A flawed model or weak implementation? A critical review of the approach to group homes taken the Disability Royal Commission

¹Accepted under the editorship of Dr Ilan Wiesel, Associate Editor, Research and Practice in Intellectual and Developmental Disabilities.

Abstract

Group homes have been an important option for people with intellectual disabilities leaving the family home or institutions. They were one focus of the Royal Commission on Violence, Abuse, Neglect and Exploitation of People with Disabilities. Much evidence was collected about harm experienced by people in group homes through submissions, and dedicated and other hearings about disability services more generally. In its Final Report the Commission considered group homes to be both a flawed model and subject to weak implementation similar to that identified across the Australian disability service system more generally. This article describes the Commission’s approach to group homes, the evidence heard, and its conclusions; and critiques its stance, processes, and recommendations, identifying links to the NDIS Review published after the Commission’s Report in 2023. The Commission’s recommended reforms to practice, and replacement of group homes with alternative options reflect current policy directions, but raise issues that will be important for implementation; including; uncertainty about alternatives to group homes, the risk of alternatives not having better outcomes and thus the loss of good services, risk of neglecting quality of support practice in new alternatives and recurrence of institutional practice in them, and potential negative impacts on existing residents of signalling group homes as a flawed model. The Commissions’ approach missed opportunities for appreciative enquiry about conditions that lead to good outcomes in some group homes. The article concludes by considering the benefits for people with intellectual disabilities of singling out long-term residents and people with complex or high support needs, together with the potential for a quicker pace of change that may result from the Commission’s work.

Keywords:

• Intellectual disabilities
• group homes
• practice
• royal commission

The terms of reference of the Royal Commission on Violence, Abuse, Neglect and Exploitation of People with Disabilities (the Commission) were broad, extending beyond inquiry about the experiences and causes of harm to its prevention and ways of promoting a more inclusive society (Commonwealth of Australia [CoA], 2023, Sept. 29, Vol. 2, p. 12). This meant exploring quality services that led to a good life for people with disabilities, as well as poor services and the bad things that happened to people. In examining group homes, the Commission pursued two lines of enquiry; the model and its alternatives, and the way group home services were delivered (implementation). These had already been well-trodden by research that had suggested the problems lay in, “the culture of institutions that persists in group homes and can only be overcome by a further move to supported living… [or] a problem of weak implementation (Mansell, 2006, p.73). The Commission observed that “group homes as an alternative to large institutions had not eliminated institutional forms of violence, abuse, neglect, and exploitation experienced by people with disability, particularly people with serious intellectual disability” (CoA, 2023, Sept. 29, Vol. 2, p. 110). This reflects conclusions of researchers 30 years ago that, “some people simply swapped long hours of boredom and isolation in an institution for more of the same in the community…” (Mansell et al., 1994, p. 69). However, as a detailed reading of the Commission’s documents shows, the picture is nuanced – many people living in group homes experience violence, abuse, neglect, and exploitation but group homes are neither uniform, nor are poor outcomes inevitable. This is demonstrated in Australian research, which shows that concerted organisational effort can improve the quality of support provided in group homes, but quality is fragile, difficult to sustain, and is particularly hard to achieve for people with more severe intellectual disabilities (Bigby et al., 2020).

The Commission’s recommendations addressed issues of weak implementation, but came down more strongly in favour of group homes as a flawed model. It recommended immediate reforms to practice in group homes (see CoA, 2023, Sept. 29, Rec. 7.41) and replacing group homes with alternative housing options, although Commissioners’ views differed about the timing for this (CoA, 2023, Sept. 29, Recs. 7.42, 7.43, 7.44). The National Disability Insurance Agency (NDIA) was already pursuing both these directions, but the Commission’s recommendations are likely to quicken the pace of change and shift the policy focus towards people with more severe intellectual disabilities who figured prominently in the Final Report.

In this article I examine the Commission’s approach to group homes, the questions asked, the evidence heard, and the conclusions reached. In describing its approach, I critique the Commission’s stance, processes, and recommendations, and where relevant, briefly identify the links between its recommendations and those of the NDIS Review (CoA, 2023, Dec.), which was published after the Commission’s report. The focus is group homes, people with intellectual disabilities, and practice, which means broader issues of housing and service regulation, addressed by other articles in this special issue, are neglected.

Focus on group homes

The Commission prioritised group homes, apparently for two reasons; first, as the Chair noted, a home should be a place where a person feels safe and secure (Hearing Report 3, 2020, Sept. 30, p. 2); and second, by characterising group homes as “closed environments” (CoA, 2023, Sept. 29, Vol. 2, p. 53), it recognised that residents faced barriers to engaging with Commission processes. The huge volume of evidence collected and the high profile of group homes across the Commission’s final 12 volumes, points to their continued significance to the disability service system and the success of the Commission’s active engagement with advocacy organisations in capturing experiences. Group homes were the sole focus of Chapter 9 in Volume 7 of the Final Report and featured across many parts of Volume 10. They were mentioned 80 times in the executive summary and in 5 recommendations, most significantly Recommendations 7.41, 7. 42, 7. 43, 7.44 (CoA, 2023, Sept. 29, Recs.).

Questions addressed

The issues paper on group homes published early in the enquiry process (CoA, 2019, Nov.) explained the Commission aimed to identify the key issues it should explore and examples of best practice by inviting responses to 10 questions. The questions centred around lived and other experiences of group homes, the use of restrictive practices, views about the quality of life of the different groups in group homes, barriers to accountability, ways to improve through better reporting or changes to staffing, the viability of the model itself, and alternatives to it. Thirty-four submissions were received by the time of a dedicated group home hearing (Hearing 3) held from 2-6 December 2019, and many more after that.

