*Article* **Inclusive Research in Health, Rehabilitation and Assistive Technology: Beyond the Binary of the 'Researcher' and the 'Researched'**

**Natasha Layton 1,\* , Em Bould <sup>2</sup> , Ricky Buchanan <sup>3</sup> , Jonathon Bredin <sup>4</sup> and Libby Callaway 1,2**


**Abstract:** The principle of 'working with, not on' people with disabilities is widely espoused within inclusive research, yet historically such opportunities have not been fully realized. This paper speaks from the perspective of users of health, rehabilitation, assistive technology services, and the academics with whom they collaborate. We draw on Australia's Disability Inclusive Research Principles to reflect on the practice of inclusive research across the areas of assistive technology policy, digital information, and health access, as well as the co-design of allied health resources. We consider and provide examples of how power and knowledge play out in health and rehabilitation, the developing discourse around consumer co-design and co-production, and the challenges of enacting inclusive research. This paper is about shared power in the mechanisms of research production and our journeys towards it. Engaging in inclusive research has enabled us to assume roles beyond the binary of the 'researcher' and the 'researched'. We conclude by proposing an adaptation of the ladder of participation for inclusive research.

**Keywords:** inclusion; research methods; health; rehabilitation; assistive technology; consumer-led

#### **1. Introduction**

To understand 'what is' (ontology), strategies and methods are used to uncover sources of knowledge (this is 'how we know', or epistemology). Different fields of research tackle this in different ways. This paper considers knowledge from the perspective of academic researchers working in the area of health, rehabilitation, and information, communication, and assistive technologies, where traditionally the evidence has been largely based on medical and socio-technical approaches. Challenges to the mainstream scientific world view come from the disability academy and from indigenous ways of knowing. These counter views suggest that professionalism may be oppressive, that scientific knowledge is partial, and that lived experience is often unheard (Friere 1972). Contrasting perspectives include social, critical–realist, and other models of disability and culturally sound ways of knowing (Friere 1972; Thomas 2007; Corker and Shakespeare 2002).

On a practical level today, this translates into a range of guidance to bridge these different approaches and inform practice in health and disability research. For example, frameworks such as the World Health Organization International Classification of Functioning, Disability, and Health (WHO ICF) (WHO 2001), combine medical and social views into a biopsychosocial model. Following, as a signatory to the United Nations Convention on the Rights of Persons with Disability (Stein et al. 2009; United Nations 2006), Australia's health, rehabilitation, and disability sectors are moving to enshrine consumer centeredness in service design and delivery (ACSQHC 2012; Department of Health 2018). Parallel fields,

**Citation:** Layton, Natasha, Em Bould, Ricky Buchanan, Jonathon Bredin, and Libby Callaway. 2022. Inclusive Research in Health, Rehabilitation and Assistive Technology: Beyond the Binary of the 'Researcher' and the 'Researched'. *Social Sciences* 11: 233. https://doi.org/10.3390/ socsci11060233

Academic Editor: Patricia O'Brien

Received: 12 January 2022 Accepted: 17 May 2022 Published: 25 May 2022

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**Copyright:** © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

such as design and social science, have engaged over decades in co-design (Arnstein 1969; Jasanoff 2004; NCOSS 2022) as a paradigm and method to include multiple voices and share power. Co-design tools (People with Disabilities Western Australia 2020) and projects (Bould and Callaway 2021; Layton et al. 2021) are emerging for disability in Australia.

From the perspective of health and rehabilitation, but turning to research (rather than practice), evidence-based practice principles explicitly call for a triumvirate of best quality evidence, professional expertise, and consumer and community knowledge (Sackett et al. 2000). The consumer aspect, however, remains under-realized (Hill 2011) and may be difficult to enact in some organizational settings (Lofgren et al. 2011). For example, challenges have been noted with enacting co-design/consumer involvement in health research, including limited or tokenistic roles, limited time allocation for authentic engagement, and difficulty acquiring tacit research skills and knowledge (Slattery et al. 2020).

The field of intellectual disability research has a relatively long engagement with inclusive research principles (Johnson and Walmsley 2010; O'Brien et al. 2014; Riches et al. 2020), including a consensus statement on how to conduct inclusive health research with the intellectual disability community (Frankena et al. 2019). Academics propose potential models (Bigby et al. 2014) and principles (Disability Inclusive Research Collaboration 2012) for inclusive research. Arguably, the inclusive research paradigm for intellectual disability is further developed than inclusive research in rehabilitation and health. Indeed, as intellectual disability research is largely published in separate journals and not in journals on rehabilitation research and practice, we suggest that health and rehabilitation researchers who would benefit from epistemologies on 'working with the experts', are not hearing about them.

#### **2. How Does This Influence Our Knowing and Doing?**

Speaking as academics and practitioners working in health, disability, and academic structures (Authors LC, EB and LC), evidence-based practice principles enable us to include consumers' perspectives in our methods. However, often institutional and funder requirements—whilst calling for consumer representation—still require the demonstration and evaluation of research track records, performance metrics, and evidence of highly qualified team members whose research methods are seen as scientific. As our examples will show, 'scientific method' may unwittingly skew views of truth.

Speaking as consumers of rehabilitation, health, and assistive technology interventions, and as participants in research and lived experience experts on these topics (Authors RB and JB), we have some rights in relation to what our services should look like and some roles in how to design them. However, we find legitimate research roles are limited to being researched, being consulted, joining project advisory groups, or 'being examples'. The continuum of community and consumer engagement in health, rehabilitation, and assistive technology research has been well-documented. Within this, recognition that if we are to move beyond such limited roles of 'being researched and consulted' to true co-researcher roles and research leadership by people with lived experience expertise, the benefits will be significant. They also come with the requirement for more time and funding commitment for authentic participation (Manafo et al. 2018).

This paper aims to represent the varied perspectives of users of health, rehabilitation, and assistive technology services and the academics with whom they collaborate to: (1) reflect on the practice of inclusive research across health, rehabilitation, and assistive technology, using Australia's Disability Inclusive Research Principles; (2) provide examples to consider how shared power and knowledge play out in health and rehabilitation, and the developing discourse around consumer co-design and co-production; and (3) outline some of the challenges of enacting inclusive research.

### **3. What Do Disability Inclusive Research Principles Look Like in the Fields of Health and Rehabilitation?**

We have selected a set of Inclusive Research Principles (DIRP) (Australian Disability Research Agenda Collaboration 2018) to guide our thinking about inclusive research. These principles were developed by the Disability Inclusive Research Collaboration (DIRCC), a group of organizations for people with disability, universities, and research centers in Australia that came together in 2014 at the University of Sydney for the Research rights: Disability—Inclusion—and Change Conference. The set of principles were developed to guide the organizing committee in developing the conference agenda, and were also presented in opening addresses (DIRCC 2012). We have reflected upon and developed plain language explanations of each of these principles (see Table 1 below).

**Table 1.** Disability Inclusive Research Principles with Plain Language Explanations.


We will now present three research journeys from health and rehabilitation settings that we have led. Our reflections on the inclusive research principles are indicated in bold font:

#### **Example 1.** *Assistive technology: research that is directed by assistive technology users themselves.*

In the State of Victoria, Australia, an alliance of people living with disability, assistive technology practitioners, advocates, and academics (the 'Aids and Equipment Action Alliance') was formed in response to perceived policy failures in public provision of AT. This multi-stakeholder alliance **led a research endeavor** by commissioning the philanthropically funded project *The Equipping Inclusion Studies* (Layton et al. 2010). More than 50% of the alliance steering group for this research were people with lived experiences of disability. We ensured the **right people asked the right questions** by turning the purpose and mission of the Alliance (to provide evidence to influence government policy) into the research questions. We ensured the **research design** was participatory and inclusive through use of methods which sought the views of Victorian adults with a disability about AT needs and outcomes. Authors NL and RB were engaged in this research, and the experience of undertaking commissioned research and 'working for' people with disabilities profoundly shaped the research process (Layton et al. 2017). This happened in several ways. In terms of **consent**, standard ethics processes assume anonymity is required for people with disability, however the alliance took issue with this perceived conflation of disability and vulnerability, and sought ethics modification to enable people to be named and 'own their own data' (Layton and Wilson 2009). In terms of **inclusive and participatory approaches**, we wanted to use methods which ensure voices of people with disability are validated as data: the alliance felt this was important. It seemed self-evident that the research design must include everyone, and when it was discovered that fully accessible online survey methods did not exist, we created one (Gottliebsen et al. 2010). **Co-presenting** is essential: once the research was complete the roles of co-authorship, disseminator of findings, and knowledge translator, were actively taken on by alliance members alongside and beyond the academic researchers (Layton et al. 2012; Layton et al. 2014), and continues to date with a set of personal outcome tools under development by a consortia of AT users and research partners (Buchanan and Layton 2019; Layton and Callaway 2020). No presentation occurs without personal stories to contextualize the content, and sometimes it is necessary to redefine what research is. When we identified an inherent disability bias in standardized data collection instruments for quality of life, steps were taken to address this with instrument authors to both address the impact of this bias and to revise the tool (Layton and Wilson 2010).

### **Example 2.** *Moving beyond the binary of 'therapist and the client', and the 'researcher and the researched'*

In Australia, there are a range of options people with disabilities may consider to meet their goals for community living across their lifespan, whilst addressing their disabilityrelated support needs (Callaway et al. 2020). One of these is a coordinated approach to the provision of both highly-accessible housing and support, called Specialist Disability Accommodation (SDA). Authors JB and LC first met when a new approach to SDA provision had been developed and located on the border of a large University campus in the State of Victoria. This accommodation included a new collaborative model of allied health student fieldwork education through which tenants could work with students on their nominated personal goals. JB accepted an offer of tenancy at this SDA in 2015. At that time, LC was designing the model, supervising students delivering fieldwork hours, and establishing a framework for multi-stakeholder research evaluation to ensure research was **informed by people with disability** and other key stakeholders. From that time, JB and LC developed a collegiate and collaborative relationship, co-designing student education opportunities, and the evaluation framework. As JB notes: 'I think if people with disabilities want a brighter

future, we should want to train others—I've personally learnt five times more than I give through this process'. Now into its seventh year, and expanded across regions of Victoria as well as into Tasmania, we draw on occupational therapy and lived experience expertise equally, and with mutual benefit, to inform both education and research design, translation and impact. The work is built on shared trust, and timely identification when things will or will not work, or have or have not worked, enabling honest and open conversations about this. This includes discussion about projects, and when JB feels he would or would not add value in contribution to research projects or student education activities. think if people with disabilities want a brighter future, we should want to train others— I've personally learnt five times more than I give through this process'. Now into its seventh year, and expanded across regions of Victoria as well as into Tasmania, we draw on occupational therapy and lived experience expertise equally, and with mutual benefit, to inform both education and research design, translation and impact. The work is built on shared trust, and timely identification when things will or will not work, or have or have not worked, enabling honest and open conversations about this. This includes discussion about projects, and when JB feels he would or would not add value in

*Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 5 of 14

*researched'* 

**Example 2.** *Moving beyond the binary of 'therapist and the client', and the 'researcher and the* 

In Australia, there are a range of options people with disabilities may consider to meet their goals for community living across their lifespan, whilst addressing their disability-related support needs (Callaway et al. 2020). One of these is a coordinated approach to the provision of both highly-accessible housing and support, called Specialist Disability Accommodation (SDA). Authors JB and LC first met when a new approach to SDA provision had been developed and located on the border of a large University campus in the State of Victoria. This accommodation included a new collaborative model of allied health student fieldwork education through which tenants could work with students on their nominated personal goals. JB accepted an offer of tenancy at this SDA in 2015. At that time, LC was designing the model, supervising students delivering fieldwork hours, and establishing a framework for multi-stakeholder research evaluation to ensure research was **informed by people with disability** and other key stakeholders. From that time, JB and LC developed a collegiate and collaborative relationship, codesigning student education opportunities, and the evaluation framework. As JB notes: 'I

This approach has aided **redefining what research is**, with both process and outcome evaluation built into each placement block JB co-designs. Moving beyond this first phase of collaborative work, and the binary of 'therapist and the client' and the 'researcher and the researched', **ownership** has become central to our collaborative model of both research and education practice. JB draws on his lived experience expertise, and LC on her allied health research and practice knowledge, in combined presentations of these varied perspectives (see Figure 1). JB's lived experience expertise is drawn upon using a co-researcher approach, with human research ethics committee approvals in place and **co-presenting** of research evaluation findings (Callaway et al. 2017a, 2021). contribution to research projects or student education activities. This approach has aided **redefining what research is**, with both process and outcome evaluation built into each placement block JB co-designs. Moving beyond this first phase of collaborative work, and the binary of 'therapist and the client' and the 'researcher and the researched', **ownership** has become central to our collaborative model of both research and education practice. JB draws on his lived experience expertise, and LC on her allied health research and practice knowledge, in combined presentations of these varied perspectives (see Figure 1). JB's lived experience expertise is drawn upon using a coresearcher approach, with human research ethics committee approvals in place and **copresenting** of research evaluation findings (Callaway et al. 2017a, 2021).

**Figure 1.** Co-presenting [left to right] colleague LF (Acknowledging our colleague L.F.), and authors NL, JB, and LC at Occupational Therapy Australia—Victoria conference panel. Source: Personal photo of author NL.

**The range of types of research activities undertaken** has been expanded over the last seven years. JB has now delivered a number of paid co-researcher roles (National Disability Research Partnership 2021) and joint supervision of student project work, with both JB and LC holding roles on the new National Disability Research Partnership Community of Practice (www.ndrp.org.au (accessed on 12 January 2022)). For shared knowledge translation, activities have included joint conference presentations (Callaway et al. 2017a, 2021), invited guest lecture and/or speaker roles at universities, disabled person organization events or professional forums, and joint authorship in the media (Callaway et al. 2017a). Recognition and nomination for awards relevant to JB's individual performance have also been successful (see Figure 2).

performance have also been successful (see Figure 2).

**Figure 1.** Co-presenting [left to right] colleague LF (Acknowledging our colleague L.F.), and authors NL, JB, and LC at Occupational Therapy Australia—Victoria conference panel. Source: Personal

**The range of types of research activities undertaken** has been expanded over the last seven years. JB has now delivered a number of paid co-researcher roles (National Disability Research Partnership 2021) and joint supervision of student project work, with both JB and LC holding roles on the new National Disability Research Partnership Community of Practice (www.ndrp.org.au (accessed on 12 January 2022)). For shared knowledge translation, activities have included joint conference presentations (Callaway et al. 2017a, 2021), invited guest lecture and/or speaker roles at universities, disabled person organization events or professional forums, and joint authorship in the media (Callaway et al. 2017a). Recognition and nomination for awards relevant to JB's individual

**Figure 2.** National Year of Digital Inclusion Award Recipients, including JB (pictured at front, seated in a powered wheelchair). Source: https://www.godigi.org.au/blog/congratulations-our-nationalyear-digital-inclusion-award-recipients (accessed on 12 January 2022). **Figure 2.** National Year of Digital Inclusion Award Recipients, including JB (pictured at front, seated in a powered wheelchair). Source: https://www.godigi.org.au/blog/congratulations-our-nationalyear-digital-inclusion-award-recipients (accessed on 12 January 2022).

Throughout these range of activities, consideration of **materials (and methods) that are accessible** has been important. Strategies include requesting questions for JB prior to the event so he can use his preferred Augmentative and Alternative Communication (AAC) device to prepare responses; utilizing online forum text box chats for two-way communication between JB and LV (via direct message), or ourselves and the audience during live presentations; and scheduling JB as the first speaker during presentations so that he can then respond using his preferred AAC whilst others are presenting. Our shared aim is that the **research we deliver transfers through to real life**, linking to both practice and policy (Callaway et al. 2017a, 2017b). Throughout these range of activities, consideration of **materials (and methods) that are accessible** has been important. Strategies include requesting questions for JB prior to the event so he can use his preferred Augmentative and Alternative Communication (AAC) device to prepare responses; utilizing online forum text box chats for two-way communication between JB and LV (via direct message), or ourselves and the audience during live presentations; and scheduling JB as the first speaker during presentations so that he can then respond using his preferred AAC whilst others are presenting. Our shared aim is that the **research we deliver transfers through to real life**, linking to both practice and policy (Callaway et al. 2017a, 2017b).

#### **Example 3.** *Co-design of allied health resources.* **Example 3.** *Co-design of allied health resources.*

photo of author NL.

In 2020, the 'My Allied Health Space' team which includes authors NL, EB, JB and LC partnered with the Victorian Government Department of Health to develop digital resources with two overarching goals: (1) ensure people with disability and their supporters have access to information and resources to guide selection and evaluation of disability workforce over time; and (2) ensure health professionals can assess and grow their own work capability to work with people with disability. In 2020, the 'My Allied Health Space' team which includes authors NL, EB, JB and LC partnered with the Victorian Government Department of Health to develop digital resources with two overarching goals: (1) ensure people with disability and their supporters have access to information and resources to guide selection and evaluation of disability workforce over time; and (2) ensure health professionals can assess and grow their own work capability to work with people with disability.

Often website design does not offer digital or information access for some people, including those with disability. However, the Council of Australian Governments jointly signed a 10-year National Disability Strategy in 2010 which espouses the need for inclusive and accessible communities, including digital information and communication technologies. Emphasis in this project was on being **inclusive** and **accessible**, so the clarity of the message being communicated and the functionality of the information matched the user's requirements.

This project used consumer co-design principles with a cross-institutional, interdisciplinary team of academic researchers, people with disability and the health professionals working with them. To ensure **the right people asked the right questions**, regular team meetings were held to plan, explore, develop, and deliver both resources and checklists for people with disabilities and their families and friends, and training content for allied health professionals.

**Inclusive and participatory approaches** were utilized to ensure outputs **transferred through to real-life**. People with disabilities and health professionals worked with EB

to lead the production of video training content. Information that was not accessible was identified. For example, the term 'Aboriginal self-determination' was not familiar to one person with disability. They said: *"I've never actually had to think of it as Aboriginal self-determination. I consulted with some Elders in my community and we decided to put it as an Aboriginal perspective the topic should be 'being supportive of Aboriginal sovereignty as an allied health worker'".* Their video content aligns with many of the Disability Inclusive Principles, when asked what was most important to them when working with allied health professionals:

. . . *being listened to, to be understood, and have a right to interact on our terms, and have the outcomes we choose in a timeframe we choose. We need to sit and talk as equals respectfully. We don't need to be talked down to. We also need to feel relaxed, and know it's okay for us to speak up. After generations of control of our people, and being kept away from education and its benefits, we still feel the effects* . . . *We don't expect much, but what we do expect is respect, dignity, understanding, and choice. You need to talk to us mobs in the terms we understand. We don't understand everything you are talking about, so talk to us in our words, don't use your jargon, bring it down, right down, to an equal level where we get it, we understand and we feel comfortable.*

An advisory committee was also formed for the duration of the design process. This committee included people with disability, Victorian government representatives and allied health and disabled persons' organization representatives. The project also received approval from Monash University Human Research Ethics Committee, and **consent** was received from 30 people with disability, 150 health professionals and 54 allied health educators who contributed to co-design workshops over a period of eight months to inform iterative design of the digital resources. Feedback from each workshop was incorporated into subsequent design iterations until consensus on design was gained via informants across the two stakeholder groups.

The features of My Allied Health Space (www.myalliedhealthspace.org (accessed on 12 January 2022)) offer **a range of types of activities** which include: (1) dual website and information sheet view options (standard or Easy Read view) so the user can choose their preferred or the most accessible digital information style; (2) multiple mixed information resources (captioned video, image and written content) so that the user has choice of a range of information resources and tools, offered in varied formats; (3) AAA-**accessibility** to respond to the circumstances of a range of people who may use varied and alternative methods for digital access (e.g., screen reader; voice control for direct access; eye gaze or switch control of computer systems); and (4) a comprehensive, interactive learning management system for allied health professionals broken into multiple modules for selfpaced learning. These approaches have led to a user-centered design being delivered, with **ownership** shared across all team members. All have been listed as contributors on the website, along with the logo of the organizations in which they work.

The narratives above have summarized a range of strategies to enact and deliver disability inclusive research.

**What may be the challenges of enacting inclusive research?**

Checklists and outputs are unlikely to ensure the principles of inclusion are met, and indeed we must ensure that signaling a few markers of inclusion will not pass muster. We work in the health and rehabilitation space, and conducting inclusive research within biomedical paradigms brought us face to face with a range of boundary issues/pragmatic constraints. We describe two of these here, related to **co-presenting**; and to **redefining what research is**, where we observe we were unable to fully realize inclusive research principles.

The lived experience experts of My Allied Health Space were listed as co-authors on one abstract (Callaway et al. 2021a) but not on another (Callaway et al. 2021b) with both papers presented by only one listed author. This is due to two factors. Firstly, presenters at conferences are usually required to register to attend, and registrations are costly and most often are out of pocket expenses of the presenter(s). Secondly, the strict time limit

of presentations, eight minutes, and 15 min respectively, make co-presenting by multiple speakers problematic (even with pre-recording presentations, which was the case for these conferences occurring during the height of the COVID-19 pandemic in Victoria). For another project, authors EB and LC included two people with disability as co-presenters for a conference, and were subsequently sent instructions as to the format of the recording, which included uploading two separate files, a PowerPoint, and a video of the presentation. It was not possible for all four co-presenters to be in the same room, as one presenter was in hospital. This co-presenter sent an audio file for their part of the presentation. Strategies were required to ensure inclusion of another co-presenter. They needed to record in bitesize segments, and were more comfortable with audio than a video recording. For consistency EB also recorded audio, so there was no video of any of the presenters. The audio files were edited together to give the impression that we had all presented together, and to ensure the presentation was within the time limit, short or long pauses were cut from the recording, and the speed of some audio clips were slightly adjusted. After uploaded the two files we received the following reply:

*Thanks for your presentation. It is excellent. I do however, need a separate video file and ppt [PowerPoint] file for consistency. All other presenters have sent the two separate files. Sorry for the inconvenience, but can you please send the two files separately, as per the instructions.*

The strategies we used for inclusion of all speakers were explained to the conference organizers, and they were apologetic, and they said we did not need to redo a videoed version of the presentation. This flexibility is needed for all conferences to ensure inclusion of people with disabilities.

