Reading and reviewing Australia’s Disability Commission Report and its impact on people with intellectual disabilities

This editorial introduces the first of a two-part Special Issue¹ on the Disability Royal Commission and People with Intellectual Disabilities that analyse the potential impact of the Commission on the lives of people with intellectual disabilities and the service systems they use. These are collections of thoughtful and critical analyses of the Commission’s findings and recommendations that, by focusing on the issues most relevant for people with intellectual disabilities, provide a counterpoint to the dedifferentiated (all of disability) approach taken by the Commission. This first editorial provides background on the Commission’s scope, examines government responses to date, and gives a rudimentary guide to navigating the Commission’s outputs and website, as well as briefly introducing the articles in this Issue. We take a more critical approach in the editorial for Part 2 of the Special Issue, by analysing the common themes raised by these articles about the directions of research, theory, and service systems that impact on the lives of people with intellectual disabilities.

Background

Australia’s Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, now commonly known as the Disability Royal Commission (Commission), was established in April 2019, after many years of concerted pressure by disability advocacy groups. The Commission’s far-ranging mandate was set out in four pages of ‘Letters Patent’, and its powers derived from the Royal Commissions Act 1902 (Cth) and its subsequent amendments. The Commission was required to,

inquire into what governments, institutions and the community should do to prevent and better protect people with disability from experiencing all forms of violence, abuse, neglect and exploitation, across all settings and contexts. …[and] what should be done to promote a more inclusive society that supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation. (Commonwealth of Australia (CoA), 2023, Sept. 29, Vol. 2, p. 3)

The Commission delivered its 12-volume Final Report on 29 September, 2023, which included one volume that detailed its approach to the enquiry (Commonwealth of Australia (CoA), 2023, Sept. 29, Vol. 2). The backgrounds of the six commissioners detailed in Volume 2 were diverse. The Chair, Commissioner Sackville, had been an appellate judge of the New South Wales Supreme Court and a judge of the Federal Court of Australia, with a history of chairing major public inquiries. Commissioner Bennett had held Commonwealth Government senior executive positions in social policy and women’s affairs, and had personal experience as a parent of a person with a disability. Commissioner Galbally had been a prominent disability advocate for many years, and is a person with a disability who has held senior positions in government and non-government organisations and served on the Board of the National Disability Insurance Agency. Commissioner Mason is a First Nations woman and former chief executive of a community service provider. Commissioner McEwin is a lawyer, a former Commonwealth Disability Discrimination Commissioner, and is a person with a disability. Commissioner Ryan was a former Minister for Disability in the New South Wales Government. There were initially seven Commissioners, but Commissioner Atkinson, a former judge of the Queensland Supreme Court, resigned for personal reasons in 2021.

The Commission appointed a number of senior advisors, among whom were leading disability advocates and people with disabilities. It also established several advisory groups whose members included representatives from First Nations people, people from culturally and linguistically diverse backgrounds, and various disability-specific groups, such as people with psycho-social disabilities. However, we note that only one person with an intellectual disability is named among the array of advisors to the Commission. This is despite the sheer weight of numbers of people with intellectual disabilities compared to other disability groups, the increasing rhetoric about the importance of their inclusion, and international exemplars of appointments of people with intellectual disabilities to senior positions in similar types of initiatives (Department of Health, United Kingdom, 2001).

Over the 5 years of its existence, approximately $527.9 million was directly invested in the Commission’s work. The Commission held 33 public hearings in a range of settings, including capital cities and regional locations. Hearings were live streamed, captured by video for later viewing, and complete transcripts of the proceedings produced. All submissions from counsel and other documents tendered in hearings were uploaded to the Commission’s website, and Reports from some hearings were published. The Commission conducted 1,785 private sessions as well as receiving 7,944 submissions from individuals and organisations. Not all of these were published, with priority seemingly given to narratives from people with disabilities and their families (1,586 were published on the website) and creative submissions in the form of poems or artwork. Publications included 28 commissioned Research Reports, 14 Issues Papers, and 14 Responses to Issues Papers, Transcripts and Reports of 2 Roundtables, an Interim Report, 7 Progress Reports, and 16 Public Hearing Reports. In addition, the Commission held a long list of community engagements that included several workshops and roundtable discussions. The Final Report stacks around 40 centimetres in height. On any particular issue, there are dangers in reading in only one volume, as the Commission’s analysis is intertwined, and at times not consistent across the various volumes.

