Aboriginal people with disabiliy: unique approaches to unique issues



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ABORIGINAL PEOPLE WITH DISABILIY:

UNIQUE APPROACHES TO UNIQUE ISSUES
Prepared by Kerry Stopher and Heather D’Antoine
  1. ABSTRACT

This paper highlights four inter-related factors which must be addressed to achieve effective support and services for Aboriginal people with disability, their families and carers; (1) General characteristics of the Aboriginal population, (2) Characteristics of the policy environment, (3) Disability characteristics of the Aboriginal population, and (4) Access to disability-related services. Although the root causes for many of these issues are complex and historical, understanding the issues is fundamental to providing substantive equality in services to Aboriginal people. The current policy environments in relation to Aboriginal and disability issues at national and state levels provide a good foundation to build and develop future directions for Aboriginal people. The paper purports that there is sufficient knowledge about each of the above four factors to develop effective strategies for Aboriginal people and acknowledges that many of these strategies are already enshrined in national and disability frameworks and being integrated into service provision. Notwithstanding, this paper strongly advocates new and quantum-leap approaches to addressing key issues over the long term. A ‘business as usual’ approach, no matter how well-intentioned, is unlikely to achieve significant gains at national or state levels for disability, health and related areas.



  1. INTRODUCTION

The Aboriginal1 population is a culturally diverse population with numerous language groups spread across the state. Aboriginal people comprise 3.8% of the total population in Western Australia (WA) and are more evenly distributed across WA than the general population (Australian Bureau of Statistics (ABS), 2008).


Recent Disability Services Commission (Commission) data on service use shows that 1216 (1.5%) Aboriginal people in WA with a disability access disability funded or provided services (Disability Services Commission, 2008). Although numbers have increased from around 700 (1.1%) three years ago to the current figure, the number of service users is significantly lower than estimates based on national data suggesting that around 9% of Aboriginal people over 15 years of age have a disability. Although a portion of the higher percentage may reflect those people who have acquired a disability after 65 years of age, therefore not being eligible for state funded disability services, it is nevertheless likely that a much greater number of Aboriginal people with a disability in WA may be eligible for disability services but, for some reason are not accessing services.
Four inter-related factors or groups of issues must be addressed to achieve effective support and services for Aboriginal people with disability, their families and carers. Section 3 describes each of these groups and associated issues. Section 4 outlines strategy development and implementation that needs to occur to address these issues over the coming 15 to 20 years.
In reporting data and discussing key issues, this paper draws on four main sources:

  • Addressing the unique needs of Indigenous and Torres Strait Islanders people with disability in Western Australia undertaken by the Disability Services Commission and Edith Cowan University between 2002 and 2004. The report included a literature review and an overview of statewide consultations with 312 Aboriginal people with disabilities, their families, carers and service providers across Western Australia. This report is referred to as the WA statewide report or WA statewide consultations.

  • Building Culturally Secure Disability Services for Indigenous Australians, a national report prepared for the Disability Policy & Research Working Group (DPRWG) by Swinburne University of Technology (TAFE Division Indigenous Programs) in 2006 and 2007. A literature review and cross-jurisdictional consultations occurred in the preparation of this report. This report is referred to as the Swinburne report.

  • The Council of Australian Governments (COAG) Addressing Indigenous Disadvantage (2007) report. This report is referred to as the COAG 2007 report.

  • Western Australian Aboriginal Child Health Survey volume four: Strengthening the capacity of Aboriginal families and their community. This report is referred to as the WA Child Health Survey.



  1. KEY FACTORS AND ISSUES

The factors and issues that affect Aboriginal people with a disability and their family can be grouped broadly into four areas; (1) General characteristics of the Aboriginal population, (2) Characteristics of the policy environment, (3) Disability characteristics of the Aboriginal population, and (4) Access to disability-related services. Together these factors, or drivers, influence the way in which Aboriginal people identify and respond to disability and the way in which service providers respond to Aboriginal people with disability, their families and carers. The four factors and their related issues are shown in Figure 1.

There are many ways that Aboriginal people, their families and carers, along with the general population, receive support for disability. Support may be derived from informal sources including family, friends and community. Informal support may be complemented by formal disability-related services provided by a range of government funded or provided agencies, for example the Department of Housing and Works (DHW) or the Department for Education and Training (DET). State specialist disability services are funded or provided by the Commission. This paper acknowledges the complementary nature of all supports and the need for formal services, regardless of their source, to be responsive to Aboriginal cultural, individual and family priorities and to work collaboratively with each other and Aboriginal people.


