Introduction

We begin our chapter by introducing a case study about Henry and his lived experience of disability and restrictive practices.

Henry is happiest sitting under a tree, touching the earth, leaves and long grass that he finds there. Aged in his early 30s, Henry has been living in supported accommodation since he was 14. He is autistic, and lives with an intellectual disability and anxiety. He doesn’t speak, and has a history of using physical behaviour towards others to communicate his wants and needs.

Since his early 20s, Henry has lived by himself with 24-hour supports, assisted by two staff members at all waking hours. An assault towards a staff member when Henry was 24 years old resulted in him becoming subject to significant restrictions. His community access was limited to being taken by staff for walks in the park and to a local pool. However, after he behaved aggressively towards other people during one of these outings, Henry’s accommodation provider completed a workplace health and safety assessment, which determined that the risk of taking him into the community was too high. Henry’s access to the community then ceased. Apart from daily car rides during which he was secured by a harness into his seat, Henry did not leave his home for more than 5 years.

Henry’s home was also heavily restricted. Large parts of the home included safety glass screens to create a barrier for staff; he had only intermittent contact with support workers, occasional contact with his family and no contact with anyone else. Henry was not included in the decision-making about the restrictions that were imposed on him.

Henry’s experience may be extreme, but it is unfortunately not unique. Across the globe, people with disabilities are frequently subject to restrictive and coercive practices (Bartlett & Ellis, 2020; Fitton & Jones, 2020; Younan et al., 2024). Restrictive practices refer to physical, pharmacological, environmental, mechanical, seclusive or other punitive methods used to limit a person’s freedom of movement in response to behaviours that are deemed a problem by the people who support them (often called ‘challenging behaviours’). Restrictive practices occur in disability services, schools, prisons, aged and healthcare settings as well as family homes. Safety concerns for the person with a disability or those around them are a common justification for their use (Spivakovsky et al., 2023). And yet, restrictive practices have been shown to be stressful and painful for people with disabilities, who often have limited understanding of when or why they are to be used (Griffith et al., 2013).

There is, however, a broad policy imperative for change. The UNCRPD (2006) prohibits its 164 member states from discrimination on the basis of disability and affirms the inherent dignity and autonomy of all people with disability. The active efforts of UN Special Rapporteurs to scrutinise restrictive practices sit alongside increasing public awareness of their harmful use (see, e.g., Aguilar & Pūras, 2015; BBC, 2022; CNN, 2011; Connolly, 2023). Governments, health, education and community service authorities in countries, including Australia, Indonesia, Ireland, the United Kingdom, the United States, New Zealand, Sweden and the Netherlands, are exploring or have endorsed policy positions to reduce or eliminate the use of restrictive practices towards people with disabilities.

Despite evidence of the inherent risks of restrictive practices, policies to reduce or eliminate their use remain mostly unrealised. The perspectives of people with disabilities who are subject to restrictions are scant in research and policymaking. Where lived experience accounts do exist, people who have experienced restrictive practices emphasise both unintended consequences and preferable alternative approaches, and this has important implications for policy and practice. In this chapter, we begin by reporting on a pressing policy issue, being the lack of lived experience research used to inform current restrictive practice policy in Australia and around the world. Following on, we identify barriers and enablers to participating in restrictive practice-related disability research and policy development for people with disabilities, in particular autistic people, people with an intellectual disability and people with complex communication needs. We then extend our critical discussion about restrictive practice research and policy inclusion to cover children and young people with disabilities. Finally, we draw on our experience as practitioner-researchers to outline the need and potential scope for a lived experience research agenda that reflects the diverse profile and stories of people with disabilities who are subjected to restrictive interventions. Such an agenda will help illuminate the human costs and person-centred solutions that hold promise for the reduction or elimination of restrictive practices.

The policy issue – Few lived experience perspectives inform restrictive practice policy

From where we write in Australia, very little research draws on the experiences of people with disabilities who have been subject to restrictive practices. Instead, participatory research relating to restrictive practices tends to focus on mental health inpatient settings and the use of physical restraint, mechanical restraint and seclusion (Brophy et al., 2016; Cortis et al., 2023). Studies over the past 30 years have illuminated the human impact of restrictive practices in mental healthcare, a toll that includes emotional distress, trauma and re-traumatisation, isolation, feelings of dehumanisation and a markedly diminished sense of self (Meehan et al., 2000; Roper et al., 2021). People subject to restrictive practices in Australian mental health settings are more likely to view the practices as harmful than the professionals who implement them (Kinner et al., 2017), and it has been argued that the professional lexicon surrounding restrictive practices serves to sanitise and legitimate them (Brophy et al., 2016). Consequently, it is no surprise that a recent inquiry into the mental health system in the south-eastern state of Victoria (State of Victoria, 2021) stressed the importance of programmes being codesigned between mental health services and the people they serve, in an effort to end within the next decade the use of seclusion and restraint in the sector.