The report of Hearing 3 set out a wide range of issues for further enquiry, many similar to the earlier list. These issues were oriented towards: measures to change the quality of group homes, such as increasing choice and control, improving culture, staff skills, performance and monitoring; ways of improving safety through extending informal networks and advocacy; and, finally whether group homes could sufficiently support the exercise of rights, types of alternatives, particularly for people with severe physical or sensory disability, and the safeguards needed in different models (Hearing Report 3, 2020, Sept. 30, p. 89-95).

The evidence about group homes

Volume and types

The Commission stimulated the collection of evidence specifically about group homes but inevitably group homes featured throughout its broader investigations into the disability service system and provider organisations. The evidence came from many perspectives; people with lived experiences of group homes, family members, advocates, service providers, state government officials, the NDIA and National Disability Insurance Scheme (NDIS) Quality and Safeguards Commission (Quality and Safeguards Commission), academics, and other experts. In hearings it heard about research and many submissions and witness statements included academic papers, summaries of research or the grey literature, or links to this material. Surprisingly, given the depth of the Commission’s interest in group homes and unlike many other topics, it did not commission any external research about group homes.

In summary, testimony was heard in private sessions from 204 people living in group homes (or their advocates or family members) (CoA, 2023, Sept. 29, Vol. 1) and from 29 witnesses (many of whom also made written statements) at a dedicated 3-day hearing. The Commission published a 9-page issues paper giving a cursory overview of group homes (CoA, 2019, Nov.) and posing 10 questions, a report summarising the responses to the issues paper (CoA, 2020, Sept.), and a report of the dedicated hearing (Hearing Report 3, 2020, Sept. 30). In addition to this focused exploration, group homes featured in some case studies and other parts of hearings about disability services, particularly, in hearings 13, 14, 20, 26, and the generic hearing about services, number 32.

Nature of the evidence

The Commission gathered voluminous evidence about group homes. The majority is descriptive accounts of negative lived experiences and reflections on the negative impact of various aspects of group homes services; some posits causal factors for these and some proposes actions for change. Only a small proportion of the evidence was about best practice or alternatives to group homes.

Though technically not evidence, the 2,724 pages of private testimony (CoA, 2023, Sept. 29, Vol. 1) provide graphic and harrowing accounts of life in group homes. For example, Ellie and Siena described what happened to family member, Cynthia, a woman with intellectual disabilities.

The home accommodated five residents including Cynthia, all non-verbal. Siena remembers seeing other residents, who didn’t get regular visitors, still in their pyjamas at 4:30 pm and never going out…Bruising on Cynthia’s back and arms continued. Ellie said they were often unexplained or the explanations were implausible…There was one support worker who alerted Ellie to the abuse that was happening, but said she couldn’t tell her everything because ‘she would lose her job’…Ellie peppered the department [it is unclear whether the department was the service provider or the funder] with complaints and eventually an enquiry was held. Recommendations were made but nothing changed…Years later the support worker reported the abuse she witnessed at the house to police. This included staff forcing Cynthia to sit still against the wall for long periods. They would tape her fingers together to stop her movements and would tie her hands to the legs of the chair or behind her back…The family also learned that some staff were stealing the clothes and food Ellie bought for Cynthia. They would also purchase items for themselves out of the residents’ budgets and buy poor-quality food for the house. (CoA, 2023, Sept. 29, Vol. 1, p. 40)

Although the historic time these events occurred is not clear from the Commission’s summary, the many similar accounts leave little doubt about the urgency for change. Most tell of negative and harmful experiences, but they also give glimpses of the variability and inconsistency of group home services, some not-so-bad experiences, and the impact of external factors. For example, the excerpt from Marissa’s testimony tells of the differences to her son Brantley’s group home when the management changed,

When the government managed the home, the families of residents were consulted when new staff were employed. …The staff that were there were absolutely fabulous…Marissa said family members helped choose new staff. If we really want people like [Brantley] … to have real say, we have to be involved in that process… the new service provider didn’t seem to understand why that was important. (CoA, 2023, Sept. 29, Vol. 1, p. 410)

As well as lived experiences, the Commission heard evidence specific to group homes about the: problems of implementation, flaws of the model, examples of good practice, and potential alternative models.

Evidence about problems of implementation

The Commission heard much about aspects of the weak implementation of group home services that lead to violence, abuse, neglect, and exploitation, as well as suggestions that some of the issues were not unique to group homes. For example, the hearing report cited a witness as saying,

…violence and abuse of people with disabilities is widespread and is not confined to group homes… the problem with group homes is the ‘one size fits all’ approach which doesn’t give people choice and control over their lives and becomes a source of disempowerment and frustration… this approach is the function of cultural, governance and workforce issues. (Hearing Report 3, 2020, Sept. 30, p.48)

Much evidence pointed to the failure of organisations to structure, manage, and deliver group home services in ways that ensured people’s safety and the quality of support. Inadequacies of staff practice, training, leadership, and culture, were mentioned repeatedly as causal factors of violence and abuse. For example, the report of hearing 3 (Hearing Report 3, 2020, Sept. 30) stated that witnesses in the hearing, “stressed better supervision, management, training, and monitoring of support staff by providers was required to stop abuse”(p. 131), that the Commission had heard “group homes cannot function safely and effectively unless the organisational culture supports staff to understand their role and ensures they are well trained” (p. 139), and that there was “need for greater investment in frontline staff as a person’s experience in their home typically depends on the quality of staff that are coming in and out of [their] house and also on how well those staff are supported by an organisation with a strong culture” (p.73).

