The findings of the Disability Royal Commission: the relevance for people with intellectual disabilities in rural areas

Abstract

People living in rural areas of Australia are significantly disadvantaged, compared to metropolitan dwelling peers, in accessing basic support services. Australians with intellectual disabilities living in rural areas are at specific risk of further disadvantage. This article examines the findings and recommendations of the Disability Royal Commission through the lens of rurality. A frequency analysis of key words relating to rurality indicated an interesting trend in relation to the term “remote” which had a higher count rate than either “regional” or “rural”. This finding may indicate that issues from non-remote rural locations were less well represented. The Final Report included many examples from people with intellectual disabilities or their carers regarding the lack of vital services in rural areas, and specifically highlighted the need to introduce a “provider of last resort”. Problems with support were also identified following domestic violence and rape, and concerns noted regarding the provision of public transport in rural areas. The Final Report contains 222 recommendations, of which 11 contained a specific focus addressing a rural issue, and these are briefly discussed. It is unfortunate that, in some key support areas, there appear to be an implicit expectation that the remaining 200+ recommendations will all apply evenly across Australia, irrespective of location. Nonetheless, the Disability Royal Commission should be commended for their inclusive approach to involving people with disabilities living in rural areas which led to the reporting from rural people with intellectual disabilities and their carers regarding the issues that they have faced.

Keywords:

• Intellectual disabilities
• Disability Royal Commission
• rural
• regional
• remote

A colleague with lived experience of intellectual disability commented to me that they could not find any references to rural people in the Final Report by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (the Commission) (Commonwealth of Australia [CoA], 2023. Sept. 29). They were quite distressed by the fact that they felt their voice, and that of their fellow rural residents, had not been considered. I initially found this perplexing, as I knew from my own readings that the Commission’s Final Report did contain numerous references to rurality. However, my colleague was correct; while the main reports did refer to rural issues, the 13 volumes of the “easy-read” versions did not once mention the words “rural”, “regional”, or “remote” (CoA, 2023, Sept. 29, Easy Read version). Once I had established the discrepancy between the easy read and full report, I was able to re-assure my colleague that rural people had been involved in the Commission’s processes, and that their voices had been included, but that this perhaps had not been made clear in the easy-read versions. To further evaluate my colleague’s observation about rural people being potentially overlooked, the goal of this article is to review the findings and recommendations of the Commission and the inclusion of rural Australian perspectives and experiences in its Final Report.

Definition of rurality

While there are many different definitions of rurality, one of the commonly used ones in Australia is the Modified Monash Model [MMM] (Department of Health and Aged Care, 2023). Using remoteness, as described by the Australian Statistical Geography Standard – Remoteness Areas [ASGS-RA] (Department of Health and Aged Care, 2021) and population figures, the MMM specifies a location as being one of seven categories, ranging from major cities as ‘MM 1′ through to very remote areas being ‘MM 7′. Commonly used terms, including “rural”, “regional”, “remote” and “geographic disadvantage”, were not specifically defined within the Commission’s glossary (CoA, 2023, Sept. 29). Therefore, for this discussion, “rurality” is considered to refer to all areas outside of the major cities, and this definition encompasses the categories of MM2 to MM7.

Why rurality is important to consider in disability support

It is widely reported that Australia is one of the most urbanised countries in the world, with estimates that just 10% of people are living outside of a “city” area (e.g., Australian Government Centre for Population, 2023). However, these figures can be misleading, as they include regional centres located considerable distances from a major metropolitan area (Australian Bureau of Statistics, 2019). To provide an alternative perspective of rurality, the MMM percentage of Australians living in regional, rural or remote areas is 30%, or approximately 7 million people (Department of Health and Aged Care, 2023). Mount Isa in Queensland is an example of an Australian city that is situated outside of an urban area. It has a population of around 18,000 people (Australian Bureau of Statistics, 2023a) but is located around 1850kms from the state capital of Brisbane and is defined as a remote community [MM6] using the MMM. This definition of “city” for Mount Isa in the context of service delivery is problematic, and it is hard to argue that the residents have the same access to support models as someone living in Brisbane.