Of the lived experience research into restrictive practices that has occurred to Australians with disabilities, findings echo those from the mental health sector. As part of the national Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2023), submissions and private hearings enabled people who had been subject to restrictive practices to share their experiences. One participant explained that her experience of chemical restraint and seclusion in a hospital psychiatric ward ‘deeply added to the trauma [she] was already suffering’ (Commonwealth of Australia, 2023, p.523). Another who had been subject to chemical restraint in a youth justice setting said that he simply ‘didn’t want to see others go through this’ (Commonwealth of Australia, 2023, p. 435). In research requested by the Royal Commission, Spivakovsky et al. (2023) reviewed existing lived experience research from people with disabilities who had been subject to restrictive practices, highlighting the presence of trauma, abandonment, fear and unequal power dynamics within care relationships where restrictive practices are present. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (Commonwealth of Australia, 2023) demonstrated that the perspectives of people with disabilities who have been subjected to restrictive practices stand in contrast to contemporary Australian frameworks for supporting people with disabilities who use challenging behaviours, including frontline behavioural interventions such as positive behaviour support, which have arguably shifted the emphasis towards documenting and authorising restrictive interventions rather than reducing them (Hayward et al., 2022). Promisingly, the current Australian federal government has recently pledged extensive resources towards actioning the recommendations outlined in the report, which includes AUD 1.2 million to develop targets to reduce and eliminate restrictive practices (Ministers for the Department of Social Services, 2024

Internationally, the picture is similar. The voices of people with lived experience of restrictive practices are most evident in research related to mental health inpatient settings (Franks et al., 2021). Mental healthcare has seen an international movement towards embedding lived experience in policymaking, service design and delivery, thereby ‘harnessing the expertise of experience’ (Perkins et al., 2010, p.13). Even so, an international scoping review of 121 English-language studies related to preventing and reducing coercive practices in mental health services found few studies that had involved people who had received mental health services or been subject to involuntary interventions, either as participants or as researchers (Gooding et al., 2020).

The limited studies highlighting perspectives of people with disabilities who have been involved in decision-making related to restrictive practices hold important insights for policy and practice. For example, a synthesis of perspectives of people with intellectual disabilities and challenging behaviours (Griffith et al., 2013) showed that feeling disrespected and disempowered in residential services tends to precipitate challenging behaviours, which, in turn, leads to residents being further harmed through the use of restrictive practices. A study from Norway (Røstad et al., 2023) reviewed the restrictive practice authorisation documents for 120 people with intellectual disabilities and found that restrictive practices reduced year on year when participants were involved in describing their own life situation and empowered to make decisions relating to their care. This pattern was repeated where disability services understood the triggers of a person’s challenging behaviour and had access to an individualised support plan. These lived experience perspectives contrast starkly with responses from Swedish staff asked to consider organisational changes required to prevent restrictive practice in day services and group homes (Björne et al., 2022), in which respondents overwhelmingly identified structural changes like environmental modifications, additional staffing, training and supervision rather than resident-centred approaches, although some staff did note that low arousal alternatives could prevent the need for restrictive practices.

It is evident that opinions about the risks, benefits and viable alternatives to restrictive practices differ between people who have been subject to restrictive practices and the professionals responsible for implementing them. The current lack of lived experience perspectives in restrictive practice research therefore obstructs attempts to understand the diverse and complex experiences of people with disabilities across a variety of settings (Giri et al., 2022). This is despite the lived experience research to date indicating that the needs and priorities of the disability community cannot be met through policy or practice without centring the subjective experiences of people with disabilities (Ferguson & Nusbaum, 2012). It is perhaps for this reason that the UN Secretary General António Guterres has underscored the need for people with disabilities to be ‘fully included in decision-making processes on all issues that affect them’ (United Nations, 2023) lest progress on disability inclusion begin a backward slide.