Figure 1: Key Factors and Issues


4. Access to Disability-related Services

  • Availability

  • Affordability

  • Acceptability

1. General Characteristics of the Aboriginal Population

  • Aboriginal worldview

  • Diversity

  • Capability

  • Demographics




2. Characteristics of the Policy Environment

  • Past policy environment

  • Current national policy environment

  • Disability Services Commission policy and practice



3.1 FACTOR 1: THE ABORIGINAL POPULATION


The Aboriginal population is different to the general population in many ways; in the way they view the world, in their diversity, in their population demographics, and in their capability.

3.1.1 Aboriginal Worldview


People’s constructs of health are shaped by the way they view the world. Rev Maori Marsden describes worldview as ‘ …the central systematisation of conceptions or reality to which members of its culture assent and from which stems their value system (cited in Te Ahukaramu Charles Royal, 2002).
An Aboriginal view sees people as integral to the world with humans having a seamless relationship with nature which includes seas, land, rivers, mountains, flora, and fauna (Te Ahukaramu Charles Royal, 2002). In Australian Aboriginal society the kinship system and attachment to land is an important part of Aboriginal worldview. This view will affect how Aboriginal people construct concepts such as disability which will consequently influence the way they would like services provided.
The WA statewide report stated that, as with many aspects of Aboriginal life before the colonisation of Australia, little is known about Aboriginal perceptions and levels of disability, or the ways in which people with a disability were cared for by others. Given the diversity in Aboriginal culture and language, it is likely that disability may have been conceived and responded to in a variety of ways. The limited research since colonisation suggests that there may not have been a generic term ‘disability’ in some Aboriginal cultures, that people were referred to as having a specific impairment or ‘sickness’ that prevented them doing certain tasks, but that they were still involved in the kinship system with roles and responsibilities. In support of this argument it was found that introducing the generic term, ‘disability’, has been a devaluing experience for some Aboriginal people living in the central Australian desert.
The statewide consultations supported findings in the literature. Although many Aboriginal people were familiar with a range of health concepts, they were not familiar with the construct of disability as understood in Western culture. Aboriginal families considered themselves to be accepting and supportive of family members who had a disability and people with disabilities were reported to be included within their extended families. Two consultation quotes provide examples.

Noongars use the term ‘winyarn’. This is not patronising but an accepting term. (Metropolitan participant)


The Aboriginal community is more accepting of people with disabilities. (Metropolitan participant)

3.1.2 Diversity of the Aboriginal population


The Aboriginal population is diverse in culture. Prior to colonisation, there were approximately 250 languages spoken throughout Australia with an estimated population of 750,000 people made up of 500 clan groups or nations (Department of Indigenous Affairs website). Although many of the language groups have been lost, the WA Aboriginal people continue to have a diversity of language groups with important cultural differences between groups.

3.1.3 Capability of the Aboriginal population


The WA Aboriginal Child Health Survey involved a population survey of Aboriginal children, their family and community. The concept of ‘human capability’ is described as ‘the capacity of populations to collectively improve their health, wealth, knowledge and cultural security, and the opportunities to facilitate these improvements’ (WA Child Health Survey, Volume 4, p/44). In the context of this work, the population characteristics that influence human capability in the Aboriginal population when compared to the general population include; a lower life expectancy, a younger population, higher fertility rates, lower adult to child ratio, higher rates of single parents and higher rates of imprisonment.
The capability of the Aboriginal population is also reflected in the COAG 2007 report which stated that ‘across virtually all the indicators in this Report, wide gaps remain in outcomes between Aboriginal and non-Aboriginal Australians. Life expectancy of Aboriginal people is estimated to be around 17 years lower than that for the total Australian population. Despite compulsory education, Aboriginal students at all levels experience much worse outcomes than non-Aboriginal students. And Aboriginal people are significantly over-represented in the criminal justice system, as both victims and offenders.’

3.1.4 Demographics of the Aboriginal population


An estimated 77,928 Aboriginal people or around 15% of the total Aboriginal population live in WA, making-up a small proportion (3.8%) of the total population for this state (ref). It is also a young population; 39% of Aboriginal people are less than 15 years and only 13% aged 65 years or more (ABS, 2008).
More than one-third of Aboriginal people live in the Perth Metropolitan area, where they comprise 1.6% of the total population, followed by the Kimberley region with 23% of the State’s Aboriginal population. In Western Australia 42%, a relatively high proportion of Aboriginal people, live in remote or very remote areas (ABS, 2008). Hence, the Aboriginal population in WA is more evenly distributed throughout the state than the non-Aboriginal population.
3.1.5 Summary and implications

This section has raised four critical areas that impact on the effective delivery of services to Aboriginal people. The worldview of Aboriginal people is fundamentally different to non-Aboriginal people and includes the way in which disability is viewed and integrated within society. In addition, worldview and response to disability will vary according to particular language groups. The geographic spread of Aboriginal people across WA re-emphasises the need for effective rural and remote service responses alongside urban responses. Age and life-span differences between Aboriginal and non-Aboriginal people imply there may be a decreased number of older carers available to care for people with disabilities. The overall capability of the Aboriginal population to respond effectively to a multitude of issues including disability is also a key factor influencing culturally responsive service development.



