NDIA Accountability Project

Addressing amputation disparities for Aboriginal communities in South Australia

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Inquiry into the NDIS participant experience in rural, regional, and remote

Australia

February 2024

Use of the term ‘Aboriginal’ The submission uses the term ‘Aboriginal’ to describe the people and communities in recognition of the traditional owners of the lands now called South Australia. The authors of the report acknowledge the diversity of the people, families, and communities, who live in South Australia, which includes people from various Aboriginal and / or Torres Strait Islander backgrounds. The impacts of colonisation and past policies, still felt by many Aboriginal and Torres Strait Islander people today, have resulted in some complexities associated with traditional ownership, country and a sense of home and belonging. The authors would like to iterate that this submission is for the benefit of all, and the choice of terminology intends to respectfully acknowledge custodianship in accordance with Aboriginal traditions and customs. The term Torres Strait Islander is specifically used where reference is made to Aboriginal and/or Torres Strait Islander people at a national level or where it is used in position titles and titles of publications and programs.

Recommendations

  1. Increase culturally responsive education and support for Aboriginal community members and their families entering and navigating the NDIS system.

  2. Increase capacity building of NDIS participants and their families to be aware of their care needs and where NDIS can support the provision of these services.

  3. Improve communication between NDIS, participants, health services, and disability service providers to ensure efficiency in the system and prevent delays and wait times for services, particularly home modification.

  4. Ensure social, emotional, and cultural wellbeing support is made available to NDIS participants and their families, including the utilisation of digital solutions.

  5. Involve local Aboriginal leadership and community members in all stages and decisions associated with planning, delivering, and evaluating the implementation of programs that address NDIS support for amputees, acknowledging Aboriginal Community Controlled Organisations as preferred providers of such programs for Aboriginal communities.

  6. Invest in engagement, training, mentorship and retention of the Aboriginal NDIS provider workforce, and recognise the importance of the Aboriginal NDIS workforce in providing culturally safe and responsive care.

  7. Adequately promote and fund localised and continuous cultural responsiveness and awareness training to strengthen the cultural responsiveness of NDIS providers and support efforts to eliminate racism from the NDIS system.

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Walk Strong, Walk Tall – SA Aboriginal diabetes-related foot complications program.

The Walk Strong, Walk Tall program delivers activities that seek to address the profound inequalities in diabetes-related foot complications, including amputation, experienced by Aboriginal people, families and communities in South Australia. The program aims to influence the South Australian health system to provide culturally responsive, evidence based, and integrated foot health care via advocacy to improve health and social policy and planning across South Australian government and community-controlled sectors.

Our program understands the importance of cultural considerations and the cultural determinants of health being built into existing community, primary, and tertiary care services, and support to provide safe, holistic, and high-quality care for those experiencing limb amputation.

Walk Strong, Walk Tall works with a range of service providers including Aboriginal Community Controlled Health Services, non-government organisations, and government led community and hospital-based teams.

Background

Diabetes is the leading cause of amputation in Australia, with Aboriginal and Torres Strait Islander Australians reported as high as 38 times more likely to experience lower limb amputation than their non-Aboriginal and Torres Strait Islander counterparts1. This increased prevalence of amputation is reflected in South Australian data. While accounting for 1.5% of the South Australian population, Aboriginal people accounted for 4.9% of those who had an amputation2. Data indicates that Aboriginal people residing in regional, rural, and remote South Australian communities are at much greater risk of amputation, with Aboriginal people from one regional jurisdiction accounting for one third of all amputations from that area2. These statistics are unacceptable.

NDIS data reports that people living with amputation account for just 1% of NDIS participants3. There is no publicly available data to determine the proportion of this 1% of participants who identify as Aboriginal or Torres Strait Islander peoples, limiting ability to understand if this cohort is accessing the disability services that would support them to participate fully in community. Anecdotally, clinician feedback indicates that the burden of amputation amongst the Aboriginal community is not reflected by corresponding NDIS participation rates.

In a recent South Australian report, Enhancing Amputation Care for Aboriginal People in South Australia 2, Aboriginal people living with amputation described their interactions with the acute health care system and early interaction with the NDIS system. Clinicians working in the amputee rehabilitation field also contributed to this report. Whilst the report does not focus solely on their experience of NDIS, it does capture experiences and learnings which, along with current advice obtained directly from participants and clinicians, inform the recommendations and background contained in this submission.