There are some encouraging Australian and international initiatives that have involved people with disabilities in developing policy practice resources to reduce restrictive practices. In the United Kingdom, the Restraint Reduction Network Training Standards (Ridley & Leitch, 2021) were developed with the involvement of people who have experienced restraint. All mental health, learning disability and autism services funded by the UK National Health Service must be certified against these standards. Deciding with Support (Flinders University & Council for Intellectual Disability, n.d.) is a suite of accessible resources, codesigned with people with disabilities. The resources are intended to facilitate involving people with disabilities who demonstrate challenging behaviours as their own behaviour support plans are developed. While promising, these initiatives have yet to be evaluated for their efficacy in reducing restrictive practices. The State of Victoria is currently developing a strategy towards the elimination of seclusion and restraint in mental health services, using a codesign process with people who have experienced or felt at risk of experiencing restrictive practices (Department of Health, 2023); however, as noted, this strategy is still in development.

Whether in Australia or abroad, many other policy initiatives to reduce restrictive practices conspicuously lack the involvement of people who have experienced restrictive practices in their design, delivery and evaluation (Spivakovsky et al., 2023). Given the persistence of restrictive practices towards people with disability, the significant harms associated with their use and the fundamental need to include people with disabilities in all decisions that affect them, there is a clear imperative for lived experience perspectives to better inform restrictive practice policy. Below, we outline further considerations to address disability research and policy participation challenges for three groups of people with disability who are vulnerable to restrictive practices: autistic people; people with intellectual disabilities or complex communication needs; and children.

Restrictive practice-related disability research and policy – Participation barriers and enablers for autistic people, people with an intellectual disability and people with complex communication needs

There has been a growth in self-report methods for research with autistic people, indicating that this is increasingly being recognised as the most appropriate and efficacious methodology to meaningfully engage and enact positive change with this cohort (Huang et al., 2020). There is a clear need for research to be conducted with rather than about autistic people (Jones et al., 2021). Generally speaking, research involving autistic people often focuses on parents’ perspectives and opinions regarding their autistic children (Anderberg & South, 2021; Downes et al., 2020; Jacobs et al., 2020; Poslawsky et al., 2014; Rasmussen et al., 2020; Reed & Osborne, 2019). However, there is a notable scarcity of similar research for autistic adults; research on autistic adults is significantly under-represented when compared to the volume of research on autistic children (Damiano et al., 2014). Further, there is a bias of gender in the samples of many contemporary studies, where most studies of autistic adults involve a male-majority sample (Huang et al., 2020).

A common co-existing condition with autism is intellectual disability (Matson & Shoemaker, 2009); however, research samples involving participants with both diagnoses is lacking. While research does include people with intellectual disability, there are very few randomised controlled trials that are considered the ‘gold standard’ of evidence, which involves those with intellectual disability (Lennox et al., 2005). Lennox et al. (2005) described barriers to involving people with intellectual disabilities in disability research (encompassing research about restrictive practices), which include:

• Organisational barriers: ‘Top heavy’ organisations in which there are many levels of management between the nominated liaison person for the project and the potential participant with the disability, leading to inertia or blocked communication.

• Accessibility barriers: In Australia, there is no accessible register of adults with intellectual disability that can be recruited for intervention studies, making it difficult to identify and access populations to perform these studies. Additionally, some individuals may be living independently of formal supports, may have a lack of access to their community due to their disability needs or may be unknown to service organisations.

• Funding constraints: Individuals with intellectual disability and the people who support them may receive inadequate funding, contributing to a lack of connection with services that could be used for the recruitment process.

• Demands of caring: Those who care for people with intellectual disability may not have the capacity to undertake or facilitate participation in research. The study references a parent who stated that they would have liked to participate in the study as a carer, but simply did not have the energy to do so, viewing the study participation as an optional additional load which became a low priority.

• Consent issues: Many adults with intellectual disability cannot consent to participation themselves, often requiring substituted decision-making; a third party is needed to give consent on their behalf, elongating the length of the recruitment process.

• Perception of the word ‘advocacy’: Researchers described a problem with families being unfamiliar with the term, resulting in a hesitancy to be involved in research.

• Discrimination: People with intellectual disabilities and their support network may be distrustful of ‘specialists’ due to perceived negative experiences when they were supported in the past. The study did not elaborate on what these experiences were; however, this could possibly include feeling misunderstood, dismissed or not listened to.