3.2. FACTOR 2: THE POLICY ENVIRONMENT

3.2.1 Past policy environment


The lives of Aboriginal people have been shaped and affected by past government policies that have institutionalised, assimilated and disempowered Aboriginal people. Although the disability sector may not have initiated these policies they, along with other government services, bear the legacy of their effect whereby many Aboriginal people are distrustful and fearful of government services and pass this information through generations. This was strongly illustrated in the WA statewide consultations as shown in the following quote.
There were bad experiences in the past for Aboriginal people. White people need to understand that Aboriginal people have had a hard time and are still going through it. There’s that fear to work with Wadjellas and government agencies. (Wheatbelt participant).

3.2.2 National policy environment


The current national policy environment provides a matrix of opportunities for Aboriginal people and their families.
The COAG have adopted a strategy, Overcoming Indigenous Disadvantage, to address Aboriginal disadvantage in three major areas. Each area must be addressed simultaneously at societal, community and individual levels:

  • Health - Safe, healthy and supportive family environments with strong communities and cultural identity;

  • Social - Positive child development and prevention of violence, crime and self-harm; and

  • Economic - Improved wealth creation and economic sustainability for individuals, families and communities.

Twelve ‘headline’ indicators have been identified to measure the significant gaps between non-Aboriginal people, who are relatively advantaged on each indicator, and Aboriginal people who are relatively disadvantaged (see COAG 2007 report). The indicators and the current ‘gaps’ between Aboriginal and non-Aboriginal people are shown in Table 1. Progress on each measure is assessed biennially with examples of good practice from each jurisdiction provided.


Table 1: Headline indicators and examples of gap data (COAG 2007 report)


Headline Indicator

Examples of Gap Data

Life expectancy at birth.

17 years lower than that for the total Australian population (2005).

Disability and chronic disease.

In non-remote areas Aboriginal adults were twice as likely to report a disability (2002).

Years 10 and 12 retention and attainment.

21% of 15 year old Aboriginal people versus 5% of 15 year old non-Aboriginal people were not participating in school education (2006).

Post secondary education – participation and attainment.

The proportion of Aboriginal people in post secondary education, with a qualification of certificate level 3 and above has significantly increased since 1994. However, non-Aboriginal people were more than twice as likely to have completed a post secondary qualification (2004-05).

Household and individual income.


Median (mid point) income was $340 for Aboriginal households compared to $618 for non-Aboriginal households (2004-05).

Over half of Aboriginal people received most of their individual income from government pensions and allowances.



Home ownership.


27% Aboriginal adults versus 74% non-Aboriginal adults lived in houses owned or being purchased by a member of the household (2002).

Labour force participation and unemployment.

The unemployment rate for Aboriginal people was about 3 times the rate for non-Aboriginal people (2004-05).

Suicide and self-harm.


Suicide death rates were higher for Aboriginal people (between 19 and 45 per 100 000 population than non-Aboriginal people (between 11 and 16 per 100 000 population) from (2001-2005).

Substantiated child abuse and neglect.

Aboriginal children were nearly 4 times as likely as other children to be the subject of substantiated abuse or neglect (2005-06).

Deaths from homicide and hospitalisations for assault.

Homicide rate for Aboriginal population was 5 to 15 times the rate for the non-Aboriginal population (2001-2005). Aboriginal people hospitalised for assault was 17 times the rate of non-Aboriginal people (2004-05).

Family and community violence.


Comparable data not currently available, however available data suggests Aboriginal people are more likely to be the victims of domestic violence related assault.

Imprisonment and juvenile detention rates.

Aboriginal people were 13 times more likely than non-Aboriginal people to be imprisoned (2006). Aboriginal juveniles were 23 times more likely to be detained.

Providing further strength for the COAG framework, the National Government embraced a CloseTheGap statement of intent at the Indigenous Health Summit that health inequalities will be bridged by 2030 (Human Rights and Equal Opportunity Commission, 2008). It is the authors’ opinion, however, that there needs to be a strong accountability system developed in relation to jurisdictional implementation of the policy framework to ensure the gap in headline indicators is significantly reduced over the next decade. The reporting of jurisdictional ‘best practice’ is not sufficient to ensure wide-spread effective implementation.


3.2.3 Disability policy environment

Within WA, the Commission has undertaken statewide consultations with Aboriginal people, their families, carers and service providers and responded to many of the issues raised by developing the Access for Aboriginal People with Disabilities Policy and Practice Plan, the Getting Services Right package and the Reconciliation Action Plan (RAP. These initiatives provide a strong foundation for developing culturally responsive services, partnerships across government, with corporations and Aboriginal communities. The state disability policy environment is contextualised within a state government commitment to the implementation of substantive equality and Aboriginal reconciliation across government services.