Most of the Commission’s papers and reports were translated into easy read, and short videos were made with key points. The quality of these is difficult to judge. The example from Wark (2024), who illustrated the absence of ‘regional, ‘rural’, and ‘remote’ from the easy read versions compared to 869 mentions in the full version, does raise some concern about whether the easy read versions captured the essence of these documents.

The Commission made 222 recommendations, of which just eight were not unanimous (Commonwealth of Australia (CoA), 2023, Sept. 29, Executive Summary). These eight recommendations included some important issues and most were particularly relevant to people with intellectual disabilities:

• Recommendation 4.4: A proposal to extend the Disability Rights Act to private and not-for-profit NDIS providers from the Act’s commencement.

• Recommendation 6.20: A proposal for the Australian Government to withdraw its interpretative declaration about Article 12 of the Convention on the Rights of Persons with Disabilities in relation to individual’s decision-making rights

• Recommendations 7.14 and 7.15: A proposal to phase out special education settings, compared to a proposal to maintain special education subject to conditions

• Recommendations 7.30 and 7.32: A proposal to phase out Australian Disability Enterprises by 2034 and to end segregated employment

• Recommendations 7.43 and 7.44: A proposal to phase out group homes within 15 years, compared to a proposal to phase them out over a generation.

The Commission was more ideologically driven than previous Australian Royal Commissions. Its Letters Patent, or terms of reference, from Commonwealth and state governments used wording taken from the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006) and explicitly referred to the Convention (Commonwealth of Australia (CoA), 2023, Sept. 29, Vol. 2). There is likely no other final report of a national commission of inquiry anywhere in the world that begins with an explanation of the human rights approach in all its manifestations such as recognition of intersectionality.

The breadth of the Commission’s work was remarkable. It delved into the many diverse sectors, service systems, and policies that impact on the lives of people with disabilities, as well as seeking out their perspectives on their own lived experiences. Much of the evidence heard by the Commission considered the quality of life and service experiences of people with intellectual disabilities, although they were seldom identified as a distinct group.

Unlike the Royal Commission into Institutional Responses to Child Sexual Abuse, the Commission did not report evidence akin to “concealed abuse and shielded perpetrators” (Commonwealth of Australia (CoA), 2017, p. 44,) at the institutional level. Rather, it documented powerful examples of abuse and neglect focusing on its contexts and institutional-centric rather than person-centred responses. In comparison with the Royal Commission into Aged Care Quality and Safety (Commonwealth of Australia (CoA), 2021), the Commission had a much broader terms of reference. This was a strength as it allowed issues to be understood in their broadest context, but also a weakness in that consideration of some vitally important issues were rushed. For example, the breadth of issues about quality-of-service delivery that were squeezed into Public Hearing 32 (‘Service providers revisited’), meant they were not given the attention they merited.

Initial public reactions to the Commission’s Final Report were perhaps muted because of two factors. First, the sheer size and complexity of the Final Report and its recommendations made quick analysis challenging. Second, the split views of commissioners on key recommendations about special schools, supported employment and shared accommodation made reporting complex, and media attention often focused on the Commissioners’ dissention rather than the issue itself (e.g., Loney, 2023; Visentin, 2023).