• Ethics: Ethical limitations prevent direct recruitment of potential participants. While this safeguard is necessary to protect those with disabilities, it may also have an impact of reducing the inclusion of the person with disability or their carers in disability research.

Additionally, a scoping review of the intellectual disability literature for 2001–2015 conducted by Dean et al. (2016) identified the problem of intellectual disability research not having a consistent definition of what ‘participation’ means for this population, despite having good intentions of focussing on the outcome of including more people with intellectual disability. The researchers argued that this results in certain domains of lived experience, such as choice and responsibility, not being adequately represented in participation literature. This is an important consideration as the more consistent the literature is, the easier a consensus can be reached around the definition of participation, which can then help to inform and support approaches and policy changes involving restrictive practices that are relevant to the people with disabilities themselves.

Not using verbal language and having a severe or profound intellectual disability can severely restrict a person’s ability to communicate their experiences, even with the best supports provided. It is often those supporting the person with disability who must interpret and relay the experience, and in our experience when working with families and services, it is often these same people who are implementing the restrictive practices. Further, challenging behaviours are often adaptations to difficult environments. It is important to recognise the impact that communal-supported accommodation settings have in producing behaviours (Ramcharan et al., 2009), and how restrictive practices can be maintained by the environment, systems and supports the person with disability lives within.

As disability practitioners, we have seen that for people with intellectual disability and complex communication needs, even with the best intentions, the capacity and resources of a person’s supporters can often be a major barrier to reducing restrictive practices. The advent or increase in restrictive practices is often a risk management strategy to a challenging behaviour, coupled with deficits in resources, training, confidence, skills and knowledge within the person’s support system (Carter, 2006). This can contribute to and ultimately embed restrictive practices that often continue to be enacted even when there is no evidence that they are still required for an individual. A family’s capacity, staff attitudes, organisational culture, fear, occupational health and safety and systemic barriers, including funding limitations, all may be factors that limit opportunities for successful implementation of ‘fade out plans’. If you have an intellectual disability and live in accommodation and support settings, the timeline for restrictive practice reduction is often set based on the supporters and service management being willing and able to implement change, which may be slow to establish or never happen. Both professional staff and residents of long-term care for people with intellectual disability seek stability and predictability (Bisschops et al., 2022). Authorisation and oversight are often insufficient to assure rights to liberty and security on an equal basis of a person with disability, particularly intellectual or cognitive disability (McSherry & Maker, 2021). Richardson et al. (2019) found that restrictive practices remained for at least 3 years for people with intellectual disability or developmental delay in Australia.

For example, Giuseppe who has a severe intellectual disability, is autistic and does not use verbal language. As a child, he experienced significant trauma and entered an institution for the intellectually disabled in the 1980s in Australia. As a likely self-protective behaviour and to express his distress, he used aggressive behaviour towards others and self-harm through banging his head. Over many years, he was prescribed an increasing level of chemical restraint medication, which further decreased his ability to effectively communicate and engage with others. Giuseppe’s use of challenging behaviour to have his needs met, the inability of support staff to interpret the meaning of his communication efforts and a lack of understanding of the personal impact of restraint medication prescribed led to increases in medication throughout his 20s and 30s until Giuseppe was taking over forty individual tablets per day. After many years, the side effects from the prescribed medication cocktail brought about a painful underlying issue, although this remained undetected for some time. The condition seemed to induce Giuseppe to hit himself hard on the chest and increasingly bang his head. His actions continued to be viewed by his support service and treating doctor through the lens of challenging behaviour related to his disability, not the communication of his pain and expression of his experience. Consequently, his chemical restraint medication was increased, and a very painful gastrointestinal condition went undiagnosed and untreated for many years.

The question for researchers, policymakers, disability providers and supports should be: is the challenging behaviour of a person who does not use verbal language effectively (or is not being effectively supported by their communication partner/support worker) the voice that is communicating pain, dissatisfaction, protest and resistance? The very fact that behaviours of protest are occurring indicates that the rights of the person are not being upheld and their experience of their situation is not being heard. Amplifying their voice, listening and understanding the impact of restrictive practices must underpin the efforts to reduce or eliminate the practice of restricting the human rights of this vulnerable population.

