As a nationwide scheme, the NDIS covers rural and remote areas, and vast distances. People with disability living in rural and remote areas often face additional challenges that are distinctly different from those faced by people who live in metropolitan areas. It is therefore imperative that the NDIS is responsive to, and appropriate for, people with disability and their families and carers living in rural and remote areas. Furthermore, there are many challenges involved in the delivery of disability services in rural and remote areas including small populations dispersed across vast geographic regions, limited infrastructure, and difficulty in attracting skilled personnel. The NDIS recognises the need to ensure that it supports service delivery in rural and remote areas, particularly those that include a higher proportion of Aboriginal and Torres Strait Islander peoples.
In this section we present key findings arising from the evaluation of the NDIS in the Barkly region of the NT. As an extension of the broader NDIS evaluation, this study sought to explore specific issues regarding the operation of the NDIS in a remote location. In-depth qualitative interviews were conducted across two waves with NDIS participants and their families and carers, non-NDIS participants, disability service sector representatives, and NDIA managers and staff.
The NDIS evaluation in the Barkly region covered many of the key questions considered by the broader evaluation. In this chapter we provide a synthesis of the evaluation evidence around seven main themes relating to the NDIS trial in the remote Barkly region. These themes include the supply and demand of disability support services; the disability sector and its workforce; choice and control (including self-management); reasonable and necessary supports; participation, wellbeing and aspirations; fairness, equity and access; and the interface between the NDIS and mainstream sectors.
We start the chapter by detailing contextual information about disability in Aboriginal and Torres Strait Islander Communities, and more specifically within the Barkly region of Australia. There were many challenges of undertaking the evaluation of the NDIS in the Barkly region of the NT. These are briefly described in Appendix A1.2.
Cultural Context of Disability in Aboriginal and Torres Strait Islander Communities -
In local Indigenous contexts, disability is an increasingly common phenomenon that communities are still struggling to understand and incorporate into cultural explanations of health and wellbeing. Traditionally people would have experienced disability as a result of injury or congenital influences, but increased risk factors today have seen disability impact Indigenous Australians at disproportionate rates to other Australians.
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Discussions about disability are not easy, as Indigenous definitions of health place less emphasis on physical concerns and more on a holistic sense of wellbeing. This tends to mean disabilities can be minimised for individuals who are otherwise well-connected and embedded with family, culture and country. Where these core cultural values are intact, the individual with a disability is well integrated and supported. Unfortunately, where families have been dislocated or impacted by dysfunction, it is much more likely that some people with disabilities can be left vulnerable and unsupported.
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Local Aboriginal people may sometimes use physical or psychological impairments to describe an individual without the sensitivity and stigma experienced in the non-Indigenous population. When referring to a specific individual, people may say things like ‘blind one, crippled one’ or even ‘mad one’ for a range of disabilities. This is not intended to be insensitive (although can be experienced as such), but rather as a feature of a visual and descriptive way of experiencing the world. It is also usually followed with an expression of empathy and compassion, such as ‘kunye’ meaning ‘poor thing’.
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There is often a reluctance to discuss disabilities as some Indigenous people may feel or believe that speaking about such issues aloud can aggravate matters for individuals. This is more likely among remote populations and less so among town-based populations.
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The health and support needs of NDIS participants and their carers in the Barkly region were substantial. Mobility, housing, home modifications, and transport supports were the major requirements of many of the people with disability interviewed. Some participants with a physical disability required support with activities of daily living - feeding, showering, dressing and mobilising. Participants with psychosocial and intellectual disability needed advocacy, social and emotional support. Access to early intervention, including therapy services, specialised equipment and respite support was required by children with disabilities.
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A high prevalence of chronic health conditions which predisposes people to disability, through amputations or other impairments was evident in the Barkly. Family members provide much of the care and for Aboriginal people, the responsibility is determined by roles under kinship systems. However, many carers had their own existing or looming health and support needs, adding to the impact of disability on the community.
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Tennant Creek – the largest town within the Barkly region - has poor access and infrastructure (including pavements and building access, including to basic services such as the post office and some banks) which negatively impacts on the people with disability living in the area. Existing accommodation in Tennant Creek was rarely modified to meet the needs of people with disability. Most respondents other than those in purpose-built housing were struggling with a lack of adequate ramps, rails and bathroom infrastructure. This situation was exacerbated in the remote communities surrounding Tennant Creek.
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A lack of appropriate residential and respite care within the Barkly region meant that sometimes young people were placed in aged care facilities or transferred unnecessarily to hospital settings for respite. Suitable facilities for dealing with people with acquired brain injury or other mental health issues were also lacking, which impacted on individuals, their families and the organisations providing supports to these people. At different times, it was reported that certain individuals who could not be managed locally, were sent to Alice Springs. The NDIS was seen as pivotal in advocating on behalf of people with disability and coordinating better support options.
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