For us as researchers and editors, following the work of the Commission was at times gut-wrenching and frustrating, as well as at times enlightening. It was gut-wrenching to hear the many examples of violence, abuse, neglect, and exploitation of people with disabilities. Volume 1 of the Final Report (in three separate books) is compelling reading as it documents the experiences of people with disabilities (many of whom have intellectual disabilities), their parents and other family members, and, in some instances, workers (Commonwealth of Australia (CoA), 2023. Sept. 29, Vol. 1). Following the work of the Commission was also frustrating in many ways. For example, its focus on negative experiences and poor-quality services meant positive experiences and factors that underlie production of good quality services went unexplored. A further example is that some of the issues traversed by the Commission, such as school education and supported decision-making, had already been the subject to significant research, multiple inquiries and reports with inadequate responses by many governments. However, across the entirety of the Commission’s work, and on some particular issues, the work of the Commission was enlightening, as the articles in this Special Issue (Parts 1 and 2) demonstrate.

Academics, service providers, and commentators followed the various parts of the Commission’s work of particular interest to them. Few will have had the time to synthesise this emerging body of knowledge. Fewer still will have considered the extent to which the Commission drew out the issues most relevant to people with intellectual disabilities and the implications of its work for this group of people. This Special Issue (Parts 1 and 2) aims to publish a set of articles that critically analyse aspects of the Commission’s findings and recommendations that are relevant to people with intellectual disabilities. Via a call for papers, authors were encouraged to select a topic based on their expertise and to write a focused and concise summary and critique of the Commission’s work around their chosen topic. Inevitably, the topics covered in both Parts 1 and 2 of this Special Issue represent the interests of the authors who responded to the call for papers rather than a curated collection of the most significant topics.

Government reactions

The recommendations of the Commission might have a far-reaching impact on future policy and practice, although the ability of governments to ignore or resist the recommendations of Royal Commissions should not be underestimated (Walshe, 2019). Originally promised within six months, governments now indicate their responses will take longer (Commonwealth of Australia (CoA), 2024b). Some of the Commission’s recommendations require action by the Commonwealth, some by states and territories, and some coordinated action by both levels of government. The complexity of cross-jurisdictional responses to the breadth of the Commission’s recommendations was compounded by the release, in December 2023, of the Independent Review of the National Disability Insurance Scheme (NDIS), which had been commissioned by the new Labor Government when the Commission was already on foot (Commonwealth of Australia (CoA), 2023, Dec. 7). The NDIS Review crosscuts many of the Commission’s recommendations, although with much stronger realist and economic lenses. Thus, at the time of writing (April, 2024), the disability community and service systems are in limbo, waiting and trying to second guess how the Commonwealth and each of the state and territory governments will respond to both the Commission and NDIS Independent Review’s recommendations. To further complicate matters, the Commonwealth Government has commissioned yet another review – the NDIS Provider and Worker Registration Task Force (Commonwealth of Australia (CoA), 2024a) – to consider mandatory registration of providers, as recommended by the NDIS Independent Review, and mandatory registration of workers, as recommended by both the Commission and the NDIS Independent Review. The challenges of gaining coordinated policy and processes in a system of federated government are discussed by John Chesterman in Part 1 of this Special Issue.

Researching the Royal Commission

For the benefit of interested researchers and commentators, we briefly offer some guidance on the types and location of the numerous outputs of the Commission. We use the headings and structure of the Commission’s website (https://disability.royalcommission.gov.au/), as this is where most of the content is found.

• Publications. Here are some but by no means all of the Commission’s published documents. Included are the 12 volumes of the Final Report; the interim report; progress reports; issues papers and responses to issues papers; commissioned external research reports and other publications, some produced by commission staff (all under the heading ‘research program’); public hearing reports (not all hearings had reports); and reports on the two roundtables on supported decision making and guardianship.

• Submissions and private sessions. Here are personal narratives (some are similar to those found in Volume 1), creative submissions (artwork and poems), and some of the organisational submissions. The organisational submissions are indexed by topic and the site has a search function.

• Public hearings. Here for each hearing is: the opening submission of Counsel Assisting; witness lists; transcripts and videos of hearings; exhibits (submissions from expert witnesses or documents requested from witnesses during the hearing); and submissions from counsel.

• News and events. Here are: media releases; the Commission’s newsletter “Connect”; a list of community forums held; the topics of 8 workshops with summaries of the issues discussed and any follow-up action by the Commission; and an outline of the Commission’s responses to COVID 19, including information in a number of community languages.