The Commission also heard that weak implementation of group home services was influenced by factors beyond the control of individual organisations. Pre NDIS, for example, scarce resources had led to crisis placements and ill-matched group home households as a witness explained,

…demand has far outstripped supply and vacancies have been offered to families and people with disability who are already in crisis. This results in people being forced to live together even if they are incompatible. (Hearing Report 3, 2020, Sept. 30, p. 47)

All of these factors were seen to contribute to the lack of choice and control experienced by people in group homes, which were repeatedly mentioned as contributing to violence, abuse, neglect and exploitation. For example,

Through our inquiry, we have heard about a range of practices and approaches that have caused or increased the risk of harm in group homes for people with disability. Key areas that have been highlighted in the evidence include lack of choice and control over daily living, as well as choice of support service provider… (CoA, 2023, Sept. 29, Vol. 7, p. 618)

Witnesses also suggested that poor quality support meant many people in group homes were isolated, without social networks or community participation, and had limited access to independent advocacy or supported decision making. Furthermore, that this led to circumstances that created vulnerability to abuse and neglect. The risks of harm for people in group homes were seen as being compounded by weak responses of provider organisations to complaints and failure to investigate incidents. For example, hearing 3 heard about,

… the importance of disability support workers understanding the role they have in supporting people to speak up for themselves, and the need to protect staff in coming forward to say something wrong is happening to a person. (Hearing Report 3, 2020, Sept. 30, p. 73)

Evidence about group homes as a flawed model

Evidence from advocates characterised group homes as a flawed model; beyond possibilities of remediation with no place in a rights-based disability services system. Much of their evidence was theoretical rather than empirical, and drew on interpretations of the United Nations Convention on the Rights of Persons with Disabilities, (UNCRPD), particularly Article 19 (United Nations, 2006). In their evidence, advocates conceptualised group homes as segregated, institutional, and closed environments, explaining how these characteristics heightened risks of violence, abuse, neglect, and exploitation and undermined human rights and quality of life. This came particularly to the fore in evidence from leading human rights lawyers, Kayess in hearing 3 (CoA, 2019, Exhibit 3-033), and Quinn in hearing 31 (CoA, 2022, Exhibit 31-003) and in their respective statements.

Kayess suggested that living in closed environments, which restrict entry and exit, limits a person’s “relationships to service providers and other people in that environment” (Hearing Report 3, 2020, Sept. 30, p. 73). In turn, this reduces protection against violence and abuse that comes from community participation, social networks and access to advocacy. Another witness in this hearing was more direct suggesting that “group homes are closed environments which can be ‘a breeding ground for human rights abuses” (p. 62).

Quinn explained in his statement to hearing 31 that group homes were segregated because the model used “impairment as a way of determining where people live” (CoA, 2022, Exhibit 31- 003). He had suggested that like closed environments, segregated services limited community participation. Furthermore, that people with disabilities often experienced forced segregation in group homes due to lack of alternatives, which in itself was a form of neglect. In her statement, Kayess explained that Article 19 of the CRPD was about ending segregation of people with disability in supported accommodation, as this was “a prime facie form of discrimination which is prohibited under Article 5 of the Convention” (CoA, 2019, Exhibit, 3-033).

Group homes were characterised as institutional by many witnesses. For example, the report of hearing 3 cited Mr Hiscoe, a self-advocate, as stating he would like to see group homes “closed altogether because he thinks they are like ‘mini institutions’” (CoA, 2020, Sept. 23), and an academic recalled a self-advocate, who had lived in a large institution as walking into a group home and saying, “That’s like an institution. Smells like an institution. You know, it’s a house in a street but this is how it feels to me’. (p. 65). The report of hearing 3 referred to a witness who had stated,

…that the group home model itself is a contributing factor to complaints, incidents…The reasons for this include that group homes replicating institutional living arrangements and implementing routines and structures often designed for the group rather than the individual. (Hearing Report 3, 2020, Sept. 30, p. 47)

In her evidence, Kayess explained the defining features of institutions set out in the UNCRPD guidelines (CoA, 2019, Exhibit, 3-033), and recommended Australia should stop building group homes. She said,

Although institutionalised settings can differ in size, name and set-up, there are certain defining elements, such as obligatory sharing of assistants with others and no or limited influence over whom one has to accept assistance from; isolation and segregation from independent life within the community; lack of control over day-to-day decisions; lack of choice over whom to live with; rigidity of routine irrespective of personal will and preferences; identical activities in the same place for a group of persons under a certain authority; a paternalistic approach in service provision; supervision of living arrangements; and usually also a disproportion in the number of persons with disability.

Evidence about best practice examples

Very little direct evidence was heard about evidence-informed best practice despite this being a declared intention in the issues paper (CoA, 2019, Nov.). Good staff or management were mentioned fleetingly in some of the private testimonies as was variability and inconsistency of services due to staff changes. The exception was the evidence, from this author about the importance of the quality of support, characteristics of culture in better group homes, and the importance of having social connections in the community, which was cited in the report of hearing 3 (CoA, 2020, Hearing Report 3, Sept. 30, p 41). Perhaps few other witnesses came forward to testify about good practice examples or the Commission did not actively pursue them. Nevertheless, there was evidence about examples of good practice in group homes, what it looked like, and its predictive factors, embedded as summaries of research findings, references to reports and academic papers in submissions, and witness statements. It can be assumed some of this material was read by Commissioners, as some elements of good practice are discussed in the Final Report and recommendations. Why this strand of evidence had a low profile is considered in the discussion section.