This principle is echoed by RB, a disabled woman<sup>1</sup> with lived experience of being bedridden and homebound (www.notdoneliving.net/just-invisible.html (accessed on 12 January 2022)). RB states,

*If you were talking to people about making a conference accessible, people will talk about interpreters, ramps, things like that. Or a deafblind person who needs tactile interpreting. Or a person with intellectual disability who needs cognitive accessibility. But I need virtual accessibility* . . . *and to drop me* . . . *just because I am the only one talking about it, its terrible.*

The exclusion of people who, in research terms, may be an 'n of 1' serves to further marginalize the person who is most marginalized in the first place'.

This point brings us to fundamental questions about how to enact the principle of '**redefining what research is**' uncovered an epistemological tensions (Hathcoat et al. 2019). As RB describes her experiences as a research 'outlier':

*When you come to me with a questionnaire, and it says to me, is my answer a or b, and I say well actually my answer is c,d,e,f and sometimes z, then I don't want the researcher to say well sorry that's impossible, I want them to say 'hey wow—you are the person with the disability'* . . . *my lived experience is real, I want to be believed as a person with disability and if what I say doesn't fit with your paradigm, that means your paradigm is wrong. If what I say is something that your theory says is impossible, that doesn't mean that my experience hasn't happened, it means your theory needs to be revised, and that what collaborative research is about—that my experience is just as important as your theory or your paradigm.*

As a researcher trained in psychology and health systems research, EB reflects upon RB words and highlights some potential areas in need of change.

*When learning about how to do good research, you are told about all the steps you need to take to ensure rigor in the planning, execution and reporting. You learn about the pros and cons of each methodology. For surveys, the advantages are that they enable you to obtain a large amount of data from a representative sample, so that the results are generalizable to a specific population. One of the disadvantages of surveys being that* *the data is unlikely to contain the same level of depth as interviews or focus groups. You learn how to analyze data, and in the case of closed-ended questions, where respondents select 'other', about techniques you can use to interrogate those responses to identify themes, or the most common responses. You learn that it is not a requirement to provide every possible breakdown of the data, rather you need to present the highlights, or those findings that are statistical and/or have practical significance. So, consequently, if only one participant answers 'z', their response gets left out of the findings. The same is true in research using interviews or focus groups as the methodology. Thematic analysis of the data similarly requires the researcher(s) to examine the data to identify common themes that come up repeatedly. However, there are instances where a response is a one-off, there is no theme, and whilst it is not included in the findings I can see how this could lead participants such as RB feeling that their voice had not been heard, or worse still completely ignored when reading the findings.*

*RB also mentioned the need for theories to sometimes be revised, which can often be easier said than done, as people (i.e., reviewers, editors) can be much more accepting of 'confirming' evidence. For example,* . . . *a review in 2005 found significant results are more likely to be published (Dubben and Beck-Bornholdt 2005). The source of this problem is unknown, is it failure of the researcher(s) to write up the study, failure to submit for review, or failure for the paper to be accepted by a journal. Consequences of leaving non-significant findings unreported, apart from an unproductive expenditure of time and funding, are the potential to impede progress, prevent the creation of new theories or the revision of existing theories. Ferguson and Heene (2012) reported that publication bias can lead researchers to conduct studies and analyze results in ways that minimizes the danger of non-significant results. This too, is something I have encountered in the very early stages of my research career. I recall running an experiment and analyzing the data and the results being insignificant. However, rather than our data and findings offering the potential to revise an existing theory, I was told that our non-significant findings were due to having some outliers in the sample. I was subsequently asked to re-advertise and repeat the study with some 'replacement' participants, and re-run the analysis. In such a pursuit to obtain statistically significant findings that support an existing theory, it seemed like we were potentially removing important information about the variability we had encountered, and overestimating the true effect of the existing theory.*

These examples and directions are drawn together in the discussion, with a proposed way forward.

#### **4. Discussion**

We agree with the question posed by Milner and colleagues that 'academic researchers might want to check how far inclusive methods had travelled down a road intended to change the power relationships that underwrite knowledge production' (Milner et al. 2020, p. 127). These examples of inclusive research in health, rehabilitation, and assistive technology can be described as partial. Despite our best efforts, there are many factors which limit the full realization of co-produced and inclusive work. Based on the above learnings we suggest a progressive model is needed, but must go hand in hand with research governance and practice that builds, rather than inadvertently blocks, inclusion for all.

Arnstein's (1969) ladder of citizen participation provides a useful approach (Callaway et al. 2020). Originally it presented a hierarchy of citizen participation from nonparticipation through to tokenism and ending with the ideal of citizen control. In the last decade, however, the ladder concept has been applied to consumer participation, broadly moving through rungs of 'doing to' (coercing, educating); 'doing for' (informing, consulting, engaging); 'doing with' (co-designing, co-producing) and arriving at 'doing for themselves' (co-delivery, co-ownership) (New Economics Foundation 2012; People with Disabilities Western Australia 2020).

We draw on this co-design and co-production thinking to propose a revised ladder of participation suitable for inclusive research (see Figure 3). Our proposed classification of research roles recognizes that all researchers may hold roles as a research subject; a research consultant; a research collaborator; a research colleague or a director of research who contributes to or is in charge of the mechanisms of research production. *Soc. Sci.* **2022**, *11*, x FOR PEER REVIEW 11 of 14

**Figure 3.** Ladder of research inclusion. **Figure 3.** Ladder of research inclusion.

**5. Conclusions** 

Such a ladder will, at a minimum, alert those involved with research as to its potential emancipatory opportunities and enable claims of 'inclusive and co-designed' research to be interrogated. To accept the premise that people with lived experience can, and should, engage across all aspects of research production will require a changed ontological positioning on the part of academic researchers and lived experience experts like us who have been acculturated into roles predetermined by 'the academy'. Such a ladder will, at a minimum, alert those involved with research as to its potential emancipatory opportunities and enable claims of 'inclusive and co-designed' research to be interrogated. To accept the premise that people with lived experience can, and should, engage across all aspects of research production will require a changed ontological positioning on the part of academic researchers and lived experience experts like us who have been acculturated into roles predetermined by 'the academy'.

To enact the ladder and deliver on inclusion will require a range of conversations and strategies. A shift towards intersectionality (Gressgård 2008) is a key epistemological tool. Discourse amongst intellectual disability thinkers (Jones et al. 2020; O'Brien 2020) explores whether participants in research will assume differentiated roles based on what they bring, or whether group collaboration will play out, knowing the right people are in the room and each will do according to their capability. Strategies such as engaging in a strengths-based dialogue about what each person brings to the research endeavor may serve to bring rehabilitation researchers on this journey. And attention to the ways in which this inclusive view might be adopted by stakeholders holding power in research environments, for example research funders and ethics boards, would be a further step on the road toward inclusion (Gaventa 2006). To enact the ladder and deliver on inclusion will require a range of conversations and strategies. A shift towards intersectionality (Gressgård 2008) is a key epistemological tool. Discourse amongst intellectual disability thinkers (Jones et al. 2020; O'Brien 2020) explores whether participants in research will assume differentiated roles based on what they bring, or whether group collaboration will play out, knowing the right people are in the room and each will do according to their capability. Strategies such as engaging in a strengths-based dialogue about what each person brings to the research endeavor may serve to bring rehabilitation researchers on this journey. And attention to the ways in which this inclusive view might be adopted by stakeholders holding power in research environments, for example research funders and ethics boards, would be a further step on the road toward inclusion (Gaventa 2006).

In our introduction, we asked how our knowing and doing is influenced, and we

our knowledge, our skills, and our position on the trajectory of learning how to do research are all intersecting qualities. These are poorly articulated by the binary of

#### **5. Conclusions**

In our introduction, we asked how our knowing and doing is influenced, and we framed our answer from the position of practitioner and consumer researchers. But really, our knowledge, our skills, and our position on the trajectory of learning how to do research are all intersecting qualities. These are poorly articulated by the binary of 'researcher', and person with disability or the 'researched'. We know that our knowledge is likely to be partial as our positioning which, by definition, does not encompass the positions of all others. Exploring the practice of inclusive research across the areas of assistive technology policy; digital health access; and the co-design of housing and support, demonstrates a lag in the inclusive credentials of thinking about inclusion in rehabilitation research. Explicit strategies, such as the ladder of inclusive research participation, may enable the implicit role (and power) entrenchment in health and medical research to be illuminated, discussed and redressed.

**Author Contributions:** Conceptualization, N.L., L.C., E.B. and R.B.; methodology, N.L., L.C. and R.B.; writing—original draft preparation, N.L.; writing—review and editing, N.L., L.C., E.B., J.B. and R.B. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research received no external funding.

**Institutional Review Board Statement:** The study was conducted in accordance with the Declaration of Helsinki. No ethical approval was required as this article does not report on research conducted with human subjects. Research discussed in the article has been published elsewhere with appropriate ethical approvals.

**Informed Consent Statement:** Authors on this article are informed contributors and informed consent processes do not apply.

**Data Availability Statement:** Data is contained within the article.

**Conflicts of Interest:** The authors declare no conflict of interest.

#### **Note**

#### **References**

Australian Commission on Safety and Quality in Health Care (ACSQHC). 2012. *Safety and Quality Improvement Guide Standard 2: Partnering with Consumers*. Sydney: ACSQHC.

Arnstein, Sherry. 1969. A ladder of citizen participation. *Journal of the American Planning Association* 35: 216–24.


Corker, Mairain, and Tom Shakespeare, eds. 2002. *Disability Postmodernity—Embodying Disability Theory*. New York: Bloomsbury. Department of Health. 2018. *Stakeholder Engagement Framework*; Canberra: Department of Health, Australian Government.

<sup>1</sup> R.B. chooses to describe herself with these words.


United Nations. 2006. *Convention on the Rights of Persons with Disabilities and Optional Protocol*. Geneva: United Nations. World Health Organisation (WHO). 2001. *International Classification of Functioning, Disability and Health*. Geneva: WHO.

## *Article* **Reflecting on the Value of Community Researchers in Criminal Justice Research Projects**

**Caroline Doyle <sup>1</sup> , Sophie Yates 1,\* and Jen Hargrave 2,3**


**Abstract:** While the importance of community researchers has long been acknowledged in disability studies, inclusive research practices such as these are less common in research about another marginalised group: people who are in prison or have spent time in prison. Over the past decade in Australia, the number and rate of people imprisoned has risen rapidly, and recidivism rates remain high, indicating a need for improved services. In this article, we draw on methodological reflections from two case studies on research with marginalised communities, one in disability studies and one in post-prison research. We apply insights from disability research to argue the importance of incorporating community researchers in qualitative research projects seeking to explore the experiences of people involved with the criminal justice system, such as people who have been released from prison.

**Keywords:** disability; inclusive research; community researchers; prisoners; former prisoners; criminal justice system

#### **1. Introduction**

Over the past decade in Australia, the number and rate of people imprisoned has risen rapidly, and by 2019 the Australian prison population was at its highest-ever recorded level (ABS 2019). A majority of people in Australian prisons have been incarcerated before, with prison and unstable housing or homelessness representing a 'revolving door' for many individuals (Baldry et al. 2018; COAG 2016; Schetzer and StreetCare 2013). People who have spent time in prison are disproportionately likely to face a range of challenges and intersections between oppressive social structures such as mental and physical ill health, disability, substance abuse, socioeconomic disadvantage, racism, and stigma of criminal history (AIHW 2019; Western 2018; Johns 2017; Young et al. 2017).