It has been identified that people living in rural areas of Australia are significantly disadvantaged, when compared to their major metropolitan-dwelling peers, in terms of socio-economic factors, access to services, and overall health outcomes (Australian Institute of Health & Welfare, 2023). The reasons for these differences are multi-factorial (Bourke et al., 2013), but include limited access to both state and Commonwealth government infrastructure, including community housing, public transport, and education (Cheers, 2019)—all key aspects of service delivery considered by the Commission.

People with intellectual disabilities living in rural areas are a cohort of the Australian community at specific risk of disadvantage. Rural people in general are likely to experience issues with service access. However, this problem is magnified for people with intellectual disabilities who often present with complex healthcare issues and high support needs (Hussain et al., 2019; Wark et al., 2013). Further adding to this disparity is the fact that some rural areas of Australia have a greater proportion of people with disabilities than in metropolitan locations in the same state (Australian Bureau of Statistics, 2003, 2009, 2012, 2016). As noted in these Australian Bureau of Statistics reports over many years, these higher rates of disabilities in rural areas place even further pressure on the already limited support services. As an example, the Australian Government report on allied health services in rural Australia recognised both the lack of access to timely and appropriate services for rural people in general, but also specifically highlighted the need to better support people with disabilities (Australian Government, 2020). It is also worth noting that Article 25 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations General Assembly, 2006), to which Australia is a signatory (Australian Human Rights Commission, 2007), states the need for governments to ensure access for people with disabilities to appropriate care, and that support services should be provided as close as possible to the person’s home, even in rural locations.

The introduction of the National Disability Insurance Scheme (NDIS) in Australia was seen as an opportunity to improve access to necessary and desirable services for people with disabilities in all areas. However, the research evidence so far does not indicate this is occurring for rural Australians with disabilities (e.g., Dintino et al., 2019; Garnham et al., 2019; Quilliam & Bourke, 2020; Veli-Gold et al., 2023), and that the existing inequalities between rural and metropolitan dwelling people with disabilities have not improved. The current situation in Australia is that people with intellectual disabilities, if they live in a rural area, face significant barriers to simply access basic services, and are significantly disadvantaged when compared to metropolitan peers. As such, it is important to consider the relevance of the findings and recommendations of the Commission specifically for rural people with intellectual disabilities.

How did the Commission consider rurality?

The Commission held 32 public hearings and two ceremonial sittings with 837 witnesses, including 209 reports from people with disabilities, over 154 separate days. Hearings were held in every state and territory of Australia, including regional and remote locations such as Townsville [MM2] and Alice Springs [MM6] (CoA, 2019–2023 [Our public hearings, transcripts]). Many of the public hearings were held online, which facilitated the ability of some people living in rural area to directly contribute their experiences regarding violence, neglect, abuse and exploitation. It is acknowledged that not all rural areas have reliable Internet access, and that a proportion of rural people with intellectual disabilities may not have had the capacity or support to use online technologies. Consequently, these voices would not have been included. However, there were numerous examples, such as in Book 1. Volume 1, of the Final Report, Voices of People with Disability, of testimony provided by rural people with intellectual disabilities or their carers (CoA, 2023, Sept. 29, Vol. 1, Book 1). In an attempt to quantify how the Commission considered rurality, a frequency analysis was performed both on the entire Report as well as specifically within the Recommendations section.

How often did the Commission’s report specifically comment on rurality?

A frequency analysis was performed to establish how often the of key terms “regional”, “rural” or “remote” appeared throughout the Executive Summary and the 12 volumes of the Final Report (CoA, 2023, Sept. 29). The phrase “geographic disadvantage” was also searched for, but it only appeared a single time in both Volumes 5 and 6, as part of a reference to the Victorian Mental Health and Wellbeing Act 2022, and twice in the overall recommendations within the Executive Summary. Therefore, this phrase was not included the overall summary of mentions below in Table 1.

Table 1. Overall mentions* of “regional”, “rural” and “remote” in the final report.

