Aboriginal people with disabiliy: unique approaches to unique issues
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.
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:
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).
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:
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:
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.
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.
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:
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)
(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:
(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)
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:
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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