rate ratio- usually in this publication the Indigenous rate divided by the non-Indigenous rate
SA	South Australia
SMR	Standardised mortality ratio
STD	Sexually transmitted disease; see STI
STI	Sexually transmitted infection
Tas	Tasmania
UK	United Kingdom
UNICEF	United Nations International Children’s Emergency Fund
UV	Ultraviolet
Vic	Victoria
WA	Western Australia
WAACHS	Western Australian Aboriginal Child Health Survey
WHO	World Health Organization