Evidence about alternatives to group homes

The Commission heard positive accounts of people moving out of group homes to more independent housing and support arrangements both from people with disabilities themselves and service providers in hearings 3 and 32. The range of alternatives to group homes they heard about were small scale, had seldom been evaluated, and in most cases had not included people with more severe intellectual disabilities. Examples were summarised in Volume 7 and included; a model of individual apartments, which shared 24-hour, on-call support designed for people with acquired disabilities; shared lives models, where a person lived in a supporter’s home or the supporter lived in their home; a collective accommodation initiative designed for First Nations’ people with acquired brain injury; the Key Ring model that provided support for socialisation and community participation to a network of people with intellectual disabilities living independently in their own homes; and, the NDIA Home and Living Demonstration projects. There was little description of the nature of these latter projects or the people involved. The final report suggested they had been discussed further in hearing 32, when the Commission heard that the NDIA corporate plan 2022-26 included aspirations to transition from the group home model to “innovative service models that embed a rights based approach” (CoA, 2023, Sept. 29, Vol. 10, p. 636). Research was cited in Volume 7 (p. 631) that identified the greater choice and control experienced by people who had moved from group homes to supported living situations but indicated loneliness was a problem for them. Notably, the people in this study received drop-in rather than 24-hour support.

Witnesses in hearings 3 and 32 had talked about the barriers to moving out of group homes as the shortage of accessible and or affordable housing, and the inadequacy or inflexibility of NDIS funding (CoA, 2023, Sept. 29, Vol. 7). Volume 7 of the Final Report referred to findings of the NDIS Quality and Safeguards Commission (2023) Own Motion Enquiry, which had noted similar barriers and also identified the need for more active engagement to support people to explore alternative options to group homes, navigate the market or move out (CoA, 2023, Sept. 29, Vol. 7, p. 628).

In a summary, Volume 7 cited evidence from two witnesses that, “There are limited, genuinely inclusive housing options for people with disability, particularly those with high support needs (CoA, 2023, Sept. 29, Vol. 7, p. 629). However, in the next paragraph, without further comment and somewhat contrary to this evidence, the Report went on to say,

Fully inclusive living is possible for people with disability, including those with high and complex support needs. Through our inquiry, we heard about how people with disability had benefitted from transitioning to living in accommodation of their choice, usually with the support of NDIS funding. Evidence gathered by the Royal Commission has highlighted examples where inclusive housing is already progressing in Australia. These include approaches that meet the requirements of people with disability with higher, more complex support needs. (p. 629)

The commission’s conclusions on the evidence about group homes

The Chair summed up the evidence about group homes. His conclusions alluded both to weak implementation and the inherent flaws of the group model itself, foreshadowing the Commission’s recommendations,

The evidence clearly establishes that group homes very often expose people with disability to unacceptable risks of violence, abuse, neglect and exploitation. The evidence also establishes that group homes frequently have other serious disadvantages for residents. These include a lack of choice about co-residents; few opportunities to interact with the broader community; rigid and standardised regimes; and punitive cultures…Sweeping changes are needed. Hence the many recommendations for reform …But perhaps the recommendation of greatest long-term significance is for improved access to alternative housing options. (CoA, 2023, Sept. 29, Vol. 7, p. 649)

In terms of best practice, Chapter 9 of Volume 7 indicates the Commission concluded that a model of best practice that included Active Support and Frontline Practice Leadership set out in the NDIS Quality and Safeguards Commission’s (2023) Own Motion Enquiry was the direction that should be taken. There is further reference to Active Support and other elements of best practice in group homes, in conclusions about the disability workforce more generally in the Executive Summary which stress the need “to strengthen the quality of training and supervision provided to frontline support workers” (CoA, 2023, Sept. 29, Executive Summary, p. 158)

Notably, many of the issues identified about group homes, were repeated in a summary of evidence at the beginning of Volume 10 about disability services more generally,

…failures by disability service providers to prevent violence, abuse, neglect and exploitation, or to respond effectively to complaints and incidents. It also revealed deficiencies in organisational cultures, systems, policies and practices that contributed to violence, abuse, neglect and exploitation within disability services. It suggested that many people with disability are not assisted to develop lives in which they interact and participate with others in the community. They are not supported to learn and develop the skills essential to daily living and which are needed to live and participate in the community. (CoA, 2023, Sept. 29, Vol. 10, p. 7)

The Commission concluded that problems of weak implementation were not unique to group homes, were evident across many disability services, and some were beyond the control of individual organisations, including governance, regulation, and the workforce, which were discussed in Volume 10.

Four of the six Commissioners came to much firmer conclusions about possibilities of reforming group homes than the Chair. As advocates had suggested, the four Commissioners concluded that the model was flawed, and reforms would never be enough to ensure they were places where human rights were respected. These Commissioners wrote,

We believe that it is unconscionable that segregation on the basis of impairment alone remains a policy default in Australia in the 21st century. We have concluded that the limitations that group homes place on the lives of people with disability and the deprivations and exposure to harm that can be experienced in these settings are an infringement of fundamental human rights. Consequently, we believe that group homes must be systematically phased out… reforming aspects of the group home model while still maintaining the segregation of people with disability in these settings can only be seen as an interim measure. (CoA, 2023, Sept. 29, Vol. 7, p. 640)

All six Commissioners concluded that alternatives to group homes in the form of innovative housing models offered opportunities for inclusive living. Though not defined, inclusive living could be taken to be characteristic of independent living they had heard described as core to UNCRPD Article 19 (United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), 2006), and had been told was reflected in the NDIA Home and Living Framework that was yet to published at the time of the report (CoA, 2023, Sept. 29, Vol. 10, p. 636).