Volume	Regional	Rural	Remote
Executive Summary: Our vision for an Inclusive Australia and Recommendations	10	3	58
1: Voices of People with Disability (Books 1 to 3)	127 (46 + 47 + 34)	35 (12 + 8 + 15)	39 (11 + 22 + 6)
2: About the Royal Commission	10	4	50
3: Nature and extent of violence, abuse, neglect and exploitation	16	4	17
4: Realising the human rights of people with disability	11	5	8
5: Governing for inclusion	2	0	6
6: Enabling autonomy and access	14	16	41
7: Inclusive education, employment and housing (Summary + Parts A, B & C)	26 (1 + 19 + 5 + 1)	5 (0 + 1 + 3 + 1)	9 (0 + 5 + 3 + 1)
8: Criminal justice and people with disability	11	3	12
9: First Nations people with disability	12	5	182
10: Disability services	23	11	87
11: Independent oversight and complaint mechanisms	1	0	0
12: Beyond the Royal Commission	1	1	4
Totals	264	92	513

*There is some overlap in the reporting of these numbers, particularly in relation to issues mentioned in both the Executive Summary and then in a distinct volume, and also when the combined phase “regional and remote” was used.

The Commission’s Final Report made 222 recommendations covering a range of contexts, including rurality, in which violence, abuse, neglect and exploitation of people with intellectual disabilities occur (CoA, 2023, Sept. 29, Executive Summary, Our vision for an inclusive Australia and Recommendations). The 222 recommendations are designed to address policy and practice issues across Australia, and their focus is on implementation by governments, institutions, community and disability support organisations, and the wider community. In order to establish how often rurality was specifically included in the recommendations, a frequency analysis was performed specifically on the Recommendations section to establish how often and where the words “regional”, “rural”, “remote” and “geographic disadvantage” appeared. The results of this search are presented in Table 2.

Table 2. Mentions* of “regional”, “rural”, “remote” and “geographic disadvantage” in the Disability Royal Commission’s recommendations.

Term/phrase	Recommendation	Specific reference
Rural	Recommendation 6.29 Improve specialist training and continuing professional development in cognitive disability health care (pg. 229)	Generic reference noting “… the Australian College of Rural and Remote Medicine” as part of a wider list of medical practitioners
Regional	Recommendation 7.8 Workforce capabilities, expertise and development (pg. 224)	Generic reference noting “…regional catchment” in relation to schools
	Recommendation 8.21 Diversion of people with cognitive disability from criminal proceedings (pgs. 277–278)	“The New South Wales, South Australian, Victorian and Western Australian governments should review and fund their existing court-based diversion programs for people with cognitive disability charged with offences that can be heard in local or magistrates’ courts to ensure the programs … are accessible and culturally appropriate, particularly in regional and remote areas” AND “The Australian Capital Territory, Northern Territory, Queensland and Tasmanian governments should develop and fund court-based diversion programs for people with disability charged with summary offences in local or magistrates’ courts which … are accessible and culturally appropriate, particularly in regional and remote areas”
	Recommendation 10.24 Improved access to behaviour support practitioners (pg. 297)	The NDIS Quality and Safeguards Commission should, by December 2024, improve access to behaviour support practitioners by: providing incentives for practitioners and National Disability Insurance Scheme providers to provide behaviour support services, including in regional and remote areas in which “thin markets” operate forming a partnership with First Nations leaders from the disability and employment services sectors to develop a recruitment strategy targeting First Nations people and others with experience in working with First Nations communities to address behaviour support shortages in regional and remote areas
	Recommendation 10.29 Establishing a First Nations Unit (pg. 299)	The NDIS Quality and Safeguards Commission should establish a dedicated First Nations Unit to develop its engagement with and understanding of the issues facing First Nations participants in the National Disability Insurance Scheme, particularly in regional and remote communities.
Remote	Recommendation 6.2 Increase the number of Auslan interpreters (pg. 214)	The Australian Government and state and territory governments, through the Disability Reform Ministerial Council, should commission the development of a workforce strategy to increase the number and quality of Auslan interpreters. The strategy should be based on a robust demand-supply analysis to quantify the current gaps and shortages in interpreting services. This includes analysis of qualifications, specialisations, geographic coverage, and the availability and use of face-to-face interpreting and Video Remote Interpreting
	Recommendation 9.4 Expand community connector programs (pg. 281)	The National Disability Insurance Agency should increase the number and coverage of the community connector programs for First Nations people with disability in remote areas.
	Recommendation 9.9 Criteria for funding family supports (pg. 282)	The National Disability Insurance Agency (NDIA), the First Nations Advisory Council and First Nations Community Controlled Organisations should co-design policy guidelines on funding for First Nations family members to provide supports to participants in remote communities. Any policy guidelines should consider: the risk of financial exploitation, the need for a regulatory framework and oversight, and whether a similar approach would apply to non-First Nations carers in remote communities in similar situations
	Recommendation 9.13 Remote workforce development (pg. 284)	The First Nations Disability Forum and parties to the Disability Sector Strengthening Plan (DSSP) should collaborate to develop a strategy to develop First Nations local workforces in remote communities.
	Recommendation 10.4 Quality of support coordination (pgs. 286–287)	The NDIS Quality and Safeguards Commission should examine the quality and consistency of support coordination, with a particular focus on National Disability Insurance Scheme participants who live in remote and very remote locations
	Recommendation 10.10 Provider of last resort (pg. 290)	The Australian Government should urgently engage with state and territory governments about funding and arrangements for a provider of last resort scheme. It should also consult with people with disability, disabled people’s organisations, disability representative organisations including member-led First Nations Community Controlled Organisations, and peak bodies about how such a scheme could operate. The scheme should be designed to address failed or thin markets, particularly for First Nations people with disability in remote or very remote areas
	Recommendation 10.21 Registration and audit process (pg. 296)	Generic reference noting “remote auditing”.
Geographic Disadvantage	Recommendation 4.7 The right to live free from exploitation, violence and abuse (pg. 195)	The Disability Rights Act should recognise people with disability have the right to live free from all forms of exploitation, violence and abuse … people with disability who are victims of any form of exploitation, violence or abuse have the right to … access protection services that are sensitive and responsive to the different needs and experiences of people with disability, due to one or more attributes such as sex; gender identity; sexual orientation; ethnicity; language; race; religion, faith or spirituality; socio-economic status; age; neurodiversity; culture; residency status; geographic disadvantage; and experiences of trauma
	Recommendation 4.9 The right to equitable access to health services (pg. 196)	The Disability Rights Act should recognise the right of people with disability to equitable access to health services. This right should include … the right to access health services that are safe, sensitive and responsive to the intersectional needs and experiences of the person with disability, noting that intersectional needs and experiences may be due to a variety of attributes, including sex; gender identity; sexual orientation; ethnicity; language; race; religion, faith or spirituality; socio-economic status; age; neurodiversity; culture; residency status; geographic disadvantage; and experiences of trauma