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Recommendation 1: Increase culturally responsive education and support for Aboriginal community members and their families entering, navigating, and advocating within the NDIS system.

Recommendation 2: Increase capacity building of NDIS participants and their families to be aware of their care needs and where NDIS can support the provision of these services.

It is critical that community members understand their options regarding NDIS and are involved in decision-making at each stage of the planning process. Unfortunately, some community members report confusion and limited understanding navigating NDIS funding and the planning process post amputation. Community members have described the support from others who had lived experience to increase their knowledge and understanding as invaluable. Currently there is a disconnect between the health system, care co-ordination, cultural support and access to a trusted person who can assist along the care continuum. This is exacerbated when community members are off-Country. Volunteer Amputee Peer Support Programs are available 4, but unfortunately are not Aboriginal and Torres Strait Islander-specific at this time. Funding to support the development of a paid Peer Support Program that can be accessed and billed to NDIS from the time of amputation and through the rehabilitation journey would promote capacity building for Aboriginal community members and their families to interact and participate with the NDIS, advocate for appropriate service provision, and improve individual outcomes.

Recommendation 3: Improve communication between NDIS, participants, and service providers to ensure efficiency in the system and prevent delays and wait times for services, particularly home modification.

Recommendation 4: Ensure social, emotional, and cultural wellbeing support is made available to NDIS participants and their families, including the utilisation of digital solutions.

Aboriginal and Torres Strait Islander people have a cultural and spiritual connection to their land. In South Australia, post-amputation care requires rural and remote disabled community members to travel to Adelaide or Whyalla to access services, leaving them isolated from family, local supports, and culture, often for lengthy periods. There are numerous challenges in achieving successful discharge home and equitable access to services and assistive technology, especially for those who live in rural and remote locations. This is due to inadequate access to equipment, home modifications and ongoing need for therapy services and specialist medical outreach services.

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The NDIS is difficult to navigate for community members, carers, and clinicians, with poor communication and understanding between these parties and the NDIS often contributing to extended time away from family and Country1*. This is exacerbated for those residing in rural and remote areas. Aboriginal people living with amputation have reported deterioration of their mental health due to the extended time away from family, local supports, culture, and Country. Amputation is a significant traumatic life event. During an amputation process there are multiple stressors that impact community members and families, yet access to trauma informed psychological support is limited in many areas, and only compounded by geographical distance. Increasing access to social and emotional wellbeing support, through expansion of initiatives such as the Aboriginal Disability Liaison Officer Program, will support those undergoing amputation to navigate through the complex system of NDIS during what is a challenging and traumatic time.

Recommendation 5: Involve local Aboriginal leadership in all stages and decisions associated with planning, delivering, and evaluating the implementation of programs that address NDIS support for amputees, acknowledging that Aboriginal Community Controlled Organisations as preferred providers of such programs for Aboriginal and Torres Strait Islander communities.

Recommendation 6: Invest in engagement, training, mentorship, and retention of the Aboriginal NDIS provider workforce, and recognise the importance of the Aboriginal NDIS workforce in providing culturally responsive care.

Recommendation 7: Adequately promote and fund localised and continuous cultural safety and awareness training to strengthen the cultural responsiveness of NDIS providers and support efforts to eliminate racism from the NDIS system

Any approach to improve the experience of the Aboriginal amputee community within the NDIS must recognise and promote the rights of Aboriginal and Torres Strait Islander peoples as established under international agreements such as the United Nations Declaration on the Rights of Indigenous Peoples5. This involves applying the principles of Aboriginal and Torres Strait Islander leadership in designing and implementing programs and services and actively addressing racism. Since inception, the Walk Strong, Walk Tall program has been informed and led by Aboriginal and Torres Strait Islander clinicians, researchers, community members, and organisations, including Aboriginal Community Controlled Health Services. This approach has ensured that the program is culturally responsive and appropriate, has Aboriginal people’s strengths, perspectives, needs and challenges at its centre, and adheres to the principle of shared decision-making. Aboriginal leadership needs to be involved in all stages and decisions associated with NDIS planning and implementation initiatives for the following reasons:

1*Country is the term often used by Aboriginal and Torres Strait Islander peoples to describe the lands, waterways, and seas to which they are connected. The term contains complex ideas about law, place, custom, language, spiritual belief, cultural practice, material sustenance, family, and identity (Definition taken from AIATSIS: Welcome to Country: https://aiatsis.gov.au/explore/welcome-country)

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  1. It ensures that core values such as self-determination and Aboriginal community governance are fully embedded.