• Document library. Here is a searchable database of 7,735 documents or recordings, which can be sorted by document type.

• Contact and support. Here under ‘order resources’ is an online order form for free hard copies of most of the Commission’s publications.

Not available are the records of the deliberations of the Commissioners about which the reader only gains partial insight from the text of the Final Report. Several articles published in this two-part Special Issue try to connect the information available to the Commission and to the Commissioners’ finding and recommendations. For example, Christine Bigby (Bigby, 2024) does this in her article on group homes, as do Shih-Ning Then and Christine Bigby (Then & Bigby, 2024) in their article on supported decision-making.

Introducing the articles in Part 1 of the Special Issue

Christine Bigby’s article on group homes raises the important question of whether the abuse and neglect experienced by people with intellectual disabilities in group homes is the result of a flawed model or poor implementation of the model, raising challenging issues for both proponents and opponents of this service type (Bigby, 2024). A second article on housing is by Ilan Wiesel, who focuses on broader housing options. Wiesel argues that the Commission failed to address the fundamental issue of shortages in public and community housing (Wiesel, 2024). Alan Hough analyses the Commission’s commentary and recommendations on regulating disability service provision by the NDIS Quality and Safeguards Commission, concluding that the recommendations - while largely appropriate - cannot overcome classic trade-offs in regulatory policy and practice (Hough, 2024). John Chesterman’s article on adult safeguarding commends the Commission’s recommendations, observing that if implemented, they will reshape Australia’s adult safeguarding environment. However, he raises the issue whether political will exists to achieve this transformation (Chesterman, 2024).

Petra Bjorne offers an international perspective to the Commission’s analysis and recommendations on positive behaviour support. A key point she makes is that an absence of restrictive practices does not necessarily equate to a good life with safe and quality service delivery (Björne, 2024). In her article on domestic and family violence, Sally Robinson argues that the Commission did not go far enough in tackling the siloed approaches of governments (Robinson, 2024). The importance of implementation features heavily in the articles in the Special Issue. Shih-Ning Then and Christine Bigby analyse the Commission’s recommendations about supported decision-making, concluding that the Commission focused too heavily on issues of guardianship and administration, ignoring other important contexts in which decisions are made, and supported decision-making should be a critical part of every professionals practice (Then & Bigby, 2024). Glenys Mann, Lynsey Kennedy-Wood, and Linda Gilmore discuss the role of parents in inclusive education for students with intellectual disabilities (Mann et al., 2024). This is the first of several articles – including others to be published in the next issue (Part 2) – viewing the challenges facing people with intellectual disabilities from a relational perspective. Stuart Wark investigates the Commission’s focus on regional, rural, and remote issues affecting people with intellectual disabilities, identifying that the Commission gave more attention to remote environments than to regional and rural locations, despite the fact that more people live in the latter than the former (Wark, 2024). In the final article, Bernadette Curryer, Michelle Donelly, and Kim Roots discuss the Commission’s promotion of including people with intellectual disabilities on governing boards, arguing that the Commission missed the importance of issues around implementation (Curryer et al. 2024).

The Special Issue – Part 2

Work on the second part of the Special Issue is well-advanced and articles will be posted online under the “latest article” tab as soon as they are finalised. There will be a good range of additional thought-provoking articles on topics including education, health, and Positive Behaviour Support. In the Editorial for Part 2 of the Special Issue, we plan to draw together themes across the articles in both issues, noting the strengths in the Commission’s approach but also important gaps. We will also raise what we believe to be important general questions about the state of research and theorising about the lives of people with intellectual disabilities.

Notes

1 Volume 11 (2024) of Research and Practice in Intellectual and Developmental Disabilities (RAPIDD) has been devoted exclusively to the Special Issue on the Disability Royal Commission and People with Intellectual Disabilities: Part 1 for publication in Issue 1 (July, 2024); Part 2 for publication in Issue 2 (November, 2024). The Editorial for Part 2 of the Special Issue is available freely online at https://doi.org/10.1080/23297018.2024.2353269