3.2.4 Summary and implications

The legacy from earlier government policies in WA has resulted in lack of trust and willingness for many Aboriginal people to engage with current government services, including disability-related services. Contemporary policy environments at both national and state levels are constructive and offer opportunities for redressing earlier legacies and moving forward to close the significant gaps between Aboriginal and non-Aboriginal people. Greater accountability for jurisdictions to implement the national Overcoming Indigenous Disadvantage framework and state frameworks is needed.




3.3 FACTOR 3: DISABILITY CHARACTERISTICS OF THE ABORIGINAL POPULATION


The following issues relate to disability characteristics of the Aboriginal population and include ascertainment of Aboriginal people with a disability, profile of disability within the Aboriginal population, service usage of Aboriginal people, and unmet need and potential demand for services.

3.3.1 Ascertainment2


Data collected on the number of people using services funded or provided by the Commission shows that around 1216 (1.5%) Aboriginal people in WA currently access disability funded or provided services. It is likely, however, that a much greater number under the age of 65 years may be eligible for services. The National Aboriginal and Torres Strait Islander Social Survey (NATSISS, 2002) provided for the first time more accurate information about disability across Australia. In terms of prevalence of disability, it found that around 38% of Aboriginal people 15 years and over identified as having a disability or long-term health condition, however the definition of disability used was much broader and inclusive than the WA definition. Using criteria similar to those used in WA, approximately 9% identified as having a profound or severe core activity limitation. Due to methodological issues, however, ‘these estimates of disability or long-term health condition underestimate the likely prevalence of disability’ (ABS, Australian Social Trends 2006).
3.3.2 Service Usage

Approximately 20,750 people with disabilities, or around one-third of people who have a disability in WA, use services funded or provided by the Commission. Aboriginal people comprise 5.8% service users which appear to have increased from 4.6% over the last three years, although the increase may partly be due to improved identification of Aboriginal people and revised data collection approaches.


Consistent with trends in WA population distribution, a greater percentage of Aboriginal people with disabilities live in rural and remote locations, the opposite trend to non-Aboriginal people with disabilities. The percentage of Aboriginal and non-Aboriginal people using various types of specialist disability services is similar. Eight percent more Aboriginal people use Local Area Coordination which is not surprising given this is the main service provided by the Commission in country areas.
3.3.3 Profile of Disability

National data cited in the Swinburne report indicated that intellectual disability and developmental delay account for the main disability type for Aboriginal people, which is also the case for non-Aboriginal people with disabilities. Aboriginal people, however, had higher disability rates for all disability types when compared to non-Aboriginal people. The difference was greatest for intellectual disability, with Aboriginal people nearly four times more likely to be limited by an intellectual disability than non-Aboriginal people. Aboriginal people were more likely to have two or more disability types than non-Aboriginal people.


Aboriginal people had similar levels of severe core activity limitation (disability) from age 45 years that non-Aboriginal people show at 65 and over (see Figure 2). This is consistent with the view that Aboriginal people show signs of ageing at an earlier age, which may be reflective of the additional strain and stresses that Aboriginal people, when compared to non-Aboriginal people, experience.

3.3.4 Unmet need and potential demand for services


The COAG 2007 report observed that although data is not available to identify the level of unmet disability need in Aboriginal communities, it is likely to be high. In WA, approximately twice as many Aboriginal people with disabilities use specialist disability services from the Commission as a proportion of the population as do non-Aboriginal people, however, in light of the NATSISS survey and other studies, there may be significantly greater demand for services over the next 15-20 years due to:

  • increased incidence of Aboriginal disability as a result of the effects of Foetal Alcohol Syndrome (O’Leary, 2002 and the Swinburne report), substance misuse in young people (COAG 2007 report) and cognitive and physical disabilities developed after motor vehicle accidents and family violence; and

  • growing awareness and detection of Aboriginal disability associated with the above areas and for Aboriginal people with disability in the justice system (Swinburne report).

Figure 2: Age-specific rates of profound or severe core activity limitation, persons aged 18 years and over – 2002. (cited in the Swinburne report, 2007)



Although the demands on services may not be great in terms of additional numbers of Aboriginal people seeking assistance (due to the relatively small population of Aboriginal people), a modest increase in demand compounded with the need for culturally responsive services to address complex needs collaboratively with Aboriginal people and other agencies, implies the need for innovative, focussed and well-resourced strategies.
3.4.5 Summary and implications

It is likely that there is a significantly larger number of Aboriginal people who have a disability but are not using disability-related services. There may be future increased demand for services with increases in knowledge of and identification of Aboriginal people with disabilities, for example children with Foetal Alcohol Syndrome and Aboriginal people with disabilities in the justice system. Aboriginal people have different profiles of disability which require unique responses.