Community researchers (also known as peer researchers or participant researchers) are members of the community or group being researched. It is increasingly acknowledged that community researchers are important when exploring research issues that impact marginalised (sometimes termed 'vulnerable') populations, such as people with disability.<sup>1</sup> Community researchers are beneficial for academic research teams because they have unique knowledge of the problems to be investigated by virtue of their lived experience, can increase the real-world impact of projects by making sure the concerns and interests of the marginalised groups are central to the research, and have the methodological potential to help academic researchers access (and anticipate participation barriers for) 'hard to reach' populations. For the community researchers, involvement in research can be empowering, allow their voices to be heard regarding issues that concern their communities, build selfadvocacy, and provide training, skills, and new job opportunities (Edwards and Alexander 2011; Strnadová et al. 2020; Warr et al. 2011).

**Citation:** Doyle, Caroline, Sophie Yates, and Jen Hargrave. 2022. Reflecting on the Value of Community Researchers in Criminal Justice Research Projects. *Social Sciences* 11: 166. https://doi.org/ 10.3390/socsci11040166

Academic Editor: Patricia O'Brien

Received: 29 November 2021 Accepted: 31 March 2022 Published: 6 April 2022

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

This article draws from two case studies to argue the importance of an underutilised resource in criminal justice research: incorporating community researchers in qualitative research projects seeking to explore the experiences of people involved with the criminal justice system (here focusing particularly on people who have been released from prison). We firstly review relevant literature on people with disability in prisons and their experiences post-release. We show how characteristics associated with marginalisation intersect within this population. We then consider the benefits and challenges associated with conducting qualitative research about people's experiences after their release from prison. The article then moves to the first case study, a qualitative research project which investigated gendered barriers to women's participation in individualised disability funding schemes. This project employed a community researcher, and we provide a reflection from both the academic and community researchers on how they worked together and what each brought to the project. The second case is a qualitative research project that investigated the experiences of people following their release from the only adult prison in the Australian Capital Territory (the ACT). This project did not employ a community researcher and we provide a reflection from the academic researcher regarding the challenges associated with recruiting participants and developing trust and rapport with participants.

Drawing from these case studies, we argue that when conducting qualitative research about the experiences of people exiting prison, academic researchers should strongly consider an inclusive research design, specifically the engagement of community researchers. Whilst the importance of community researchers has been acknowledged in the disability literature for several decades as part of the movement towards 'inclusive research' or 'participatory research' (Bigby et al. 2014; Nind and Vinha 2014; Vaughan et al. 2019), these practices are far less developed and employed in research about people who are currently in prison or have spent time in prison (Awenat et al. 2018; Haarmans et al. 2020; Watson and van der Meulen 2019). This is particularly true in Australia (Doyle et al. 2021a; Lewis and Ditloff 2021). We argue that employing community researchers in this space is important as people in prison, or who have spent time in prison, are likely to experience a complex intersection of marginalising social structures such as race, mental ill health, and socioeconomic disadvantage. Insights about inclusive disability research are also likely to apply to criminal justice research, as there is considerable overlap between the disability and prison populations—up to 30% of the Australian prison population are known to have chronic health conditions that limit their ability to participate in daily tasks, education, or employment (AIHW 2019). We therefore recommend that qualitative academic researchers investigating the experiences of people following their release from prison should ensure they engage with community researchers in their efforts to gain a holistic understanding of the post-release experience. By gaining this understanding, academic researchers will be better placed to provide insights into designing and implementing more appropriate policies and programs for this population, during incarceration and post-release.

#### **2. The Experiences of People in Prison**

It is widely acknowledged that people in Australian prisons are a disadvantaged group. They commonly have high rates of chronic and infectious disease, alcohol and other drug dependence, and mental illness (AIHW 2019; Butler et al. 2007; Dias et al. 2013). The AIHW conducted a prison census in 2018 and found that around 30% of prison entrants self-reported having a chronic health condition (which the AIHW considered as analogous to disability) that affected their participation in day-to-day activities, education, or employment (AIHW 2019). Internationally, the overrepresentation of people in prison with intellectual disability is of particular concern, with estimates ranging from 2–40% of the prison population, depending on the methodological, diagnostic frameworks and terminology adopted by researchers (Dias et al. 2013; Hellenbach et al. 2017; Hayes et al. 2007; Jones 2007; Young et al. 2017).

Upon release from prison, people face a range of challenges. These includes systemic barriers that lead to their exclusion from basic needs such as secure and stable housing (especially housing that is suited to disability access requirements, such as proximity to public transport and social services) and employment (including support to transfer skills gained in prison) (Doyle et al. 2020, 2021b; Baldry et al. 2018; Johns 2017; Schetzer and StreetCare 2013). As well as structural exclusion, people can face underlying identity-based and confidence issues in their efforts to obtain and maintain employment (Cherney and Fitzgerald 2016; Doyle et al. 2021b; Johns 2017). This points to the importance of postrelease support and the need for a continuum of care to extend beyond the prison and into the community (Baldry et al. 2018; Cherney and Fitzgerald 2016; Johns 2017; Schetzer and StreetCare 2013). The post-release challenges are further compounded for people with disability, as they often have complex physical health, mental health, and substance use treatment needs (Bhandari et al. 2015; Dias et al. 2013; Heslop et al. 2014; Young et al. 2017). Scott and Havercamp (2014) argue that increased support is needed in the community for people with intellectual disability upon release from prison.

#### **3. Research Methods for Investigating the Experiences of Marginalised Populations**

There is a long-established tradition of qualitative research with people with disability (Barnes 1992; O'Day and Killeen 2002). Following the social model of disability—in which impairments are seen as disabling for individuals due to socially imposed barriers such as inadequate transportation, unsuitable infrastructure, and discriminatory attitudes— Berger and Lorenz (2016) argue that qualitative methods are best suited for exploring the social experiences of people with disabilities in ableist societies. They are important for establishing how the impairment itself, societal attitudes, and public programs combine to shape an individual's experiences (O'Day and Killeen 2002). In disability research, qualitative methods are tied strongly to an interpretive approach to knowledge production, in which academic researchers acknowledge their positionality and the impossibility of achieving objectivity, and aim to get to know the social world being studied first-hand. Academic researchers in this tradition try to understand and depict the social world as it exists for those being investigated (Barnes 1992).

The importance of community researchers has been acknowledged in the disability studies field since the 1990s, forming part of the movement towards 'inclusive research' or 'participatory research' (Bigby et al. 2014; Nind and Vinha 2014; Ward and Simons 1998). Community researchers have also been employed with many other marginalised populations, such as drug users, residents of socioeconomically disadvantaged neighbourhoods, and sex workers (Warr et al. 2011). In Australia, Aboriginal and Torres Strait Islander community researchers have been employed to assist academic researchers with ensuring research projects are community-led (Bell et al. 2021).

Community researchers have unique knowledge of the problems to be investigated by virtue of their lived experience. They can draw on their networks to increase the research team's access to participants in the disability community, and can plan and design research in ways that improve the potential of the research to uncover useful information (for example, by anticipating barriers to participation) (Strnadová et al. 2020). When conducting interviews, community researchers may be able to more easily build rapport through shared experiences (Warr et al. 2017)—although as Barnes (1992) notes, disability experiences and impairments are varied and having an impairment will not automatically lead to a good understanding of disability. For the community researchers, involvement in research can be empowering, allow their voices to be heard regarding issues that concern their communities, build self-advocacy, and provide training, skills, and new job opportunities (Strnadová et al. 2020; Warr et al. 2011). Benefits for academic researchers without disability include personal growth and the development of new skills, such as greater understanding of the disability community and the challenges facing it and better ways of putting knowledge into action, as well as the potential to achieve greater real-world impact for their research (Strnadová et al. 2020).

Whilst the importance of community researchers has long been acknowledged in disability studies, the employment of community researchers and other inclusive research or participatory research practices is comparatively underdeveloped in projects investigating the experiences of people serving time in prison and upon release (see Abbott et al. 2018; Awenat et al. 2018; Crabtree et al. 2016; Doyle et al. 2021a; Haarmans et al. 2020; Lewis and Ditloff 2021; Sullivan et al. 2008). The limited literature available on service user involvement in prison and post-prison research sometimes conflates service users as *participants* contributing data, with service users as research *co-collaborators* guiding and influencing the study as a whole (Awenat et al. 2018). However, a convict criminology movement has been developing, particularly in the United States and United Kingdom (UK). Convict criminology generally refers to research by people in prison (or who have spent time in prison) who have combined their prison experience with a higher degree in criminology (Earle 2018; Ross et al. 2016).

One study that did reflect on how access barriers to current prisoners altered the scope of their research is Watson and van der Meulen (2019). They concluded that it would have been advantageous to include people who have spent time in prison in their research design, data collection, and analysis as it could have improved not only the quality of the research but also contributed to supporting the skill development and personal capacity of this population. A UK study by Awenat et al. (2018) involved former offenders with lived experience of suicidal thoughts or behaviour during incarceration as part of the research team. They found that participants felt accepted and valued by the research team and argued that the involvement of this population was highly influential to participants' sustained engagement in the study. More recently, Haarmans et al. (2020) shared their experiences of organizing a participatory action research project in a UK prison. They noted that despite the challenges associated with involving people in prison as part of the research team, their active involvement in research can lead to new knowledge and personal transformation.

In Australia in the last few years, there have been few qualitative projects investigating the reintegration experiences of people following their release from prison (Baldry et al. 2018; Carlton and Segrave 2016; Cherney and Fitzgerald 2016; Doyle et al. 2020, 2021b; Griffiths et al. 2017; Johns 2017; Schetzer and StreetCare 2013). The academic researchers conducting these studies all noted the challenges associated with conducting this type of research, such as recruiting participants and obtaining and maintaining trust and rapport (Doyle et al. 2020; Baldry et al. 2018; Johns 2017; Carlton and Segrave 2016; Cherney and Fitzgerald 2016). These studies did not employ community researchers; the research was either conducted by academic researchers or in collaboration with service providers that work with people upon release from prison. For example, in Schetzer and StreetCare's (2013) study on the experiences of people recently released from prison into homelessness and housing crisis, interviews were conducted by members of StreetCare with support from the Homeless Persons' Legal Service. StreetCare does employ people with lived experiences of homelessness, but not prison (StreetCare 2020).

We now move to two case studies of qualitative research projects. The first, which employed a community researcher, investigated gendered barriers to women's participation in individualised disability funding schemes. The second investigated the experiences of people following their release from the adult prison in the ACT. This project did not employ a community researcher. The purpose of these narratives is not to provide the results of these studies, but rather to show the important role of community researchers in research about marginalised populations, and to highlight the need for community researchers to be employed in the criminal justice sector. The reflections focus on research design, participant recruitment, building trust and rapport with participants, and how community researchers can strengthen these aspects.