*When there are combinations of these words, such as “regional and remote”, the reference is only included in the first instance.

Reflections on the Commission’s consideration of rurality

Overview

Volume 1, Voices of People with Disability, features a high number of mentions of rurality, somewhat assuaging the more general concern of my colleague regarding the overall voice of rural people being missing from the report. However, it is worth recognising that just 14 (6%) of the 222 recommendations specifically mentioned one of the nominated key terms, and only 11 of these actually pertained to rurality. I acknowledge that many recommendations may be of general relevance to people with intellectual disabilities, irrespective of whether they live in a rural or metropolitan location. Therefore, the following reflection on the entire Report focuses on those recommendations that are viewed as responding directly to specific disadvantage associated with living in a rural location, or where rurality appears to have not been considered sufficiently by the Commission. Similar themes and concepts have been grouped together under sub-headings to facilitate ease of reading and therefore do not follow the numerical sequencing of the Commission’s recommendations.

Access to services

As described earlier, it has been identified that people with intellectual disabilities in rural areas are likely to experience inequitable access to support options generally and health services in particular. This well-established lack of services means that numerous reports to the Commission on these issues by rural people is hardly surprising. Volume 4: Realising the Rights of People with Disability, further reported that reduced access to any existing health services is exacerbated by the lack of public transport in rural areas and also noted concerns regarding potential discrimination in accessing rural public transport. Recommendation 4.9, The right to equitable access to health services, states that people with disabilities should have equitable access to health services (CoA, 2023, Sept. 29, Rec. 4.9). However, the Commission’s recommendation does not specifically define what proactive changes in rural areas should be implemented; their reference to rurality in this recommendation is merely a generic listing of “geographic disadvantage” among a range of other potential attributes. It is unfortunate and a missed opportunity that this recommendation did not specifically describe the need for change in relation to better health care access and support for people with disabilities in MM2 to MM7 areas.