In Volume 7 of the Final Report, the Commission made a point of stating that alternatives to group homes should be extended to all people with disabilities, “fully inclusive living is possible for people with disability, including those with high and complex support needs” (CoA, 2023, Sept. 29, Vol. 7, p. 629). The Commission concluded that few such models currently existed and that there was a need for,

Further investment in design, development and evaluation is required to expand the supply of sustainable housing options for people with more profound disability and/or more complex needs…. It is particularly important that all new models of alternative housing and support are robustly evaluated so they can be effectively scaled up and to build an evidence base for best practice. (p. 631)

Recommendations about group homes

As already indicated, the Commission made recommendations to reform aspects of group home implementation. Essentially these were, prioritising work on the NDIS Quality and Safeguards Commission’s (2023), Action plan from its Own Motion Enquiry, and expanding this to include; separation of housing providers from support providers, strengthening implementation of practice models such as Active Support to create opportunities for greater social interaction and community participation and inclusion; and agreeing to a timeframe and regular reporting (see CoA, 2023, Sept. 29, Rec. 7.41).

The Commission also recommended improving access to alternative housing options, through expanding existing NDIA demonstration projects, establishing a dedicated policy unit to guide development of innovative models, conducting market research, and reforming NDIS funding to improve flexibility. In addition, it recommended creating a means for people to access advice, advocacy, and support to enable them to explore, decide about, and take up alternative options. The importance of access to information and communication was also highlighted in recommendation 6.1, which suggested targeted actions were needed in this regard for people in group homes (CoA, 2023, Sept. 29, Rec. 6.1). Finally, prioritising the implementation of the NDIA’s Home and Living Framework was recommended (see CoA, 2023, Sept. 29, Recs. 7.42).

Commissioners were divided about possibilities of reform, and whether and in what time frames a complete closure of group homes should happen. Four Commissioners thought it should be within 15 years, one within a generation, and the Chair that mandated closure was unnecessary as over time demand for group homes would dwindle significantly (CoA, 2023, Sept. 29, Vol. 7, and Recs. 7.43, 7.44). The Chair suggested there was little distance between the six Commissioners, as all agreed priorities were making new alternatives available and ceasing construction of new group homes (CoA, 2023, Sept. 29, Vol. 7, p. 651).

Reflections

Uncertainty about alternatives to group homes

The united and strong position of the Commissioners about finding alternatives to group homes reflects much of the evidence they heard about a flawed model that undermined human rights. It demonstrates the Commission’s commitment to a human rights approach and its cognisance of Australia’s obligations under the UNCPRD (United Nations, 2006) as required in its terms of reference.

The recommendations are nevertheless puzzling for several reasons. First, was the lack of evidence and clarity about the alternatives to group homes, which formed the centrepiece of the recommendations. There was consensus in the Final Report about the limited evidence and meagre existence of alternative housing options. All the examples described had included people with acquired disabilities or milder intellectual disabilities; none included people with more severe or profound intellectual disabilities without family, and very few people without social networks or advocates. Despite this, people with high complex support needs, a group that includes those with more severe intellectual disabilities, were singled out for mention in the recommendations.

The lack of supporting evidence was compounded by a lack of clarity about what were variously named, ‘inclusive housing’, ‘alternative housing’, and ‘innovative housing’ options that would replace group homes. Absent too was a clear set of principles to guide designers and developers of these options, aside from high-level expected outcomes, primarily choice and control, safety and participation, and the theoretical blueprint for independent living contained in UNCRPD General Comment 5 on Article 19 (Committee on Rights of Persons with Disabilities, 2017).

The recommendations took a leap of faith into the unknown driven by human rights theory, certainly in respect of people with more severe intellectual disabilities. On one hand, this may be a good thing and be how paradigmatic change happens. However, from a pragmatic realist perspective, it is problematic. Australia’s history of failed policy ambitions and poor implementation (Monk et al., 2023; Mansell et al., 2013; Bigby et al., 2006) does not bode well for the rigorous design, evidence building, and evaluation processes the Commission suggested should be followed in developing alternative housing options. Indicative of the problem perhaps is the NDIA’s Home and Living Framework the Commission recommended be prioritised, which had already been three years in the making at the time of the Final Report, and was still not completed or at least not publicly available at the time of writing this article.

Second, the recommendations assume that alternatives to group homes will deliver better outcomes. This is not at all certain, and, if group homes are to be closed, there is a danger of losing the better ones. Research illustrates this point. Mansell (2006) demonstrated that as accommodation models progressed from large institutions to large staffed housing to small group homes, there was variability in each model, and the better, but not all, instances of each model surpassed the best outcomes reached for people with intellectual disabilities in earlier models. For example, outcomes in the best small group homes exceeded those in the best large staffed housing, but outcomes in the worst small group homes were similar or worse than the better large staffed housing.

The risks identified in Mansell’s (2006) empirical work, that some alternatives may not lead to outcomes better than group homes is also found in human rights theory. As the General Comment 5 on Article 19 explains, there is a possibility that institutional features exist in all forms of accommodation regardless of size, and warns of “the need to be prudent in the way support services are provided to people with disability because institutionalization can also happen in an individuals’ own home” (Committee on the Rights of Persons with Disabilities, 2017). Examples of the very situation described in the General Comment have been observed in the author’s ongoing study of supported accommodation for people with intellectual disabilities (unpublished data).

Third, as General Comment 5 points out, support practice and other disability services are critical to avoiding institutional features from recurring in alternative housing models. Just as the group home model combined housing and support, development and particularly the implementation of alternative housing models must give attention to support (albeit delivered separately by a different provider). A significant body of research evidence supports the significance of support practice, some of which the Commission heard or was included in submissions. For example, the report of hearing 3 cited a comment by this author “that it is the quality of the support, rather than the ‘bricks and mortar’ that makes the difference to an individual’s quality of life” (Hearing Report 3, 2020, Sept. 30, p. 39). Importantly, the report of this hearing also noted that “the safeguards necessary to ensure that alternative forms of accommodation do not expose people with disability to violence, abuse, neglect and exploitation” (p. 89) would be further investigated by the Commission.