3.4 FACTOR 4: ACCESS TO DISABILITY-RELATED SERVICES
Access is a dimension that includes availability (sometimes referred to as physical access), affordability (often referred to as financial access) and acceptability (sometimes referred to as cultural access), (see Thieda et al, 2007).
3.4.1 Availability

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.3 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 raised in the WA statewide report relating to the provision of services to isolated areas of Australia are:

  • 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; and

  • the complexity of providing specialist services to the relatively small number of people with disabilities living within geographic regions including therapy services, home help and personal care, respite and special education.

The statewide consultations found, for example, that access to therapy and specialised equipment was identified as a major problem for Aboriginal people living in the remote Kimberley region. This was due to a number of factors including geographical distance, difficulties of access during the wet-season, lack of therapy staff and workers to repair equipment (services provided by the Department of Health), large therapy staff turn-over and lack of therapy approaches that are adapted to remote areas.
The Commission has been acutely aware of the difficulties of providing specialist disability services to people living in rural and remote areas and has sought to complement the statewide Local Area Coordinator (LAC) network with a range of strategies including:

  • funding and training family support services in rural and remote areas to provide culturally responsive services and actively engage Aboriginal people across their contracted geographical area;

  • adopting cross-agency approaches to service provision in remote communities, for example funding Home and Community Care services to provide additional specialist disability services;

  • employing Aboriginal workers in remote Aboriginal communities to complement the visiting Local Area Coordinator service and to provide respite and other services;

  • assisting with development of the Aboriginal therapy assistant model to enable more effective provision and follow through of therapy to remote communities which receive 6-weekly visits or less; and

  • appointing Aboriginal staff in supervisory and local LAC positions in areas of high Aboriginal density.

Despite these strategies being apparently sound in principle, many barriers are faced in their implementation and sustainability. It is the authors’ observation that many difficulties relate to the inability of the Commission and other agencies to recruit, retain and appropriately support both non-Aboriginal and Aboriginal employees in remote areas. This issue is discussed further in 3.2.3.


3.4.2 Affordability

Affordability of services was not raised as a major issue in the WA statewide consultations, although some participants raised the issue that that the additional costs associated with health and disability issues, for example pharmaceutical products, and the increased costs in some remote areas during tourist season, place financial strain upon many Aboriginal families who live in poverty.


The Western Australian Aboriginal Child Health Survey reported on the financial strain of Aboriginal families. The survey found that over half of the children surveyed were living in families which were either spending more than they received or which had just enough money to get by. Therefore, agencies providing disability-related services need to ensure that, in providing services and programs to Aboriginal families, they do not add to existing financial strain.
3.4.3 Acceptability

This is probably the most complex and difficult to measure component of access. The WA statewide consultations found that services to Aboriginal people with disabilities, both mainstream and disability, were generally not considered to be culturally responsive. This aspect will be discussed under five sections: (1) disability is one of multiple issues, (2) general service responsiveness, (3) responsiveness to carers of people with disability, (4) availability of advocates to increase service responsiveness, and (5) availability of Aboriginal employees in the disability workforce.


(1) Disability is one of multiple issues


The WA statewide consultations found that many Aboriginal families were reported to face one or more significant issues in addition to disability including health, mental health, substance abuse, housing, education, employment, justice and financial issues. Participants stated that disability cannot be addressed in isolation and that, at certain times, issues such as housing, chronic health and financial issues may be of higher priority to an Aboriginal family than disability-specific issues.
Of additional concern to Aboriginal people and other stakeholders in WA was the poor communication and ‘silo approach’ between agencies working with the same families on different issues. Aboriginal-specific agencies reported that they often take a lead role in addressing poor coordination between agencies, even though they are not funded for this function.
Both the COAG 2007 report and the WA Child Health Survey reported that Aboriginal adults and children experience increased levels of stress when dealing with multiple critical issues. Approximately 27% of Aboriginal adults experience high to very high levels of distress compared to 13% of non-Aboriginal adults. The COAG 2007 report suggested that high levels of adult ‘personal stressors’ are likely to contribute to the development of long term health conditions. In addition, the WA Child Health Survey identified life stress events as the factor most strongly associated with high risk of clinically significant emotional or behaviour difficulties in Aboriginal children. Over one in five Aboriginal children in WA were found to be living in families where seven to 14 major life stress events, including death, imprisonment, violence and severe hardship, had occurred in the 12 months prior to the survey.
(2) General service responsiveness

Participants in the WA statewide consultations reported that:



  • non-Aboriginal staff did not generally have an appreciation of the historical racism and segregation experienced by Aboriginal families which is passed from generation to generation and results in current Aboriginal reticence to approach and participate in government services;

  • there were insufficient numbers of Aboriginal staff visible within agencies to signal to Aboriginal consumers that the services provided were culturally responsive;

  • many aspects of service provision including information provision, registration and assessment procedures, and therapy services were not adapted to the needs of Aboriginal people;

  • offices did not signal a welcome to Aboriginal people by displaying Aboriginal art or having Aboriginal people at reception; and

  • services were not generally co-located with Aboriginal agencies in areas where Aboriginal people felt welcome to go.