#### **4. Case Study 1: Gendered Barriers to Accessing Individualised Disability Funding Schemes**

Australia's National Disability Insurance Scheme (NDIS) is a major policy reform based on an international trend towards personalisation in social care. It aims to increase choice and control over services and supports for people under 65 years of age with permanent and severe disability, thereby boosting citizen empowerment and improving health and social outcomes (Malbon et al. 2019). However, women and girls are underrepresented in the NDIS; they make up about half the disability population overall, but the female participation rate has been approximately 37% since the inception of the scheme (NDIS 2021). Marginalisation of women with disability is a major concern in Australia and internationally (Sakellariou and Rotarou 2017; Smith 2008; UN Secretary-General 2017).

The NDIS has attributed the low female participation rate to the fact that males (particularly young males) are more heavily represented in the types of disabilities primarily funded by the scheme (NDIS 2019). However, it is increasingly recognised that disabilities such as autism can be underdiagnosed in women (Zener 2019), and several disabilities or chronic health conditions more common in women have been given insufficient attention from the disability support and medical systems (Mirin 2021; Briones-Vozmediano et al. 2018; Samulowitz et al. 2018). Other relevant issues in the exclusion or underservicing of women with disability may include complications related to caring responsibilities (particularly mothering) (Malacrida 2012), and gender socialisation to undervalue their own needs and requirements in situations where negotiation is required (Amanatullah and Tinsley 2013). The latter may lead to women being less effective self-advocates than men in schemes such as the NDIS, that put an unprecedented emphasis on individuals to navigate care systems and advocate for their own needs and rights (Yates et al. 2021). However, at the time this project was conducted there had been little research investigating women's outcomes in relation to individualised disability funding schemes, and none at all focusing on women's experiences with the NDIS.

This project was an exploratory interview-based study, funded with a seed grant from the Disability Innovation Institute, UNSW. Two of the present authors (Sophie Yates and Jen Hargrave) were part of a research team partnering with two disability organisations (Women with Disabilities Victoria and Women with Disabilities ACT) to investigate women's experiences accessing and navigating disability support in Australia, particularly the NDIS. As there had been no previously published research into gender inequality in the NDIS, the study sought to establish themes and directions for future research in the area. Inclusion criteria were women with disability over the age of 18, located in the state of Victoria or the ACT, who had applied or considered applying for the NDIS.

Women were recruited for the study through the contact lists of the two partner organisations. Jen Hargrave (third author), who also worked for Women with Disabilities Victoria, acted as a peer or community researcher, and organised and led most of the interviews, which were jointly conducted with Sophie Yates (second author), in her role as Principal Investigator. The interviews were originally planned as face-to-face encounters but were required to move online due to COVID-19 restrictions. Data were collected using two methods: semi-structured interviews using questions co-designed by the research team and partner organisations, and a visual mapping exercise known as System Effects. This exercise allowed participants to identify barriers to accessing disability support, the factors they saw as influencing those barriers, and any connections between barriers. Participants were compensated for their time with an AUD 100 online Mastercard, which the partner organisations considered to be an appropriate amount for interviews of approximately one hour. They were assured their contributions would be anonymous, and many chose their own pseudonyms for use in publications.

#### *4.1. Research Design*

Sophie: My background is in public administration and gender research, so I was new to the disability field when we started planning this project. Having internalised the doctrine of 'nothing about us without us' from other social justice research, I knew that co-design (where research is designed by both academics and partners from the target group) and the employment of a peer researcher would be crucial to the success of the project—both for my own comfort levels as someone unfamiliar with the field, and for designing and implementing a project most likely to uncover valuable insights for addressing gender inequality in the disability support system. I was lucky that I already had Jen in my networks and was able to approach her to secure her involvement and that of her organisation before we applied for the grant.

Jen: I grew up with a disability and with a mum with a disability, which put me in the position to learn firsthand about barriers to disability supports for myself and for my mum—many of which we didn't conceptually identify at the time.

I am not an academic, but I came to this community researcher role with a little formal research experience which was also helpful to understand common research processes and constraints. Without these prior experiences I may not have had the confidence, the trust in myself to step into the role. Working beside an experienced researcher was a critical enabler to the project. Sophie did all the establishment and management of the project. She got me on board fairly early in the process, prior to the ethics application, seeking my involvement and input. She was open to my questions and recommendations. In a short time, I knew I could trust her to genuinely try to understand my perspectives and implement changes appropriately.

Sophie: Jen had input into the grant application and—crucially—the ethics application and interview schedule. She explained which language was most appropriate to use and why, and challenged me about the inclusion of women with intellectual disability in our project. I had thought that it would be too difficult to obtain ethics approval for this cohort, but Jen pointed out that she had never before excluded particular disability types from interview recruitment, and was not comfortable doing so now. This made me confront my own biases—I realised she was right, and we reworked the ethics application to make our processes appropriate for women with intellectual disability (for example, developing easy read and guardian consent forms). Obtaining ethics approval was not actually as difficult as I had anticipated, which made me think about the ways that researchers' apprehension about ethics procedures may lead to the exclusion of certain participant groups. Without Jen's input, we would not have obtained insights from this important group of NDIS participants. I also found the input of partner organisation, Women with Disabilities ACT, very useful, as one of their staff members suggested the inclusion of a question that provided useful insights into how the NDIS communicated with participants.

#### *4.2. Recruitment, Trust and Rapport*

Jen: Trust around recruitment was something Sophie and I discussed. I pointed out that recruiting through community organisations is quite an ask and she was curious why. I work for a community organisation, Women with Disabilities Victoria. I explained that it can take quite a bit of time to recruit, that recruiting for a researcher can be like setting up participants on a blind date, and that if the participant does not have a good experience of the research, they may raise this with the organisation they trust rather than with the academic directly, and even seek follow up support from the organisation. Perhaps this is an argument for building trusted community members and community workers into projects to support recruitment in a deliberate and resourced way.

It is not new to say, but my personal experience was something that could establish trust with interviewees, and some even referred to it, e.g., 'I feel better knowing that (I am taking to someone who will understand my experiences).' This is not to say that as a disabled individual I can create an instant connection to every other identity or experience, but to say that it is conducive. My own experiences as a research participant, a service recipient, and as a disabled community member do give me some insight into how we can wait for someone to show they can be trusted. Sometimes, if not often, trust might not come in a one-off interview. While participants were quite open about their experiences of being a woman accessing disability supports in Australia, speaking with them over a series of interviews could have allowed them to share more of the really difficult stuff.

Something I noticed setting up and co-facilitating interviews was how my different professional experiences informed my work. For example, previous roles included phone counselling in a feminist service (which gave me a strengths-based approach with interviewees), creating Reasonable Adjustments for tertiary students with disabilities (which gave me confidence in organising disability-access supports for interviews), and systemic advocacy on gender and disability (which orientated me to the diversity and the patterns of women's individual experiences of ableism and sexism).

A prominent background experience on my mind was my experience using research in systemic advocacy, and that potential power of research was a constant personal motivator. It is perhaps reckless to admit to this, as it is precisely this point that is held as a criticism of community researchers—that they are motivated by advocacy and bias; it is not an easy criticism to counter to people who cannot understand how informing lived experience is.

Sophie: When it came to recruitment and rapport-building, Jen's involvement was invaluable. Drawing on her professional experience and lived experience as a woman with disability and an NDIS client, she was able to build rapport with participants during the recruitment and set-up process, which often involved several phone calls to explain what the project was about and how the interview would be conducted. She was sensitive to accessibility requirements, which enabled the inclusion of a wider variety of participants and helped them feel they were talking with a research team genuinely interested in their needs and experiences. I learned from her about appropriate language to use and the importance of avoiding deficit-related constructions of disability. Lastly, her professional advocacy experience and lived experience as an NDIS client led her to ask astute follow-up and probing questions that would not have occurred to me, while my gender research background enabled me to zero in on some issues that might be relevant to gender. I think we would both agree that our skills complemented each other well.

I was glad that we had built financial compensation into our research design. I didn't get the sense that it helped much with recruitment—in fact, many participants seemed surprised when I reminded them that I would send them a voucher after the interview. I got a bigger sense that people valued having their stories heard and hoped telling us about their experiences would help drive change. Some also just appreciated having a chat after being stuck inside for months due to COVID-19! However, it became clear that while some participants were financially stable, a number of them would actively benefit from an AUD 100 Mastercard to help with household expenses, so I felt pleased that we could show our gratitude for their participation with this material compensation.

We did have a few issues with recruitment in that we originally planned to interview 15 women from Victoria (one of Australia's most populous states) and 15 from the ACT (which is a much smaller jurisdiction). However, despite trying for months, we could not find enough participants from the ACT who fit our recruitment criteria. Several people agreed to be interviewed but later changed their minds or stopped responding to emails, so we decided to make up the numbers with Victorian participants. Thus, despite the involvement of a community researcher and recruitment assistance from a local community organisation, there can still be challenges with finding enough research participants from small and potentially 'over-researched' groups.

We now move to the second case study, where inclusive research practices such as community researchers were not employed.

#### **5. Case Study 2: The Experiences of People following Release from the Canberra Prison**

The ACT opened its first adult prison in 2009. The prison is the first (and only) one in Australia designed and built to operate as a 'human rights' prison (ICS 2019). It was expected to house 270 prisoners (known as detainees in the ACT); however, in recent years, the population has reached over 350 (ABS 2021). The prison houses male and female detainees at all classification levels (minimum, medium, maximum), sentenced and unsentenced (remand). Similar to other Australian jurisdictions, Aboriginal and Torres Strait Islander people are over-represented, comprising over a quarter of the prison

population. Recidivism rates in the ACT are even higher than in the rest of the country, with 78% of detainees in the AMC having been incarcerated previously (ABS 2021).

Various support services are available to people exiting the prison in Canberra to assist them in reintegrating into the community (see Bartels and Doyle 2020). One service, the Throughcare Outreach Program, is tailored to each client, commences pre-release, and offers short term support, with the assistance of local service providers (CatholicCare n.d.; Griffiths et al. 2017). There has been limited qualitative research investigating the experiences of people following their release from the prison. One recent study, the 2017 *Evaluation of the Extended Throughcare Pilot Program*, employed qualitative and quantitative methods to investigate clients' experiences with Throughcare and suggested areas of improvement (Griffiths et al. 2017). Overall findings were positive, however, challenges included confusion by clients about the Throughcare program, insufficient stable and suitable housing in the ACT, and insufficient engagement with employment services.

The purpose of the qualitative pilot project reported here was to gain an insight into the challenges people face following their release from the prison. Interviews were conducted throughout 2019. There were two conditions that participants needed to fulfil to qualify for the study: they needed to have spent at least one month in the Canberra prison and have been released in the last six months. Previous studies have shown even a short period of incarceration can have an adverse effect on reintegration into the community (Australian Law Reform Commission 2017). People serving shorter sentences are more often those who have committed multiple less serious offences and tend to cycle in and out of the justice system (Baldry et al. 2018; Borzycki 2005; Dowse et al. 2009). It was initially intended that follow up interviews would be conducted with participants around two months after the initial interview, but due to recruitment difficulties, further discussed below, each participant was only interviewed once. Most interviews lasted for around 60 min.