Despite the mention of “housing options and support” in the introductory paragraph to recommendation 4.2, the discussion on this recommendation, in the last part of Chapter 9, Volume. 7, was exclusively on housing. There was no consideration, for example, of how the practice reforms (CoA, 2023, Sept. 29, Rec. 7.41) explained in the Own Motion Enquiry were applicable or may need to be adapted to support in new housing models. Nor was there discussion of how safeguards might differ in these alterative models. One could read into these omissions assumptions that new models would solve all the problems of group homes, and recommendations about reforms to practice would be redundant or superseded as group homes were replaced.

Perhaps this critique is pedantic. The point is there should be no room for misunderstanding; too often as in the early days of the NDIS, housing models have taken precedence in policy and service development, and practice within them neglected. The significance of practice to the success of alternatives to group homes must be recognised when government and providers consider and implement the Commission’s recommendations.

Importantly, the NDIS Review in its consideration of group homes or what it termed housing and 24/7 living supports, gave explicit attention to the organisation of support in the smaller and alternative models of housing it recommended. It proposed, for example, that when accommodation was shared and people lived together, specific attention must be given to the organisation and management of shared supports as well as exploring opportunities for bundling supports around each individual be explored (CoA, 2023, Dec.). It stated,

there should be increased focus on promoting safe and effective support for participants with 24/7 support needs. A new specific Practice Standard for 24/7 living supports should be developed. (p. 149)

Fourth, the Commission’s recommendations signal that group homes are a flawed model to be superseded. This may have negative consequences for people currently living in group homes and their families. It could mean low priority is given to funding reforms as these will have little longevity, and especially as these reforms were seen as interim by four Commissioners. Regardless of which recommendations are accepted, foreshadowing either cessation of the program over time or in a shorter time frame may detract from the interest and energy of organisations in improving existing group homes, particularly those that are keen to be seen as innovators and do not want to be associated with outdated models. Such concerns could be avoided by more strongly linking the significance and likely similarities between good practice and leadership in group homes and alternative housing models.

There was little media interest in the Commission’s group home recommendations compared to those about special schools. This means that any anxieties family members of people with intellectual disabilities currently in group homes have about the recommendations have not been publicly aired. Recent research found that families of people with more severe intellectual disabilities in group homes were concerned about the quality of group homes, particularly staff turnover, but were reluctant to consider moving, thinking it would be unsettling and may not improve their person’s quality of life (Bigby & Jackson, 2023). If the closure recommendations are accepted, then implementation must be carefully planned as the Final Report foreshadows. Research about the closure of large institutions, which documents initial reluctance of family members but eventual satisfaction, may give some useful insights for those charged with the implementation process (see, for example, Tøssebro & Lundeby, 2006)

A negative and ideological stance towards group homes

Collating, curating, and analysing the Commission’s evidence must have been a mammoth task for Commissioners and their staff; weighing different types of evidence, deciding how to categorise it, and which themes were dominant. The methods used were oblique, but the analysis, similar to all the Commission’s work, was through the theoretical lens of human rights, and more weight given to lived experiences. The Commission’s stance towards group homes from the outset seemed tilted towards the negative. For example: the Chair commenced hearing 3 talking about the need to explore negative assertions about group homes as places conducive to violence, neglect, abuse, and exploitation; in much of the text stereotypical and disparaging labels were applied unquestionably to group homes; prominence was given to interpretations of the UNCRPD that cast group homes as inherently restrictive of human rights and in contravention of Article 19; and assertions about the institutional nature of group homes were not interrogated to test which of the 8 characteristics described by Kayess in her evidence (CoA, 2019, Exhibit 3-033) are found in Australian group homes, as there is certainly some research that suggests not all of these characteristics are found in all group homes, particularly the better ones (Bigby et al., 2012; Bigby & Beadle-Brown, 2016).

The Commission gave little attention to collecting evidence about best practice, which the early issues paper had suggested it would do (CoA, 2019, Nov.). Maybe at some point it concluded there was little to gather, as suggested by the quote cited from an Independent Advisory Committee’s paper “while there was significant variation in the quality of group homes even, the best group homes were not that good” (CoA, 2023, Sept. 29, Vol. 7, p. 642). At times it appeared the evidence was curated towards the negative by Counsel Assisting or report writers. For example, in this author’s case this meant being led in the hearing to concentrate on abusive culture and neglect in underperforming group homes rather than the enabling respectful cultures found in better homes (Hearing Report 3, 2020, Sept. 30). Another example is, the report summarising responses to the issues paper, which failed to make any reference to the extensive work on good group homes included in the submission from the peak industry body National Disability Services (CoA, 2020, Sept).

The evidence is poignant and a balance towards negativity may be justified by the overwhelming volume that spoke to horrific individual experiences of abuse and neglect in group homes. However, opportunities were missed and much might have been learned about prevention of abuse, or building a more inclusive society had a more balanced or appreciative approach to enquiry been adopted. Much might have been learned from the exceptions, such as under what conditions do some group homes work well and why?

Relative neglect of research evidence

As already mentioned, many witnesses and submissions referenced or included research. Research was cited throughout the Final Report serendipitously rather than systematically, and often with little accompanying description of the main points or its strengths. In some places, there were omissions, errors, and misinterpretations. For example, the elements of best practice, derived from a review of the literature in the Quality and Safeguards Commission Own Motion Enquiry (NDIS Quality and Safeguards Commission, 2023) were not explained despite its prominence in Recommendation 7.41 (CoA, 2023, Sept. 29, Rec. 7.41). In several places in the Final Report, it seemed one of the elements of best practice, Active Support, had been misunderstood, as it misnamed as Active Supports, and misused as a verb rather than a noun, (e.g., under Action 2) (CoA, 2023, Sept. 29, Vol. 10, p. 627).