Restrictive practice-related disability research and policy – Participation barriers and enablers for children and young people with disabilities

Arya is 10 years old. She loves learning about the solar system and singing along to the 1980s rock ballads. She lives with her parents and younger siblings. She is autistic and lives with ADHD (attention-deficit/hyperactivity disorder) and anxiety. She has been supported by a team of medical and allied health professionals since toddlerhood. Arya manages her anxiety with predictability. Knowing what to expect each day, and making choices about where, how and with whom she spends her time, help Arya to feel calm and in control. School can be a challenging place for Arya – it’s hard to make friends and she often has meltdowns when she gets home at the end of the day. Rigid rules, group activities, substitute teachers and timetable changes feel completely overwhelming. When Arya is very upset, she finds it hard to access her normal speech. Instead, she might use a few gestures or ignore the people around her. At times, she says offensive things or walks away from other people just to be left alone. Recently, Arya swore at a teacher who was telling her off in front of the class. The teacher began to cry, and so Arya was sent home. Later that day and in the weeks following, Arya talked a lot about wanting to hurt herself and wanting to disappear. She saw her psychologist and paediatrician, who recommended an atypical antipsychotic to reduce Arya’s distress and prevent further agitation. After seeking a second opinion, Arya and her parents agreed to give it a go. Since starting the medication, Arya has felt a lot better, and the school staff seem pleased too. Arya’s parents feel relieved and worried about the medication; the local authorising body considers it a chemical restraint because it was prescribed primarily to influence Arya’s behaviour, and she is deemed to be too young to provide informed consent.

Children and young people with disabilities are particularly vulnerable to the physical, social and psychological harm posed by restrictive practices. For children, being subject to restrictive practices may intersect with experiences of trauma (Baker et al., 2022), abandonment or neglect (Spivakovsky et al., 2023), abuse or bullying (Children and Young People with Disability Australia [CYDA], 2016) and discrimination (Poed et al., 2020). The use of restrictive practices with children not only undermines therapeutic relationships and interventions (Baker et al., 2022; Willis et al., 2021), but can also be catastrophic. For example, between 1993 and 2018, restraint contributed to the deaths of seventy-nine children and adolescents in disability, mental health, correctional and out-of-home care settings across the United States (Nunno et al., 2022).

While the prevalence of restrictive interventions used with children is difficult to ascertain (Baker et al., 2022), it is evident that children with disabilities may experience these practices in schools, accommodation and youth justice settings, health and community services and in the family home. These restrictions could look like being secluded at school or placed on a restricted timetable as a behaviour management strategy: locked doors, windows and pantries in residential settings that exceed reasonable child safety precautions, or the prescription of medication to sedate the child or suppress menstruation due to behavioural concerns.

There have been few documented efforts to include children in research or policymaking related to restrictive practices, although some small samples exist (see, e.g., Willis et al., 2021). There are several barriers to the meaningful involvement of children with disabilities in these activities, including:

• The additional time and cost associated with facilitating ethical research with or supporting the involvement of children with disabilities, especially in relation to potentially harmful experiences.

• Children’s learnt acceptance or normalisation of restrictive practices that occur within caregiving relationships or familiar settings (see Spivakovsky et al., 2023, pp.189–90).

• Expressive language or other communication difficulties that can make it difficult to convey the detail of their experiences or perspectives.

• Their ability to understand and provide consent due to their age and cognitive capacity.

More often, parents participate in research and advocacy efforts, speaking on behalf of their child’s experiences. In Australia, parents of children with disability have spoken of how difficult it is to access information relating to restrictive practices used in schools or how their children’s access to services was at times contingent on the use of restrictive practices (CYDA, 2016; Spivakovsky et al., 2023). Children and their parents have reflected that often, an upsetting interaction with a peer or caregiving adult or being forced into an uncomfortable environment is the trigger for the child’s challenging behaviour, which they used as a means of communicating distress or protest. This, in turn, prompts a restrictive intervention which the child also experiences as aversive (Spivakovsky et al., 2023; Willis et al., 2021). Parents offer invaluable insight into children’s experiences of restrictive practices. However, the stigma they experience in association with their child’s behaviour (McLean & Halstead, 2021), well-founded fears about trialling less restrictive alternatives (Leif et al., 2023) and comparatively high rates of parental stress (Ashworth et al., 2019) are also likely to make it more difficult for parents of children with disabilities to engage in research and advocacy efforts.