#### *5.1. Research Design*

Following approval from the UNSW Human Research Ethics Committee, permission from ACT Corrective Services, and support from a range of service providers in the ACT, a flyer with information on the project was placed in the offices of government and nongovernment organisations that provide support to people upon release from the prison. These service providers also provided some guidance during the design stage, such as the wording on the flyer and where the flyer should be placed in their offices. The flyer had the contact details (phone number and email) of the academic researchers and details of the financial compensation for participation. Participants were paid in AUD 20 Essentials cards, with the intention that they would receive AUD 30 for a second interview and AUD 40 for a third interview.

#### *5.2. Recruitment, Trust and Rapport*

Caroline Doyle (first author): At the time of the interviews, I was the President of Prisoners Aid ACT, a non-government organisation that provides assistance to current and former detainees and their families in the ACT. I have been involved with this organisation for the past seven years and therefore had some understanding of the challenges people can face whilst incarcerated and post-release.

I found that the majority of participants saw the flyer in the reception area of a service provider and called the listed phone number. During the initial phone contact, I spent time developing rapport with participants. For example, I would explain my involvement with Prisoners Aid ACT, my motivation for the research project, and ask them how they were adjusting to life following their release. We would agree on a time to meet and at the beginning of the interview, I made sure that I continued to develop this rapport with participants. I found that participants felt comfortable in knowing my experience with Prisoners Aid and that I wasn't just 'another researcher', but rather someone who had some knowledge and understanding of the day-to-day challenges they were facing.

Some participants did ask during the initial phone contact 'but, is this really going to change anything?' I found that participants appeared to be motivated by two factors. The first was the monetary payment, with some specifically referring to the fact that they were 'really struggling at the moment' and needed it to buy food or baby clothes. However, others mentioned that they were not interested in the monetary payment, but rather wanted to see changes for future people in the same position and that this was the first time someone had asked about their experiences. Whilst they were interested in seeing change, they were very sceptical about any change happening.

In terms of establishing trust with participants, I explained to them, in simple language, the information on the consent form—'the admin part' as I called it. I especially focused on how anything they told me would not be shared with ACT Corrective Services or any other government agencies. I also reminded them that anything they said during the interview would not affect any services they would receive from Prisoners Aid or other service providers. I found this was an important reminder as one participant explained to me how they had told confidential information to a service provider and then this information was used against them. One challenge with completing the consent form was that some participants did not yet know their mobile phone number or email address as they had been recently released and had forgotten their passwords, and only knew their prison email address information. Many also did not know what their permanent address would be, or even have stable accommodation.

In interviewing participants, I had to ensure that I was aware of my positionality. For example, given the interviews were conducted face-to-face, I thought about the clothing I needed to wear. I considered it was appropriate to wear clothing that wasn't too formal. I also used language that I considered appropriate, such as 'COs' and 'screws' when referring to custodial officers or a 'shot of ice' when referring to taking crystal methamphetamine. But I did find during interviews when I asked participants to discuss their post-release experiences, they said things like "I'm only giving you pretty much the basics but, you wouldn't know unless you've been in there". For some, they saw me as just 'another' person who wouldn't have any idea as to what it would be like to walk in their shoes.

Several participants spoke about their feelings of embarrassment when explaining their prison episode(s) to potential employers or landlords. They would tell me about how going to prison was their own fault and that they can't rely on anyone. I had to be very careful to show participants empathy and that I wasn't judging them for their past. I was prepared with the contact details of service providers that assist people post-release in the ACT.

Whilst it was initially proposed that participants could tell other people who fit the inclusion criteria about the research project, this proved to be difficult for two reasons. Some reported that they did not want to socialise with other former detainees, and some participants said that their peer group was still inside the prison. Another challenge related to the difficulty of arranging interviews with participants in 'the future'. Most participants requested to meet within the next 24 to 48 h, as they were not sure of their future plans, such as a potential job interview, a court date and time, or a housing inspection. Furthermore, on two occasions I made arrangements to meet participants, but they did not turn up at the pre-arranged time and did not answer follow-up phone calls/messages. The target had been to interview 20 participants but given these challenges only 11 participants were interviewed.

After each interview, I learnt more about the experiences and challenges people can face following their release from prison. I also gained more understanding about the lack of confidence people can have following a custodial sentence. I feel that if I had had a community researcher (such as someone who has served time in prison) working with me during the research design stage, the recruitment process, and interviews, then I would have been in a better position to not only access participants and help them feel comfortable sharing their experiences, but also to ensure that the concerns of people who had spent time in the prison were central to the project. I also feel that involving a community researcher could have offered an opportunity for someone from that community to gain research experience, build skills, and increase their sense of self-efficacy. These are all very important for people who have spent time in prison: as I consistently found through my interviews, many former detainees have very low self-confidence.

#### **6. Discussion**

The two marginalised communities explored in this paper share some commonalities. Disability is common among the prison population, with the AIHW (2019) finding that around 30% of prison entrants self-reported having a disability that affected their participation in day-to-day activities, education, or employment. Generally speaking, both people who have spent time in prison and women with disabilities have experienced disadvantage and may have distrust of institutions as a result of their experiences. Both groups have experienced barriers to their full participation in society, with people released from prison often feeling like they are not welcomed in the community. These issues, combined with the more practical barriers discussed, can make it difficult for academic researchers to access these communities and learn more about their experiences.

Comparing our experiences conducting research with marginalised communities helps to demonstrate the importance of involving people from those communities in the research process. While Caroline had knowledge of the problems facing people who have spent time in prison (both from her research experience and involvement in an organization that assists people in prison and their families), her lack of lived experience was noted by participants. She was sometimes seen as one more person who didn't understand their story, which made it more difficult for them to explain their experiences. She also experienced challenges with recruitment, not having networks that could easily reach people who had spent time in prison or the trust to support them to feel their stories would be heard and would make a difference. Conversely, Jen's status as a member of the disability community—particularly as someone who had worked in disability advocacy—meant she provided the research team with better access to community members than they would otherwise have had. She was also able to improve the research experience for participants, designing procedures that increased accessibility and using her own lived experiences and passion for helping her community to build rapport with participants. As highlighted in the literature, working in partnership with an academic researcher enabled Jen to feel like she was developing her research skills and formally contributing to the knowledge base to inform advocacy for women with disabilities, which was important to her on a personal level.

We have no counterfactual to inform what Caroline's experiences would have been like if she had partnered with a community researcher; however, we feel that some of the challenges we have discussed here would have been ameliorated by incorporating this kind of inclusive research technique. Of course, inclusive research with people who are or have been in prison does bring its own set of challenges. Some of these are similar to those identified in disability research, namely building in the time necessary for dialogue, training and explanation of concepts and vocabulary, and enabling community researchers to disagree with the academic researchers through acknowledging and mitigating power differentials (Haarmans et al. 2020). As noted above, many people who have spent time in prison also have disabilities—particularly intellectual disabilities—so that some insights regarding inclusive research in disability contexts will have relevance to criminal justice contexts. Further, Sullivan et al. (2008, p. 18) note that challenges they faced in their prison-based project relating to 'hierarchical power structures, the relative powerlessness of participants, and their general lack of research experience' are common in most participatory research contexts. Other challenges will be more unique to prison and post-prison research, such as prison regime routines (e.g., correspondence restrictions) and disruptions (e.g., prisoner transfer); the need to obtain buy-in from prison managers and other authority figures; and disruption stemming from housing, addiction, and other difficulties people often face upon

release from prison (Abbott et al. 2018; Crabtree et al. 2016; Piché et al. 2014; Sullivan et al. 2008).

This article contributes to the methodological, disability, and criminal justice literature by highlighting the value (and potential value) of community researchers in both fields. Through analysing reflections on using a community researcher in a disability research project, we argue that academic researchers will gain a deeper and more holistic understanding of the post-release experience through engaging community researchers in the criminal justice space, such as in projects seeking to understand the experiences of people who have spent time in prison. This will also provide opportunities for people with prison experience to gain skills and increase their sense of self-efficacy. As Hill et al. (2015) note, research practices that help prisoners (or former prisoners) regain a sense of autonomy and personhood are especially appropriate, given the institutional restrictions and constrained choices that people face inside prison. In employing these methods, scholars of criminal justice could build on findings from previous studies which acknowledged the importance of employing people with prison experience in mentoring others exiting prison (Graffam et al. 2019; Seppings 2015; Weaver and Lightowler 2012).

Ultimately, we argue that incorporating inclusive research methods such as community researchers into criminal justice system research will provide policymakers with useful insights to design better policies and programs for people currently in prison and upon release, and ensure they are provided with the most appropriate support to assist in their (re)integration into the community.

#### **7. Conclusions**

By acknowledging incarcerated and formerly incarcerated people in Australia as a disadvantaged group across a range of social, economic, and health outcomes, and by advocating for more inclusive methods in research with this population, we have sought in this article to bring the sensibilities of disability scholarship into conversation with the criminal justice arena. Through the use of community researchers, combined with other inclusive techniques, we urge researchers to attend to process and relationship in addition to the more common criminal justice system goals of outcomes and efficacy. Our case study comparison has provided practical insights into the benefits community researchers could offer academic researchers seeking to understand the experiences of people following their release from prison. While we do acknowledge the challenges of adopting community researchers in this space, the benefits of collaboration for both academic and community researchers, as well as the production of knowledge itself, can be significant. We also argue that support, in the form of financial compensation, training, and counselling (if required), should be provided for these community researchers. We hope that scholars of criminal justice read this article and consider the benefits of adopting community researchers in their future research projects. Doing so may facilitate new ways of thinking about long-standing issues with an ever-escalating prison population.

**Author Contributions:** Conceptualization, C.D. and S.Y.; Methodology, C.D., S.Y. and J.H.; Analysis, C.D. and S.Y.; Investigation, C.D., S.Y. and J.H.; Data Curation, C.D. and S.Y.; Writing—Original Draft Preparation, C.D., S.Y. and J.H.; Writing—Review & Editing, C.D. and S.Y.; Supervision, C.D. and S.Y.; Project Administration, C.D., S.Y. and J.H.; Funding Acquisition, C.D., S.Y. and J.H. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research was funded by UNSW Canberra (start-up grant Caroline Doyle) and the Disability Innovation Institute UNSW (seed grant Sophie Yates and Jen Hargrave).

**Informed Consent Statement:** Informed consent was obtained from all subjects involved in both studies described.

**Data Availability Statement:** Not applicable.

**Conflicts of Interest:** At the time of the research described in Case Study 2, the lead author was the President of Prisoners Aid (ACT). It was made clear to interviewees that participating in the study would not impact on the services received from this or any other service providers.

#### **Note**

<sup>1</sup> Here we should note that while the language of vulnerability is still prevalent in research on the criminal justice system, in this article we follow researchers and community activists who critique the use of 'vulnerable' as implying personal weakness and obscuring the structural bases of disadvantage (e.g., Lee 2020; Katz et al. 2020; Walker and Fox 2018). We prefer the language of marginalisation, which draws attention to the social processes that actively disadvantage people (Walker and Fox 2018).