While recognising that enquiries such as the Commission are not expected to follow the fundamental principles of good social science (Walshe, 2019), better use could have been made of research alongside other types of evidence. In various places in the Final Report the more systematic use of research evidence could have strengthened the argument, and helped in weighing up different perspectives and clarifying issues.

The absence of commissioned research on group homes was a glaring omission, especially in light of the amount of research commissioned on other topics. This omission impacted the strength of the Commission’s enquiry about group homes. At a minimum it meant no comprehensive synopsis of research evidence about group homes or evaluation of its strength was available for non-academics. Such a summary could have acted as a reference point for Commissioners or in the future for those tasked with implementing the recommendations.

Perhaps more importantly, commissioned research could have filled some of the evidence gaps about alternative housing models, and delved deeper into the causes of weak implementation, particularly poor leadership and other workforce issues, such as training, qualifications, turnover, retention, and recruitment. Unlike the flawed model of group homes, the Commission did not actively seek out deeper or theoretical explanations for aspects of weak implementation; why do frontline support staff have such low pay and standing in the disability system; why are there no mandatory qualifications; why are they not tertiary trained professionals; why is there no required professional accreditation for managers of group homes services? The absence of a qualified or professional frontline workforce is not a sine qua non of disability service systems, as is clear from services systems in the Scandinavian countries and the Netherlands. Commissioned research would have helped in analysing and finding solutions to some of the underlying reasons for the implementation problems identified in group homes and the wider disability services system in Australia.

Clarity about group homes

It was not always clear what the Commission meant by group homes, as even the glossaries differed between reports. Sometimes ‘group home’ was used interchangeably with ‘supported accommodation’, sometimes to refer to a model of housing and support with a specific number of residents (usually four to six), sometimes to a model with an indeterminate number of residents, and sometimes only to housing for four to five people and not support. Does it matter? Concern about a lack of clarity is more than academic pedantry; it creates misunderstanding, certainly for international readers, and makes accurate data difficult to find. Clarity is important for interpreting the Commission recommendations about group homes and considering the scale and tasks of the proposed reforms, especially for whom new models should be designed and tested?

Most commonly, across the documents ‘group home’ was taken to mean a model combining housing and support for a number of people, which is also known as ‘supported accommodation’. It may not always have been the case that the Commission intended this common understanding of a group home to prevail. A quite different definition of group home used by the NDIS is cited numerous times. This threw up conceptual challenges for readers. The NDIS (Specialist Disability Accommodation Conditions) Rule 2018 defines group homes as “houses that are enrolled (or will be enrolled) [as SDA] to house four or five long term residents” (CoA, 2019, p. 2; CoA, 2023, Sept. 29, Vol. 10). This definition is specific about size, that group homes have only four or five residents, and are only housing rather than a combination of housing and support.

Size matters in the NDIS Specialist Disability Accommodation (SDA) definition of group homes and is pertinent in interpreting the Commission’s recommendations. The SDA Rules introduced in 2016, which restricted group homes to housing with four to five residents did so for a reason. These rules renamed any accommodation with six or more people, that might have previously been called a group home or residential services, as ‘legacy stock’. The cessation of funding and eventual closure of ‘legacy stock’ was embedded in these Rules (within 5 years for accommodation with 11 or more people and within 10 years for accommodation with 6-10 people) (CoA, 2023, Sept. 29, Vol. 7, p. 546). Effectively, closure of larger group homes was already a firm policy. There are few references to legacy stock in the evidence or Final Report, and while it may be assumed that at least in its recommendations the Commission was using a definition of group homes as having 4-5 residents (reflecting partially the NDIS definition) this may not be the case.

Notably, size was important in the NDIS Independent Review published in December 2023. It avoided the term group home (although the glossary defined group homes as “homes where multiple people with disability, often five or more, live together under a single roof and receive support….” (p. 288) and added various negative defining features). The review used the terms, “housing and living supports for participants who require ‘24/7 supports’ or “24/7 housing and living support” (p. 138, p.141) to refer to people living in group homes (and others). It recommended reducing the size of SDA dwellings (including group homes) to three people over time as vacancies arose and building no new housing of four bedrooms or more unless it was the choice of participants (CoA, 2023, Dec. p. 150). Interestingly, no evidence is cited as a rationale for a size of three if accommodation is to be shared and notably research is equivocal on additional benefits of a size smaller than six (Bigby & Beadle-Brown, 2018).

As already indicated, the NDIS SDA rules unbundle housing and support by defining group homes as housing for four to five people. This is very confusing for a reader not familiar with the complexities of the Australian system. The NDIS funds housing (SDA) separately from support, and refers to the 24-hour support for residents in group homes (and other forms of accommodation) as ‘supported independent living’ (SIL). The Commission heard much evidence about the benefits of separating housing and support in this way such as, opportunities for increased choice and control about housing, co-residents and support providers, and removal of providers’ conflicting interests by the same organisation not providing both housing and support. However, it was abundantly clear in the evidence that contrary to the NDIS definition and its funding rules, housing and support in group homes (however defined) remained inextricably linked; change had only been superficial and NDIS funding policies of disaggregation had yet to realise anticipated benefits. Indeed, as already mentioned the Commission recommended (see Rec. 7.41) the full separation of housing providers from support providers and access to independent advocacy and support for decision making to enable people to unlock the benefit of this separation.