Several consultation quotes illustrate these issues.


Non-Aboriginal people don’t understand the ways of Aboriginal people. They should learn. (Metropolitan participant).
Aboriginal people are reluctant to use services as they feel they are for whitefellas (Wheatbelt participant).
Wadjellas have got ways of talking that Noongars don’t understand. (Lower Great Southern participant).
My daughter’s Aboriginality comes before her disability. It is very important to me that service providers understand that she is Aboriginal first and then has a disability. (Metropolitan participant).
(3) Responsiveness to carers

Participants in the WA statewide consultations acknowledged the great strength of Aboriginal groups in supporting family members, but also raised concerns that Aboriginal family carers are often overburdened with responsibility, and in danger of being burnt out without adequate support. Many Aboriginal people prefer to keep care within the family rather than to use non-family respite carers. This results in competent family carers providing practical, financial and advocacy support to a range of family members who have parenting, health, ageing and disability-related needs.


Aboriginal carers don’t have anyone to cover their family responsibilities when they accompany a family member with a disability to Perth (Mid West service provider).
Family members provide support. In our house there are three generations – they all provide care to my two sons. The family felt because of this we did not need a lot of contact with disability services. (Goldfields participant).
Aboriginal carers, particularly in remote areas, also have cultural and ceremonial responsibilities, requiring them to travel away from their homes and to leave their family member with a disability in the care of others.

Participants noted that many families caring for a person with a disability were not aware of the supports available, including various respite options, or even where to go to find out about support services. In addition, Aboriginal carers, especially in remote areas, required respite services to be culturally appropriate in terms of providing an Aboriginal support worker of the same language group and safe, local respite facilities.

Families are not aware of services and are taking care of people with disabilities without knowing what help there is. There needs to be more information given to families. (Kimberley: service provider)
Aboriginal people with disability are often carers themselves. Of some 26,000 Aboriginal people nationally who had main caring responsibility for children aged 12 years or less, approximately 32% had a disability or long-term health condition, and around 17%, or one in six, had a profound or severe core activity limitation. In remote areas 50% of females with a disability or long-term health condition were carers of children compared to 36% in non-remote areas (NATSISS, 2002).

(4) Provision of advocacy for Aboriginal people with disabilities


In the WA statewide consultations, participants identified the need for strong advocacy in relation to Aboriginal people with a disability and their carers, many of whom do not speak English well or understand government systems, and are reticent in their dealings with government and other agencies. This is exemplified in the following quotes.
I provide support to an Aboriginal adult living independently in a flat. He has had difficulty getting a taxi as he appears drunk (due to his disability) and is Aboriginal. He has also been arrested by police as he appears violent (due to his disability) and is Aboriginal. He has had his belongings stolen in boarding houses, been taken advantage of by caretakers, and then evicted. (Metropolitan service provider).
Government services don’t reach out to Aboriginal people and advocate for their needs. (Metropolitan participant).

Advocacy services are a shared government responsibility; the Commonwealth funds individual advocacy and the states/territories fund systemic advocacy. In 2005–06, the Commonwealth provided funding to 71 organisations across Australia through its National Disability Advocacy Program (NDAP). After a recent review of the policy and funding context for the provision of the NDAP it was concluded, in relation to Aboriginal people, that the distribution of advocacy services did not match the population distribution of states and territory and that Aboriginal people with disability were not well catered for. To address the specific needs of these groups, ‘advocates need a thorough grasp of the issues facing people with different types of disability and should be able to call on expertise if necessary.’ (Social Options Australia Report, 2005 cited in the Swinburne report).



The Swinburne report concluded that the disability services sector needs to make a distinction between their roles as service providers and case managers as opposed to advocates. Many disability-service providers, across all fields and within mainstream and community controlled sectors, were reported to view advocacy as part of their role where it was, in reality, case management follow-through or information sharing with community members.
In the community controlled sector where family and kinship relationships are complex, Aboriginal people with disabilities expressed the view that advocacy must be independent of service providers, but work in partnership with them to raise awareness about rights, entitlements, referral options and service standards. Currently, Aboriginal advocacy is under-resourced and ad hoc (Swinburne report).
It is not yet clear whether these reports will widely influence the provision of formal, independent and effective advocacy services to Aboriginal people with disabilities across Australia. Whatever the outcome, it is likely that many Aboriginal people with disabilities, especially in remote areas, will not easily access independent advocacy. In the absence of independent advocacy and given that many services will take years to develop and implement culturally responsive strategies, it is the author’s opinion that service providers of disability specialist and disability-related mainstream services could embrace the following:

  • Acknowledge that many Aboriginal people will find, despite the best intentions of service providers, aspects of disability service provision to be difficult to understand or implement given their family, cultural and local historical context.