#### **References**


Zener, Dori. 2019. Journey to diagnosis for women with autism. *Advances in Autism* 5: 2–13. [CrossRef]

## *Article* **Sex Education for Students with an Intellectual Disability: Teachers' Experiences and Perspectives**

**Iva Strnadová 1,2,\* , Julie Loblinzk 2,3 and Joanne Danker <sup>2</sup>**


**\*** Correspondence: i.strnadova@unsw.edu.au

**Abstract:** Background: Sex education assists students in the development of a healthy sexual identity and relationships. However, students with an intellectual disability tend to receive less holistic sex education as compared to students without a disability. In this inclusive study, we explored the perspectives of 10 high school teachers through interviews and focus groups on how students with an intellectual disability are informed about sexual relationships and prepared for their future life living with as much autonomy as possible, including living with a partner and becoming parents. Method: The interviews and focus groups were analysed using the inductive content analysis. Results: Data analysis revealed three themes: (a) sex education; (b) self-determination and self-advocacy skills; and (c) teachers' concerns. Conclusions: Several recommendations are discussed. These include incorporating sexuality education-related goals in an Individualised Learning Plan (ILP); teachers adopting a rights-based approach and focusing on students' self-determination, agency, and rights regarding sex education; and providing schools with necessary resources to teach sex education.

**Keywords:** students with intellectual disability; sex education; sexuality and gender identity; sexual abuse

### **1. Introduction**

According to the UN Convention on the Rights of Persons with Disabilities (United Nations 2006), people with a disability, such as adolescent students with an intellectual disability, have a right to a quality education, with the information provided in an understandable and accessible way. They also have a right to have social and sexual experiences that would contribute to life satisfaction and fulfilment (Akbas et al. 2009; United Nations 2006). Moreover, it is increasingly recognised by parents, teachers, and youths themselves that sex education is a core component of comprehensive and high-quality education, as it enables youths to develop knowledge, positive attitudes, and values to make healthy choices about their sexuality and relationships (Swango-Wilson 2011). Ultimately, a comprehensive sex education program is a universal human right for all individuals, including students with intellectual disability, and providing students with intellectual disability an accessible sex education program ensures that their rights are respected (United Nations Educational, Scientific and Cultural Organization 2018).

Despite the rights of students with intellectual disability to receive a comprehensive sex education program, they often do not, unlike students without a disability (Frank and Sandman 2019; King et al. 2018) due to stereotypes associated with people with intellectual disability. The negative stereotypes include seeing people with intellectual disability as eternal children or desexualised<sup>1</sup> beings, incapable of living adult lives and having children (Björnsdóttir et al. 2017). On the other hand, other misconceptions and negative stereotypes include seeing people with intellectual disability as hypersexual beings who have uncontrollable sexualities, and who are a potential "danger" to the community. Parents

**Citation:** Strnadová, Iva, Julie Loblinzk, and Joanne Danker. 2022. Sex Education for Students with an Intellectual Disability: Teachers' Experiences and Perspectives. *Social Sciences* 11: 302. https://doi.org/ 10.3390/socsci11070302

Academic Editors: Patricia O'Brien and Nigel Parton

Received: 25 February 2022 Accepted: 27 June 2022 Published: 12 July 2022

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

of people with intellectual disability have been known to avoid providing information about sex to their children due to the belief that doing so would encourage sexual behaviours (Frank and Sandman 2019) and potentially lead to pregnancies. This contributes to limited opportunities to make choices in their daily lives (Wissink et al. 2015). These prevailing negative stereotypes are barriers to their autonomy and self-determined behaviour in different areas of their lives (Björnsdóttir et al. 2017).

It is especially concerning that sex education provides only limited access to information for these students and is mediated by risk-averse informants (King et al. 2018). Indeed, sex education for students with intellectual disability is typically grounded in a medical and biological view, and does not include issues such as sexual pleasure and intimacy (Turner and Crane 2016; Alexander and Gomez 2017). Furthermore, sex education curricula for this population of students often does not provide information on alternative gender, sexuality, and relationships (Löfgren-Mårtenson 2012).

The pace of instruction and method of delivery are not less important than the content of sex education for students with intellectual disability. Researchers (Corona et al. 2016; McDaniels and Fleming 2016; Finlay et al. 2015) recognised that over-reliance on discussions and verbal explanations of abstract concepts is a considerable barrier in sex education programs for students with intellectual disability. As highlighted by Rowe and Wright (2017), the use of visuals (e.g., videos) considerably aids students with an intellectual disability in sexual knowledge understanding. Visual supports and modelling are evidencebased practices for this population of students (Cannella-Malone et al. 2021; Rowe and Wright 2017; Spriggs et al. 2017). For example, research (Schaafsma et al. 2015) showed that modelling and role-playing are critical in teaching protective behaviours to students with intellectual disability. Yet, a recently published scoping review (Strnadová et al. 2021b) revealed a limited use of evidence-based practices in the delivery of sex education.

The lack of attention to the development of knowledge about sexuality, rights, and relationships in these students has likely increased the risk of harm (e.g., sexual abuse) for this population (Collings et al. 2020). Due to the minimal sex education they receive (Borawska-Charko et al. 2017), students with intellectual disability may not have knowledge of appropriate and inappropriate sexual behaviours, as well as with whom they should be intimate with (Gil-Llario et al. 2020). Sexually abused students and adults with an intellectual disability tend to be passive in their sexual relations and tend to make poor relational decisions. They also can get involved in juvenile/criminal justice systems (Byrne 2018) often due to a lack of knowledge about acceptable behaviour. Furthermore, Gil-Llario et al. (2019) found that people with intellectual disability who self-reported experiencing sexual abuse had a low quality of life and ability to identify potential situations that could lead to sexual abuse. Education and knowledge about sex are important tools for students with intellectual disability to reduce sexual abuse, support positive sexual identity, and develop decision-making abilities (Collings et al. 2020). They are also recognised as selfdefence skills in enabling individuals to provide informed consent for sex (Hollomotz 2009). However, it is necessary to avoid the individual model of disability in explaining the increased risk of harm by focusing only on self-defence skills and characteristics of individuals as social factors also play a part (Hollomotz 2009). As such, risk of harm must be understood within an ecological model approach that considers the formation of these self-defence skills as resulting from the interaction between the individual's disability and the systems in the ecological framework. These systems include the individual's microsystem (i.e., immediate social network). The microsystem is in turn embedded within the exosystem (e.g., neighbourhood, employment) and the macrosystem (i.e., society and culture) (Hollomotz 2009). For instance, parents of students with intellectual disability may be more involved in supporting their child's relationship with others as compared to if their child did not have intellectual disability (microsystem). Schools may also provide differentiated sex education programs to students with intellectual disability (exosystem); policies on sex education have been developed specifically for students with intellectual disability (macrosystem) to better accommodate their needs. Hollomotz (2009) importantly

highlights that the high risk of sexual abuse of people with intellectual disability is socially created (p. 109), and that if we are truly committed to reducing the risk of sexual abuse, we need to move beyond "vulnerability" and rather aim to "eliminate conditions that create risk" (p. 110). Indeed, many services delivered to people with intellectual disability over their lifespan do not support self-determination development, with people being told what to do, where to do it, when and with whom. This limited focus on people's self-determination and self-advocacy development means that services provided for this population "feed into a high experience of sexual abuse" (Gill 2010, p. 204).

#### *1.1. Teachers' Perspectives on Sex Education for Students with Intellectual Disability*

Research studies have revealed that teachers' attitudes and skills related to sex education may prevent them from delivering all topics included in the curriculum (de Reuters et al. 2015; Hanass-Hancock et al. 2018). For example, de Reuters et al. (2015) found that despite acknowledging that sex education was an important topic for students with intellectual disability, teachers lacked confidence in delivering sex education. Furthermore, believing that these students had limited capacity to understand sex education, teachers did not provide details related to the topic. In Frank and Sandman's study (2019) teachers did not believe that sex programs are beneficial for students with disabilities. This was also one of the findings in a recently published scoping review (Strnadová et al. 2021b). Likewise, Aderemi (2013) and Rohleder et al. (2012) reported that teachers had minimal tools, resources, and skills to deliver an extensive and accessible sex education program for students with disabilities. Chappell et al. (2018) also revealed that teachers in their study experienced difficulties discussing same-sex relationships in school due to cultural barriers, disapproval from other teachers, and students' uneasiness with the topic. Therefore, to ensure that sex education is implemented as it is intended to, it is crucial to seek teachers' perspectives regarding sex education for students with an intellectual disability. This can be accomplished in different ways, including qualitative approaches (such as interviews and focus groups), as well as evaluation questionnaires.

#### *1.2. Context of the Study*

Sex education is included in the New South Wales (NSW) Education Curriculum, as part of the *Personal Development, Health, and Physical Education* (*PDHPE*). Specifically, students in Years 7–10 (Stages 4 and 5) are taught this content as part of the *Health, Wellbeing, and Relationships* and *Health, Safe, and Active Lifestyles* strands. It is important to note that students often do not receive the same education for sexuality and relationships. Some schools will deliver lessons on these topics within schools by classroom teachers and others use a range of external providers.

Students with disability, especially students with intellectual disability, often do not receive the same educational opportunities in sex education as their peers without disability. These students will often not attend the same *PDHPE* classes as their peers and will receive lessons using a blend of the *PDHPE* and *Life Skills* curriculum to teach these topics. It is important to note this is usually up to teacher discretion for how these topics are taught to students with disabilities.

In this inclusive research study, we aimed to investigate how high school students with an intellectual disability are informed about sexual relationships and prepared for their future life living with as much autonomy as possible, including living with a partner and becoming parents. The research questions guiding this study were:


#### **2. Research Methodology**

#### *2.1. Research Process*

This study was approved and supported by the university [This study was approved and supported by the Human Ethics Committee of the University of New South Wales Sydney]. This article reports on one part of the study, which focused on teachers' perspectives. The recruitment criteria were that participants in this study need to be high school teachers teaching sex education. The authors contacted mainstream schools in New South Wales to recruit the participants. The schools advertised the possible opportunity to take part in this study by personal communication with teachers. When the authors met with potential participants, they introduced the aims of the study to them and explained the participant consent form. Depending on participants' preferences, interviews or focus groups were conducted either by an academic researcher or by a dyad of researchers (one academic researcher and one co-researcher).

#### *2.2. Research Design*

This was an inclusive research study (Walmsley and Johnson 2003; Walmsley et al. 2018), in which a collaborative approach to inclusive research was used; i.e., a co-researcher with intellectual disability (J.L.) was a member of the research team and co-authored this article. This research study was co-designed by the first and second author, based on their previous joint research with parents who have an intellectual disability (Collings et al. 2020; Strnadová et al. 2019b), Strnadová et al.'s (2019a) research, and the authors' experience in supporting people with intellectual disability over the life span. All of these experiences pointed out insufficient sex education for students with an intellectual disability. The first and second author conducted most of the interviews together. Using her experiences of being a parent, the second author also provided some suggestions to teachers. An example of such an interaction can be seen below:

Maddison: "And some kids will say, even if they're lower level, 'I want to be a mummy!' That kind of thing. The maternal instinct comes out. But I think a mummy to them is having a doll. ( . . . ) They don't really have a realistic view on what parenthood is!"

The second author: "I know when my last daughter went to school, if she wanted to deal with sexuality and being a parent, she was given a doll to take home. Do you do anything like that?"