Another service-access issue that has not perhaps received enough previous focus is that rural people with disabilities who are victims of domestic violence and rape noted problems with both initially reporting this abuse and then subsequently accessing appropriate and ongoing support. Recommendation 8.21, Diversion of people with cognitive disability from criminal proceedings, recommended that all governments across Australia should review how they support people with intellectual disabilities in the court system, and then made reference to ensuring that these supports are both accessible and culturally appropriate, particularly in regional and remote areas (CoA, 2023, Sept. 29, Rec. 8.21). I view this as an important recommendation, as it is well known that people with intellectual disabilities are over-represented in the criminal justice system (Haysom et al., 2014) and that accessible support may assist to both support victims and also reduce incarceration rates (Hepner et al., 2015). Specifically, the inclusion of the phase “regional and remote areas” in the recommendation is important to ensure that rural people with intellectual disabilities are not disadvantaged compared to their metropolitan peers with respect to accessible appropriately funded support programs.

Provider of last resort

The described lack of services in rural areas means that Recommendation 10.10, Provider of last resort, is perhaps one of the most important of all the recommendations relating to rural people with intellectual disabilities. It focusses on the key issue of who should provide support in locations where there are no other services available (CoA, 2023, Sept. 29, Rec. 10.10). The Commission identified that there are many rural areas in which service delivery is either minimal or totally non-existent, and that there is currently no agreement on who should fill this gap. The recommendation that the Commonwealth, state, and territory governments should urgently implement a “provider of last resort scheme” is one that I believe should be strongly supported, and reflects the anecdotal feedback provided to me by many rural families regarding a complete lack of services.

At the current time, the Commission notes that the lack of options means that many people with intellectual disabilities in rural areas are not able to access basic services, in spite of meeting all eligibility requirements and having a NDIS package for receiving support. There is a desperate need for government to fill this gap, as described a number of times through the Commission’s Final Report (CoA, 2023, Sept. 29, Vol. 1, Books 1 & 3). The loss of government services and the “thin markets” of alternative providers in rural areas has left many people and their families with no ability to access appropriate support services in spite of having funding to do so. For example,

Marjorie discovered her town lacks services and support for people with disability. She can’t access many of the services for which she has NDIS funding. “In town if you’re disabled, whether it’s mentally or physically disabled, you’ve lost. You have literally lost because there are just no services. [Marjorie] (CoA, 2023, Sept. 29, Vol. 1, Book 1, p. 540)

Lots of funding [for] behavioural support, speech therapy, occupational therapy, but when there’s no speech therapist, there’s no occupational therapist, there’s no behavioural specialist down there, what’s the point? [Callum] (CoA, 2023, Sept. 29, Vol. 1, Book 3, Callum and Anna, p. 624)

Workforce development

The Commission did recommend improving supports for rural people through development of the local workforce. For example, specialist behaviour support was identified as one of the key service access issues requiring urgent remediation. Recommendation 10.24, Improved access to behaviour support practitioners, proposed two measures: firstly, through providing incentives to encourage more behaviour support practitioners in regional and remote areas; and secondly, by working with First Nations disability and employment services providers to increase the number of behaviour support practitioners in regional and remote areas who can appropriately support First Nations people (CoA, 2023, Sept. 29, Rec. 10.24). This recommendation is very targeted in its outcomes for rural residents and also deliberately specified both an organisation responsible [the NDIS Quality and Safeguards Commission] and a timeframe [December, 2024], by which time improvements should occur.

Another suggested workforce improvement, albeit focused solely on First Nations people, is seen in Recommendation 9.13, Remote workforce development, which outlines the development of First Nations’ local workforces in remote communities (CoA0, 2023, Sept. 29, Rec. 9.13). While this is of high significance for remote First Nations people, it is not considered likely to resolve the workforce issues systemic within the wider rural community. While the recommendation regarding remote First Nations workforce development is to be commended and supported, it is again a shame that the Commission did not extend this to cover all rural locations.