Participatory research relating to children’s experiences of restrictive practices is needed to illuminate the current scope of these practices as well as the approaches that can better protect children in different settings. Given indications that children’s use of challenging behaviours is often a response to aversive interactions and environments, describing these experiences and evaluating children’s preferred alternatives are important lines of enquiry.

The meaningful participation of children with disabilities in restrictive practice research and policymaking initiatives will require dedicated efforts from researchers. Useful strategies identified through a systemic review of research involving children and young people with disabilities (Bailey et al., 2015) include: making extra time and resourcing available to undertake research and engagement activities; ensuring supporting materials are accessible and provided in multiple formats; using flexible and engaging research activities; and remaining sensitive to the balance of power.

Given the particular vulnerability of children with disabilities to the harms of restrictive practices, it is important to underscore the need to attend to power dynamics inherent in research and policymaking processes. Activities seeking to engage children with disabilities who have been subject to restrictive practices should be separated from the services upon which the child or their family relies, offer children choices about how to engage on each occasion, ensure the availability of a trusted support person, ensure the timing and setting of each activity is convenient and comfortable for the child and their caregiver and make specialist debriefing and support accessible as required.

Co-designed research challenges and opportunities to eliminate or reduce restrictive practices – A lived experience research agenda

A good starting point for including people with disability in restrictive practice policy development is to have more accurate insights into the scope of their experiences. While inexact definitions and data lacking detail hinder policymakers’ ability to gain clarity, lived experience accounts and information on best practice interventions could elucidate some significant considerations.

Many jurisdictions and service systems routinely collect data about restrictive practices to monitor, authorise and review their use. However, this data is not always made publicly available, and the lack of consistent operational definitions across jurisdictions means that data collation and comparison are compromised (Commonwealth of Australia, 2023; Fitton & Jones, 2020; Younan et al., 2024). Quantifying restrictive practice use is further complicated by poor agreement between professionals as to which practices are restrictive and unreliable documentation of their use (Schippers et al., 2018). These factors undermine efforts to develop cohesive policy frameworks for the monitoring and authorisation of restrictive practices (Hui et al., 2016).

We propose that meaningful participation of people with disabilities in codesigned studies about restrictive practices is a priority to informing related evidence-based policies. Current research shows us that not all disability studies are focussed on the benefits that those with lived experience of disability value, which can negatively impact participation rates. Future studies should focus on these values when undergoing recruitment of participants with disabilities. McDonald et al. (2016) demonstrated that those with intellectual disabilities value participation in a study when the benefits are framed altruistically, such as helping others and educating the community on disability, as well as mentioning direct benefits for the individual, such as learning new things, meeting new people, doing something new and receiving incentives. While these findings are helpful for improving participation in those with intellectual disabilities, similar research should be conducted on other groups, especially those with co-occurring conditions often left out of disability research studies. Anecdotally, many of the people we work with have multiple disabilities, whose voices are necessary if we are to have a meaningful policy change concerning restrictive practices. Additionally, given the bias of research samples towards certain genders (e.g. autism research has tended to include male participants), participation drives or opportunities for consultation would need to be gender-specific to allow for a broader voice and to correct for existing biases.

Further, when evaluating this research base with people with intellectual disability, there is a notable gap in the samples studied when considering the level of intellectual disability. Most research involves participants with a mild or moderate intellectual disability – often, research samples lack inclusion of those with severe or profound intellectual disabilities and often lacks those with complex communication needs. More research participation, and consequently codesign of policy, is required with this group; however, it is noted that this would be a challenging endeavour that would require careful ethical consideration. People with complex communication needs, who may be non-verbal or minimally verbal, often rely on their carers to interpret their perspectives, needs and wants when communicating with others. While including a trusted support person who is familiar with the person’s communication style in the research process would increase participation rates, it also raises ethical concerns as the support person may be involved in the implementation of restrictive practices, which could lead to a confounding effect on the research outcomes.

A potential solution to this problem could be the development of a standardised method of generating a personalised communication strategy when supporting the participation of those with severe or profound intellectual disabilities and complex communication needs in research studies. Such an approach could include consultation with the person’s wider support network as well as independent observation of the person in their common environments to determine their idiosyncratic communication needs. Researchers would also have to demonstrate flexibility; as this is such a varied cohort, research methodology would have to be malleable enough to allow for varied styles of communication.