  • Acknowledge that most Aboriginal people in this situation will be unlikely to express their lack of understanding or dissatisfaction to service providers.

  • In light of the above, ensure that Aboriginal people with disabilities, their families and carers are strongly encouraged to invite anyone they nominate from family, community or Aboriginal service providers to accompany them to appointments with the role of supporting them to understand information given, to yarn about, clarify and question information both at the appointment and at later meetings.

  • In light of the above, also ensure that an interpreter is available when needed. Again this role could be combined with dot point 3 in areas where interpreters are not easily obtained and the person with a disability and family are able to nominate a person who can assist.

(5) Employing Aboriginal people in the disability workforce


Developing and sustaining an Aboriginal workforce is viewed as a major component to provide effective services to people with a disability. One of the key recommendations arising from the WA statewide consultations was that agencies providing services to Aboriginal people should increase their Aboriginal workforce for both genders and at all levels within an agency. In addition, opportunities should be created for Aboriginal representation on boards and committees.

Need to use Aboriginal resources (staff) to break down barriers. The employment of local people in agencies would encourage Aboriginal people to access services. (Kimberley participant)

Building an Aboriginal workforce has challenges. Aboriginal people in remote areas face difficulties including lack of basic education, inability to engage in and sustain western-style employment due to cultural and family responsibilities, overcrowding in housing that does not support routine employment, pressure of multiple health, alcohol and other issues affecting families. Consultations with the manager of Wunan Foundation based in Kununurra, an organisation which supports Aboriginal people in work preparation, job seeking and retention, indicated that a comprehensive and dedicated approach over the long term is required to address this issue (Stopher and Murphy, 2007).

In relation to professional positions, the Swinburne report found that there were very few Aboriginal people studying disability-related courses and/or achieving qualifications in related allied health fields. They cited the Productivity Commission’s health workforce report, for example, which found Aboriginal people make up 2.4% of the Australian population, yet they make up only 0.9 per cent of the total health workforce. Table 2, derived from the National Allied Health Workforce Report, June 2004, shows the low number and percentage of Aboriginal and Torres Strait Islander allied health professionals for selected disciplines



Table 2: Number and percentage of Indigenous professionals for selected allied health disciplines (cited in the Swinburne report)

Allied health professions

Indigenous professionals

Total workforce

% of indigenous professionals

Dietetics

20

1,996

1

Medical Imaging

21

8,322

0.25

Occupational Therapy

6

5,339

0.09

Esthetics

0

356

0

Physiotherapy

32

10,255

0.3

Podiatry

9

1,750

0.5

Social Work

179

9,108

1.96

Speech Pathology

3

3,006

0.09

It is often difficult to attract non-Aboriginal people in specialist areas to work and live in rural and remote areas for extended periods, for example therapists, teachers and medical officers; the cultural shift from metropolitan and city life with family and community supports is too great. The development of an Aboriginal therapy assistant model being trialled in the mid west region of WA, may prove to be a useful strategy in the current context of low numbers of trained Aboriginal therapists.


3.4.4 Summary and implications

A number of Aboriginal people find it difficult to access government provided or funded services due to the continuing influence of past government policies, coping with multiple family issues in addition to disability, needing to deal with multiple agencies and with services that are not culturally responsive. Cultural responsiveness is particularly relevant to address in relation to employing Aboriginal staff, training disability-related allied health workers, providing family carer support and ensuring Aboriginal advocates are available.



4. FUTURE PROJECTIONS



4.1 Future issues

The four factors and associated issues will continue to influence the extent to which Aboriginal people with disabilities receive adequate informal support from family, friends and community and effective formal services. Increasing pressures over the next 15 to 20 years on the WA population may exacerbate these issues for Aboriginal people as an already vulnerable population. Examples include the pressures exerted by climate change and the need to adapt, increased pressures on public health, housing, education and other services as WA continues to grow and import workers from interstate and abroad.


Policy frameworks are in place at national, state and disability agency levels that provide a firm foundation to address Aboriginal disadvantage and disability, however, lack of sufficiently strong accountability measures requiring government and funded agencies to commit resources, implement policy frameworks and close gaps in ‘headline indicators’ is of concern. Australia is still in the very early stages of developing effective strategies, all of which are complex and need strong commitment over long periods. It is the author’s belief that quantum leaps are needed rather than ‘business-as-usual’ approaches across jurisdictions, state government agencies and the disability sector and in partnership with Aboriginal people. If this does not occur, the gaps will not close for disability and other indicators.