Issues for First Nations people

The focus of this discussion is on rurality, and not First Nations people generally; however, it is acknowledged that there is a large number of First Nations people who live in rural areas. Volume 9, First Nations people with disability, provides many examples of rural disadvantage, particularly in remote areas of Australia, which are known to be under-resourced and under-serviced. While the focus of Volume 9 was on First Nations people, many of the findings may apply equally to anyone residing in remote locations (CoA, 2023, Sept. 29, Vol.9). Recommendation 10.29, Establishing a First Nations Unit, proposes that the NDIS Quality and Safeguards Commission should establish a dedicated First Nations Unit, and this would appear to be an important step to better support rural First Nations people. A specific reference to regional and remote communities is important to ensure that there is sufficient inclusion and recognition of the issues facing First Nations people who do not reside in metropolitan locations. It is vital to account for geographic variability to ensure culturally appropriate access to care is provided. Recommendation 9.4, Expand community connector programs, proposes that the National Disability Insurance Agency should increase the number and coverage of the community connector programs for First Nations people with disabilities in remote areas, and this is another clear and concise recommendation for change to practice.

Conflation of the terms “remote” and “First Nations”

A significant trend worth noting across all 12 volumes of the Final Report was in relation to the term “remote”. Remote had the highest count rate and was mentioned approximately twice as often as “regional”, and five times as often as “rural”. This focus is not reflective of national data as it is estimated that there are around 500,000 Australians living in defined remote areas. This cohort comprises only 2.2% of the entire population and less than 10% of all non-metropolitan residents (Australian Bureau of Statistics, 2023b). It was initially unclear why “remote” was over-represented, with further analysis showing that the highest individual count of the term remote was in Volume 9, First Nations people with disability, (CoA, 2023, Sept. 29, Vol.9)

This is potentially problematic as it may indicate conflation by the Commission between issues in remote areas and those for First Nations people. The merging of these issues means that any future focus on addressing the considerable disadvantage experienced by remote First Nations People may inadvertently come at the expense of First Nations people living in metropolitan areas. Similarly, it may also mean that non-First Nations people with intellectual disabilities residing in remote locations would be at risk of being overlooked if any new government initiatives are implemented.

Omission of rural and regional recommendations

As with the conflation of the terms remote and First Nations, there is a possibility that the described concentration on remote issues has potentially come at the expense of active consideration of the problems facing people with disabilities living in regional and rural areas [MM2 – MM5]. As an example of this situation, Inverell, which is located 570kms from Sydney in northern New South Wales, is defined as a small town [MM5] with a population of around 12,000 people. As mentioned earlier, it is important to not lose sight of the importance of services in rural locations like Inverell, with the apparent focus on the issues in remote Australia. Many of the rural witness reports were not from “remote” locations, and their evidence regarding poor service access in regional Australia should not be overlooked in the process of making the necessary changes to address inequities and inequalities in remote locales.

Conclusion

The Commission appears to have made a genuine attempt to ensure involvement of people with disabilities living in rural areas. This resulted in testimony from rural people with intellectual disabilities and their carers regarding the issues that they have faced. However, as identified by my colleague with lived experience of intellectual disability, it is unfortunate that the easy-read versions of the Final Report did not indicate this inclusion. This problem does highlight the broader difficulty in producing accurate easy-read versions of complicated documents, and underpins the need for appropriate review to ensure context is not lost.

Of the final 222 recommendations, ultimately just 11 were considered to be specifically aimed at addressing rural disadvantage. It is concerning that, in some key support areas, there appears to be an implicit expectation that the remaining 200+ recommendations will all apply evenly across Australia, irrespective of location. It is acknowledged that in many situations this may be the case, but there is ongoing concern that the specific needs of rural people with intellectual disabilities may have again been diluted by being simplistically included with metropolitan peers. However, a number of the 11 recommendations are noteworthy and in particular, Recommendation 10.10, Provider of last resort, outlines a potential solution to an existing problem that has been cause of significant concern for many people with intellectual disabilities residing in a rural location (CoA, 2023, Sept. 29, Rec. 10.10).

It is also worth acknowledging that the review of the NDIS (Australian Government, 2023) was released on 7 December 2023. This review contained 26 recommendations and 139 associated actions regarding changes to how disability services are provided across all of Australia. It is beyond the scope of this discussion to include any analysis of these recommendations, including any potential overlap with the Commission’s findings, but a quick review showed a number of areas of commonality. Therefore, it is important that the recommendations of both the NDIS Review and the Commission’s Final Report be considered concurrently as part of any planned improvements to the disability support system in rural Australia.

Disclosure statement

No potential conflict of interest was reported by the author(s).