  2. It aligns with the principles of engaging with Aboriginal and Torres Strait Islander communities, that of self-determination, leadership, impact and value and sustainability and accountability 6.

  3. It works towards promoting a NDIS that is culturally responsive and effective in improving outcomes for Aboriginal and Torres Strait Islander people.

  4. Building effective collaborations and partnerships between Aboriginal people and other organisations and service providers, assist in creating and delivering NDIS services that are culturally respectful.

  5. It assists in identifying priorities or gaps in the system that require improvement which could assist in increasing participation rates of Aboriginal communities in the NDIS.

  6. It will ensure that the needs of Aboriginal communities regarding NDIS programs, services, initiatives, and research are being met.

Service provision led by the Aboriginal Community Controlled Health Services sector, informed through governance, community engagement and local knowledge of “what works” and is culturally acceptable, together with a partnership approach involving Aboriginal leadership has proven to be effective in addressing the drivers of disparity, and to achieve greater health gains compared to programs delivered through mainstream services. This model could be upscaled within the disability and NDIS sector to improve uptake and participation of Aboriginal people. As already highlighted in the background of this document, there are significant amputation disparities between Aboriginal and Torres Strait Islander people and the rest of the community. Entering and navigating the NDIS is often challenging for people with disability. This is particularly true for Aboriginal people for whom English may not be a first language and who might not be comfortable or know how to seek access to NDIS support via the Access Request Forms process and subsequent medical and disability evidence. Work to increase the Aboriginal disability workforce is essential, as these staff provide a critical role to support community members to transition into NDIS services and assist service providers in understanding how to meet cultural needs. Community members have described that often this workforce is absent when interacting with the NDIS and service providers, however when present, makes a significant impact.

There is currently insufficient workforce capacity (i.e. a shortage of workforce) and capability (i.e. inadequately trained or supported workforce) across the NDIS system to effectively care for and provide services to Aboriginal people living with amputation. These shortages are compounded with increasing remoteness, where the provision of services largely occur through community members traveling to major regional centres or Adelaide for extended periods of time. Additionally, this travel often comes at significant un compensable financial cost to these community members and their families. If service provision can be provided locally often significant delays are experienced waiting for service delivery e.g. home modifications to allow safe discharge and vital assistive technology to promote independent living. A critical workforce shortage is being experienced across Australia, though most prominently in remote and very remote areas. Sustainable strategies and action that include incentives to attract and retain disability

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service providers are urgently required to mitigate the considerable and increasing burden that amputation is placing on Aboriginal people, families, and communities.

Whilst waiting for the Aboriginal workforce to grow, the capacity and skills of the non Aboriginal workforce to provide effective and culturally responsive care to Aboriginal people must be strengthened. For this to occur, cultural awareness and safety training needs to be of high quality, continuous and fit to strengthen institutional and individual capacity in the development of skills in self-reflexivity, cultural responsiveness, and anti racism.

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References

  1. Norman PE, Schoen DE, Gurr JM, Kolybaba ML. High rates of amputation among Indigenous people in Western Australia. Med J Aust. 2010;192(7):421.

  2. Colmer, K., Agius, J., Wilson, S., Davey, S., Fitridge, R., Morey, K. (2022), Enhancing Amputation

Care for Aboriginal People in South Australia. South Australian Health and Medical Research

Institute, Adelaide.

  1. National Disability Insurance Agency (2023), Participant datasets, National Disability Insurance Agency. Accessed online on 28 Feb 2024 at: Participant datasets | NDIS

  2. Limbs 4 Life (2023), Peer Support, Limbs 4 Life. Accessed online on 28 Feb 2024 at: Peer Support - Limbs 4 life

  3. United Nations. United Nations Declaration on the Rights of Aboriginal Peoples (2007); Available from: http://www.un.org/esa/socdev/unpfii/en/drip.html

  4. Australian Health Practitioner Regulation Agency (AHPRA). The National Scheme’s Aboriginal and

Torres Strait Islander Health and Cultural Safety Strategy 2020-2025. In: Aboriginal and Torres Strait

Islander Health Strategy 2020. https://www.ahpra.gov.au/About-AHPRA/Aboriginal-and-Torres Strait-Islander-Health-Strategy.aspx.

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