Prioritising long term group home residents and those with more severe intellectual disabilities

The Commission had difficulty accurately establishing the number of people living in group homes and their characteristics, repeatedly referring to data as unreliable. Since the mid-1970s, group homes have formed the backbone of disability services for adults with intellectual disabilities (Clement & Bigby, 2010) who still make up the majority of residents. For example, Toomey, a Victorian state government official at hearing 3 stated that 86% of people in group homes had intellectual. This is changing as the NDIS matures and people with acquired disabilities (neurological conditions, chronic health problems, physical and sensory but not cognitive disabilities) move into newer group homes, and some people with intellectual disabilities move out.

The issues paper reported estimates of least 7,000 group homes, supporting 17,000 people of whom a third had mild intellectual disabilities (CoA, 2019). The source of these figures was an SBS TV program and the suggestion that a third of people supported in group homes have mild intellectual disabilities is surprising as eligibility for SDA requires ‘extreme functional impairment’ or ‘very high support needs’. However, the figures do reflect a small study, conducted pre-NDIS, that showed 30-35% of people with intellectual disabilities in group homes had similar support needs to those living with drop-in rather than 24-hour support in ordinary housing in the community (Bigby et al., 2018). Solid figures about the number and characteristics of people living in group homes will be an imperative to carrying forward the Commission’s recommendations.

Uncertain data, and the inconsistent and unclear use of terms to refer to various groupings of people with disabilities were a feature of the Commission’s report. Nevertheless, the experiences of people with intellectual disabilities in group homes featured heavily in the Commission’s evidence and its reports. Individuals were frequently identified as having intellectual disabilities and sometimes people with intellectual disabilities were named as a group, although at times they were included in the more generic term cognitive disability. People with more severe intellectual disabilities living in group homes were less commonly explicitly named but many references were made to other subgroups to which they belong. For example, the Final Report gave particular attention to a subgroup of people living in group homes whom it considered most at risk of harm; variously referring to them as people who are non-verbal and people who need a high level of support (CoA, 2023, Sept. 29, Vol. 6, p. 57), people with intellectual disability or cognitive impairment, (CoA, 2023, Sept. 29, Vol. 7, p. 650), people who had previously lived in institutions, who lacked access to informal support outside services, and who needed support for decision making and advocacy (CoA, 2023, Sept. 29, Vol. 7, p. 269). This rather ill-defined subgroup was singled out as a priority in the recommendations for development of new housing options, which referred to them as ‘people with more profound disability and or/more complex needs’ (p. 631).

Singling out subgroups that clearly included people with more severe intellectual disabilities and drawing attention to them represents a major and welcome step forward taken by the Commission. Those with more severe intellectual disabilities in group homes, seldom attract policy attention from the NDIS or advocacy groups and were largely invisible in the early work on the NDIS (Bigby, 2021). Most are long-term users of group homes, who have benefited least from the NDIS: they were rolled into the NDIS by state governments, and then, in most states, management of their homes transferred from government to non-government organisations; many are dependent on others for most aspects of daily lives, have limited access to advocacy or the supported decision making they need to formulate NDIS plans, and most have few protective mechanisms to identify risks and act on them to avoid harm. The Commission’s conclusions that they are in the subgroup most at risk of violence, abuse, neglect, and exploitation in group homes is reflected in research showing they consistently receive less and poorer quality support for day-to-day engagement than their more able peers do (Bigby et al., 2020). Retaining a focus on this group and more clearly naming them will be critical to ensuring they are not neglected further in policy and do not drop out of sight again in the implementation of foreshadowed reforms. This may be helped by the NDIS Review, which singled out a similar subgroup of group home residents; those who had transitioned into the scheme from earlier service systems whom the review recommended should be given priority in the proposed changes to housing and living supports. They also featured strongly in the Review’s consideration of people who needing supported decision making, advocacy, and specialist navigators.

Concluding comments

The treatment of group homes in the Commission’s report suggests it may be time to stop using the term ‘group home’. Presently it is an ill-defined term, sometimes synonymous with supported accommodation but sometimes not, sometimes restricted to housing a specific number of people and sometimes not, and thus includes vary variable sized accommodation. ‘Group home’ now carries unfavourable connotations, exacerbated by the Commission’s recommendations about closure. Removing group home from the lexicon and simply referring to ‘supported accommodation’ or as the NDIS Review suggests, 24/7 housing and support, may provide the clarity that will be important for implementing recommendations of both the Commission and NDIS Review.

The Commission’s enquiry into group homes could have been more rigorous, more balanced, had more clarity, and made better use of research. The Commission uncovered little about group homes that was not already in the literature. However, it conveyed the risks of harm and experiences of living in group homes more powerfully and to a much wider audience than the literature and in a way that made it difficult for government to ignore. The Commission’s approach was bolder, and less concerned with the pragmatics of cost and implementation than the NDIS Review. Both highlighted a need to prioritise change for previously neglected groups to which people with intellectual disabilities can belong: long-term residents of group homes, those without family, advocates, or community connections, and people with more profound disabilities or more complex needs, or both. Taking the recommendations of the Commission and the NDIS Review together, one might be optimistic about the future for people currently in group homes and those for whom a group home might have been their only option at some point in their life. The challenge will be implementation and reaching the stage in Mansell’s schema where all the outcomes of alternatives to group homes are better than all group homes. However, the quality of life of a person with an intellectual disability is not determined by their group home alone or whatever might replace it, but inextricably connected to the broader disability services system and nature of society. In the short term, immediate reforms to practice and a growing number of housing alternatives will have positive benefits but the full realisation of the rights of people with intellectual disabilities will rely on implementing much of the broader package of change proposed by the Commission and the NDIS Review.

Disclosure statement

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

Notes

¹ Accepted under the editorship of Dr Ilan Wiesel, Associate Editor, Research and Practice in Intellectual and Developmental Disabilities.