A common shortfall in existing disability research is to sample populations with a single diagnosis (Hughes, 2023). In restrictive practice research, little evidence exists about how women, children, Aboriginal people and people from LGBTQIA+ (lesbian, gay, bisexual, transgender, queer/questioning, intersex, and asexual, with the plus sign acknowledging other identities) and culturally diverse communities experience restrictive interventions (Cortis et al., 2023; Roper et al., 2021). Without this, it is not possible to undertake intersectional analysis of multiple dimensions of identity as they relate to experiences of restrictive practices. Rather than recording individual instances of restraint and seclusion performed at a service level, a more holistic profile of restrictive practices should be built around the people subject to them, and would include:

• Demographic and personal characteristics, including age, locale, gender, sexual and cultural identity, income and education status.

• Disability details, including communication preferences, diagnoses and functional capacity.

• Types of restrictive practices experienced on a routine or ad hoc basis as well as the setting, frequency and duration.

• Whether the restrictive practice was used in accordance with an individualised support plan and whether the person with disability was involved in the development of that plan.

To take a meaningful and comprehensive view of restrictive practices, it is critical that the above data takes account of the multiple service systems used by people with disabilities. People who are subject to restrictive practices may experience forms of restraint in many parts of their lives, including in their home, in health and community services and at their school or day programmes. To capture this information would require high-level co-ordination across sectors and jurisdictions or the inclusion of restrictive practice questions in large-scale representative surveys. For example, the World Health Organisation and World Bank’s Model Disability Survey (2017), which asked people with disabilities about their experience of being respected in healthcare settings and involved in treatment decisions, failed to capture information about experiences of restrictive practices.

Being able to reliably document and describe experiences of restrictive practices from the viewpoint of people with disability would illuminate groups who are more vulnerable to certain types of restrictive practices over longer periods or across multiple settings. Disaggregated data could show how restrictive practice use differs by sectors and regions, which is necessary to reliably target and evaluate policy interventions to reduce and remove restrictive practices.

Of course, descriptive statistics can only go so far. It is also critical to have a better understanding of how restrictive practices are experienced by people with disabilities and the interventions that can simultaneously maintain their safety, dignity and autonomy. Griffith et al. (2013) stressed that the findings of even small qualitative studies may be picked up and amplified through scoping reviews and systemic analyses, thereby adding weight to the burgeoning body of overall, usually quantitative, research. Qualitative research that draws specifically on how restrictive practices are experienced in different settings, such as schools or day programmes, and that gives greater voice to people with a range of diagnoses or who are disadvantaged in multiples will add necessary nuance to policy and practice conversations. For example, while it could be reasonably anticipated that environmental adjustments would help to reduce the use of restrictive practices in both specialist disability accommodation and mainstream school settings, the particular modifications required are likely to differ. Similarly, as another example, non-restrictive interventions to improve nutritional intake may be very different for a person whose food choices are primarily influenced by limited mobility or sensory aversions compared to someone living with Prader Willi Syndrome (PWS).¹ Alongside robust descriptive statistics, qualitative research can provide the detailed insights needed to effectively design and target policy and practice interventions that endeavour to offer a more powerful case to inform practice through descriptions of lived experience and participants’ lives.

Qualitative research offers more than nuance. It also holds transformative potential for people whose autonomy has been undermined by restrictive practices and the discourse that attempts to legitimate them. As McDonald et al. (2016) explained and as noted earlier, people with intellectual disabilities value the opportunity to participate in research because they value being able to help others; they want the results of the research to be shared broadly to allow their community to learn more about people with intellectual disabilities, and ultimately, utilise the information learned to improve the lives of people with intellectual disabilities. Also (as described above), the experience of restrictive practices can be profoundly damaging to an individual’s sense of self and esteem. The opportunity for people with disabilities to tell their stories and promote alternative approaches through meaningful participation in research may offer an important counterpoint to such aversive experiences. Indeed, as people who have used mental health services, Roper et al. (2021, p.17) described their participation in restrictive practice research as ‘“speaking back” to clinical power, law and the academy’. At a structural level, more participatory research is necessary to shift the current discourse away from dominant occupational health and safety considerations that have justified and sustained the use of restrictive practices (Cortis et al., 2023) towards a more person-centred and genuinely therapeutic approaches.

We propose that the following areas of exploration be prioritised by researchers and pursued through inclusive qualitative designs:

• Phenomenological studies into how different people with disabilities experience restrictive practices and their alternatives across settings. It is critical to consider how restrictive practices and less restrictive alternatives affect peoples’ well-being, development, social, economic and community participation.