4.2 Suggested courses of action


Invest in building partnerships

Disability service providers must develop meaningful and lasting partnerships, first and foremost, with the Aboriginal community at national, regional and local levels. Then, in partnership with Aboriginal people, advance toward developing partnerships with other agencies such human and social services, businesses and non-government organisations. The continued employment of Aboriginal people in disability service organisations and the appointment of Aboriginal advisors to the Commission will greatly assist the relationship-building process.


Build on existing disability policy and practice

The Commission must build on current strategies. The Access for Aboriginal People Policy and Practice Plan and the newly-launched Reconciliation Action Plan focus on addressing the disability-related issues discussed in this paper. Implementing these Plans need to receive sharp focus and be continued and extended over the coming 15-20 years.


Take quantum leaps to achieve outcomes

The Commission needs to take, and encourage other government agencies to take quantum leaps to address issues over the long term. Joint research and pilot initiatives may be worth exploring to advance some areas. Examples include, but are in no way limited to, the following:



  • Work with Aboriginal people and academic institutions to build the allied health Aboriginal workforce, a strategy recommended by the Swinburne report. A similar long-term and comprehensive strategy has been implemented in WA to increase the number of Aboriginal medical officers and is now paying dividends. Allied health professions could learn from this approach.

  • Work with and learn from the approach of agencies such as the Wunan Foundation in Kununurra who employ evidence-based strategies to develop work readiness and employment skills for Aboriginal workers in Aboriginal communities (see Stopher and Murphy, 2007). Initiatives such as these can help develop disability-related support workers. This is another comprehensive and intensive strategy that will reap benefits in the longer term.

  • Continue to actively develop the innovative Aboriginal employment and support strategy recently commenced within the Commission.

  • Pursue creative opportunities that have emerged from land rights. WA is a resource rich state with increasing land right agreements developed with Aboriginal groups (COAG 2007 report). Mining company, or trusts, are seeking to undertake community developments which complement government services and require (and want) sound advice to do so. Although affecting only a proportion of Aboriginal people, these opportunities could be actively explored by the Commission on a regional level.



5. REFERENCES

Autralian Bureau of Statistics, Australian Social Trends (2008). From http://www.abs.gov.au/ausstats/abs

Autralian Bureau of Statistics, Australian Social Trends (2006). From http://www.abs.gov.au/ausstats/abs

Department of Indigenous Affairs (2008). From www.dia.wa.gov.au .

Disability Services Commission (2007) Annual Client Data Collection (not published).

Human Rights and Equal Opportunity Commission (2008). CloseTheGap: Indigenous Health Equality Summit Statement of Intent. From www.hreoc.gov.au/social_justice/health/index.html

Te Ahukaramu Charles Royal (2002). Indigenous Worldviews - a Comparative Study. Wellington.

Murphy R, Stopher K, and Thomson N (2004). Addressing the Unique Needs and Issues of Western Australian Aboriginal People with Disabilities. Disability Services Commission and Edith Cowan University, WA (unpublished report).

National Aboriginal and Torres Strait Islander Social Survey (NATSISS, 2002) From http://www.abs.gov.au/ausstats/abs

O’Kelly C, and Snashall-Woodhams J (2007). Building Culturally Secure Disability Services for Indigenous Australians. A national report prepared for the Disability Policy & Research Working Group (DPRWG) by Swinburne University of Technology (TAFE Division Indigenous Programs).

Stopher K, and Murphy R (2007). How to develop and implement a culturally secure ParentSupport service in Halls Creek and Kununurra: Consultation with communities and agencies. Report prepared for the Responsible Parenting Initiative, Department for Child Protection, WA.

Thied M, and Macintyre D. Exploring the Dimensions of Access (2007). In: Macintyre D, Mooney G, editors. The Economics of Health Equity. Cambridge: Cambridge University Press.

The Council of Australian Governments (2007). Addressing Indigenous Disadvantage: Key Indicators 2007. Steering Committee for the Review of Government Service Provision, Canberra.

Zubrick SR, Silburn SR, Lawrence D, Mitrou F, Dalby R, Blair E, Griffin JA, Milroy H, De Maio JA, Cox A and Li J. The Western Australian Aboriginal Child Health Survey: The Social and Emotional Wellbeing of Aboriginal Children and Young People. Perth: Curtin University of Technology and Telethon Institute for Child Health Research; 2005.



1 The term Aboriginal is used in preference to Indigenous as, during the WA statewide consultations (refer to Section 3), most Aboriginal people preferred to use either the term Aboriginal or the name of their specific language group to denote their cultural identity. In addition, the term is used for ease of reading, recognising that the term refers to both Aboriginal and Torres Strait Islanders who live in WA.

2 Ascertainment is the process by which a person, or cluster of people is brought to the attention of an investigator; this has a bearing on the interpretation of results.




3The 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.



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