• Grounded theory studies that delineate preventative and proactive alternatives to restrictive practices as well as how best to engage people with disabilities who have experienced restrictive practices in research and other decision-making forums.

• Inclusive experimental research is needed to determine which approaches can meaningfully reduce and eventually eliminate restrictive practices.

There are several limitations to existing research on the topic of reducing or eliminating restrictive practices. First, it tends to focus on organisational and professional interventions rather than those driven or codesigned by people with disabilities (McSherry & Maker, 2021). Second (as detailed earlier in this chapter), evaluative research has focused on services for people with mental illnesses or psychosocial disability, therefore failing to capture the range of contexts in which people with disabilities currently experience restrictive interventions. Third, the evidence base is not yet robust enough to chart a clear policy or practice approach to reduce, let alone eliminate, restrictive practices (Cortis et al., 2023; Gooding et al., 2020). Finally, when success in reducing restrictive practices is demonstrated, the actual felt benefits for people subject to those practices remain unclear. For example, some interventions aimed at reducing physical restraints have resulted in a concomitant increase in the use of chemical restraint (Gaskin et al., 2013).

Further experimental and quasi-experimental research is needed to help shift efforts and investment towards non-restrictive interventions that make real differences to people with disabilities. There are important indicators that service-level involvement of peers is both desired by service users and beneficial in reducing the use of restrictive practices. For example, studies from the United States (Croft & İsvan, 2015; Greenfield et al., 2008) showed that peer-led mental health respite services were associated with improved service user satisfaction and therapeutic outcomes compared to psychiatric inpatient admissions while reducing the need for environmental restrictions. Another example, from Australia, described the CHOICE project, which found that youth mental health service users who received a codesigned intervention with the support of a youth peer worker with lived experience, reported feeling more involved in treatment decisions compared to the comparison group, which led to increased satisfaction in the service (Simmons et al., 2017, 2018). We therefore suggest that emphasis be given to experimental research that considers the effectiveness of models involving people with disabilities in the reduction of restrictive practices, including individualised behaviour support, supported decision-making and peer support models.

It is important to note that people who are more vulnerable to restrictive practices may also be less likely to be included in codesigned research and policymaking. Restrictive practices exist in the context of entrenched power dynamics and discrimination faced by people with disabilities (Spivakovsky et al., 2023), which makes willing and meaningful participation in research and policymaking particularly challenging. Being labelled as someone who uses challenging behaviours can be stigmatising and acts as an additional barrier. It is essential that researchers and other professionals seeking to involve people with disabilities who have been subject to restrictive practices in decision-making forums use person-centred approaches to prevent and respond to any challenging behaviours that might arise during the course of their activities.

Conclusion

Our case study (at the start of this chapter) provided a brief overview of Henry who, over the years, had many comprehensive behaviour support plans, including clear planning to fade out the many restrictive practices he was subject to. Initially, the restrictive practices were implemented and increased for Henry over time to mitigate occupational health and safety (OHS) risks and perceived risks to the community. With the introduction of a new disability service, the harm being inflicted upon Henry by the seclusion and chemical restraints were recognised. Empathising with the magnitude of his experience and the personal impact of long-term isolation, lack of connection, poor quality of life and denial of human rights was the initial consideration in planning for his new service and supports. It was when the gravity of harms were recognised as damaging and dangerous to Henry and given equal consideration within the risk assessment that decisive steps were taken to reduce the restrictions placed upon him. With supports strongly focused on valuing Henry’s rights and experience, he now has access to his kitchen, food and drink, goes out into the community with supports regularly, does activities at home and has experienced and enjoyed regular activities outside the walls of his accommodation. His team is energised by the positive changes for Henry and is focused on continuing to build his quality of life and reduce restrictions further.

This chapter has outlined the critical need for people with disabilities to be more meaningfully involved in research and policymaking related to restrictive practices. From our perspective of working with children, young people and adults who continue to experience restrictions across many aspects of their lives, we have highlighted the transformative potential of lived experience perspectives; perspectives that can shift the discourse surrounding restrictive practices and advance promising alternatives. This chapter has identified several priority areas for lived experience research and practical considerations to more meaningfully involve people with disabilities in the drive to reduce and eliminate restrictive practices.

Please note that the case studies described in this chapter are based on real experiences. Names and identifying details have been changed to protect individual privacy.