Maddison: "No, we don't. We've never come across that situation where someone seems to intent on having it, and I know there are dolls like that available where there's time to wake up, and nappy change, and be fed and cry, kind of thing. ( . . . ) But in speaking of that, I'm glad you've actually brought that up, because I do have a student who ( . . . ) wants to be a mother, and I do know she's sexually active. I'm really glad you brought that up, because that's just prompted something that mightn't be a bad idea for her, so thank you! Where do I get it from?"

The interview protocol (available upon contacting the first author) was based on (a) an extensive literature review about sex education for students with an intellectual disability and (b) the second author's experiences as a mother with an intellectual disability, a peer supporter for other people with an intellectual disability, and an employee of an organisation that advocates for people with an intellectual disability.

As highlighted by Strnadová and Walmsley (Strnadová and Walmsley 2018), there needs to be clarity about the process of co-authoring an inclusive research article, otherwise there is a risk of tokenism. In this manuscript, the first two authors (i.e., an academic researcher and a co-researcher with an intellectual disability) wrote the Findings section together, over a series of meeting days. They went through the data analysis, discussed the main arguments, and formulated sentences together, with the academic researcher typing up the text. They also created a list (using bullet point) of topics to be addressed in the Discussion section and in answering the research questions guiding this study. Then, the first and third author wrote the Introduction, Method, Discussion, and Conclusions sections.

#### *2.3. Participants*

A total of ten teachers participated in the study. This sample size is considered sufficient in qualitative inquiry as it does not seek to generalise the findings, but to understand, interpret, as well as explain a highly contextualised phenomena (Kamberelis and Dimitriadis 2005). Six teachers were from a mainstream high school and four were from a special school. Seven of them were female and the rest were male. The age of teachers ranged from 26 to 62 years, with an average age of 38.3 years. Their teaching experience ranged from 4 to 45 years, with an average of 14.9 years. Four teachers had a bachelor's degree in Education or Occupational Therapy, four teachers had a master's degree in Special and/or Inclusive Education or in Education, and two teachers had a (graduate) diploma in Special Education. Five teachers had no training or professional development in teaching sex education, four teachers had one-off or some training on this topic, and one teacher was trained in PDHPE. For more details about the participating teachers, please see Table 1. The conducted interviews and a focus group had an average length of 38:27 min (ranging from 19:24 to 54:35 min).



#### *2.4. Data Analysis*

After the interviews and/or focus groups were audio-recorded with the participants' permission and transcribed verbatim, the authors analysed the data using inductive content analysis (Elo and Kyngäs 2008), as there is a lack of knowledge about sex education for female students with an intellectual disability. There have been, however, some studies conducted with a focus on the topic of sex education for women labelled/with intellectual disability (Eastgate et al. 2011; Björnsdóttir et al. 2017).

The first author and the second author conducted open coding, and in the process of abstraction, grouped the categories into themes. All three authors discussed the derived themes, allowing for investigator triangulation and peer checking (Brantlinger et al. 2005). The authors' diverse disciplinary and lived experience backgrounds (as the authors were from the fields of special education and disability studies and one author had lived experiences of being a person with an intellectual disability) allowed for a more in-depth understanding of the data. All disagreements between the authors were resolved, which enhanced the authors' self-questioning and self-reflexivity (Archibald 2016). Pseudonyms are used in this article to protect the privacy of the participants.

#### **3. Findings**

Three main themes arose from data analysis of teachers' interviews and focus groups: (a) sex education, (b) self-determination and self-advocacy skills, and (c) teachers' concerns.

#### *3.1. Sex Education*

The sex education theme consisted of two categories: (i) sex education at school content and resources; and (ii) adjustments and teaching approaches. In terms of what students with an intellectual disability were taught in sex education, the most common topics included (in the order of frequency, from highest to lowest) female and male body parts, personal and internet safety, social media and cyberbullying, masturbation, protective behaviours, safe sex and protection, emotions, boundaries, consent, safe and unsafe behaviours, family planning, hygiene, puberty, menstruation, public and private places, relationships, homosexuality, sexual abuse and assault, saying no, appropriate touching, sexually transmitted diseases (STD), drugs and alcohol, abuse of power, and trusting people. Some teachers find it challenging to teach their students about relationships. Maddison, for example, commented: "The challenge is that they really understand the implications of a relationship. ( . . . ) That comes down to their ability to comprehend such issues." Willow described her approach to teaching students with an intellectual disability about relationships:

When we talk about relationships as well with students, we talk about different positive relationships, and what they look like, and different strategies in term of continuously having those positive strategies in place, and then negative relationships and what they look like, and what to do in those situations. . . . we're looking at how that effects the students' mental health, or if we talk about a relationship that's really negative and you need support besides friends and family, or teachers, what other services are available and who you could go to to seek help for yourself or a friend. ( . . . ) We recently even talked about things like abuse in terms of sexual abuse and what that looks like...

However, one of the teachers mentioned that she does not teach her students with an intellectual disability about domestic violence and similar topics, because it would be "too disturbing" for them. Some teachers also mentioned topics that are not taught about in their schools, which mostly included (i) homosexuality/any identity other than heterosexuality, and (ii) masturbation. This might be both due to the school and parents' preferences. For example, Maddison shared an example of a parental reaction to making masturbation a part of sex education at schools: "Oh, my child doesn't do that! He's not like that!' Well, all children are like that, because we are all human, and we do."

Some teachers also discussed their preferences in regard to delivering sex education in mixed classes as opposed to girls-only groups. There was a considerable diversity in opinions. Maddison, for example, preferred mixed classes:

At the moment, we've been teaching them together. There was a time when we had a boys' group and a girls' group, and I think we've sort of moved on from that, for a couple of reasons. One, because we sort of felt that girls should know what boys are feeling, and boys should know what girls are feeling.

Teachers also discussed the adjustments they make for students with an intellectual disability, and about teaching approaches they use. Many teachers highlighted the importance of using visuals (e.g., videos, YouTube clips, mind maps), role plays, discussions, and content adjustment (e.g., breaking things down, paraphrase). Some highlighted the importance of age-appropriate learning and formative assessments in lieu of formal assessments.

I don't do a lot of formal assessments. I find that with our formal assessments, not only do they tend to increase anxiety in our students, but they tend to just be a test of memory, a lot of the time, and our kids really struggle with their working memory, so I do a lot of what we call "formative assessments", so they're in-class assessment tasks . . . ( . . . ) I still have to do formal assessments because our students are on the mainstream curriculum, but I do one formal assessment every two terms, instead of doing one or two a term ( . . . ) . . . most of my teaching is basically discussion-based, doing KWL charts, looking at things like—I do exit slips quite a bit, so I might do three stars and a wish, what are the two things we learned about, what's one thing you'd like to learn about? (Willow)

Four teachers from a special school for students with moderate and severe levels of intellectual disability highlighted the importance of incorporating safe and unsafe words in teachers' vocabulary.

#### *3.2. Self-Determination and Self-Advocacy Skills*

Self-determination and self-advocacy skills theme consisted of two categories: (i) Individualised Learning Plan (ILP) meetings, and (ii) speaking up. Teachers confirmed that each student has one or two ILP meetings per year. Only three teachers stated that students with an intellectual disability attend their ILP meetings. Furthermore, only two teachers mentioned that parents receive a copy of an ILP. None of them would say that students receive their copy. In terms of sex education, four teachers confirmed that ILP meetings also include sexuality-related issues.

Three teachers highlighted the importance of self-advocacy, autonomy, and speaking up for oneself for students with an intellectual disability. Willow emphasised why teaching self-advocacy needs to be a part of education at school as early as possible:

I try and encourage a lot of autonomy and self-advocacy, because I think when it comes, we need to be able to prepare our kids to talk about what they need, even from Year 7, because once they get to Year 12 they'll have all those skills memorised, so it'll be something that will just be automatic to them, whereas if we try and teach that in the older years, they haven't had as much practice with it, so I find that it won't be as automatic.

Two teachers described how they support their students in learning about their disability, knowing their rights and supports, and talking to others about their disability. One teacher highlighted that some students cannot speak up and protect themselves.

#### *3.3. Teachers' Concerns*

Experiences with students and parents was a substantial theme, which consisted of the following categories: (i) abuse and violence, (ii) masturbation, (iii) collaboration with parents, (iv) inappropriate behaviours, and (v) students and sexuality.

#### 3.3.1. Abuse and Violence

Six teachers had experiences with their students with an intellectual disability being sexually abused, which was often committed by a relative or a family friend. For example, Willow shared:

One was with a dad, so the student was sort of in a relationship with the dad, and I had to—we had to do a child wellbeing referral, and go to FACS [Family and Community Services] and have that investigation underway, so not only did I have to support her but I had to support her friends who had disclosed to me as well. And we'd spoken about, you know, what they can do to support their friend. And then also, I think because the girl didn't understand why we were making such a big deal of it. Didn't understand that there was that abuse of power and that that shouldn't be happening to her.

Seeing her students being sexually abused led Maddison to develop an awareness program:

. . . two of our students were sexually abused, and both of the notifications the children made to me, so I was involved with DoCS [Department of Community Services, now referred to as FACS], . . . and from that, I wanted to find out what can I do to—number one, for counselling for these students, and number two, for resources. I sort of made my own program at the time based on—the Circles program was part of it, but I modified that for the students. . . . the most important thing we do is about protective behaviours. Rather than about sex, how to protect yourself. We think that's a priority. The kids can protect themselves.

Teachers from a special school for students with complex needs (i.e., severe intellectual disability and autism) developed their own sex education program. This was due to a lack of resources accessible for students with high support needs:

And I guess it took us about two and a half years. It runs from early learning—so, the four and five-year-olds, all the way to secondary, and it's sort of a skillsbased, tiered program, so you start in Early Learning, really basic skills, like identification of who you are, and labelling body parts, and all that sort of stuff, and it builds as you get older, depending on students' skill levels. . . . we just sort of split it into three areas, which was Emotions, so that involves not, like, only identifying emotions, but self-regulating, when you're experiencing intense emotions, and My Body, so that's about identification and Rules—touching, not touching, exposing yourself, etcetera. And also menstruation was in My Body as well, so we did preparing girls for their periods, and protective behaviours, which is a program we run called Circles, which is like your circles of people in your life. So, me, my family, my friends, and what different rules, I guess, and how you can interact with your family versus strangers. Trying to teach boundaries, and trying to teach consent, which is really hard to teach.

Diverse demands on teachers working in special schools were evident in their focus on students with high support needs. This was also acknowledged by some of the teachers from mainstream schools. For example, Willow commented:

I worked at an SSP [special school] last year as part of my practicum. I think I would really struggle in unpacking the curriculum for students of that comprehension level, . . . ( . . . ) . . . because I was fairly new to non-verbal modes of communication, it was really difficult to gauge the level of understanding and knowledge. I think I'm a bit more equipped to do that now in terms of understanding different forms of communication, and how you utilise those, but I think that would be my biggest struggle: understanding how to unpack that even further, and making sure the communication stuff is then catered for as well.

One teacher also described how the sexual abuse situation of one of her Year 9 female students challenged her in terms of believing whether what the student was saying is true: "It was hard because I didn't know whether she was telling me the truth. Because of her intellectual disability, I didn't know, whether it was truly what was happening. Then she was describing the act, and things like that, so then it was a duty of care responsibility as a teacher that I had to report it."

One teacher also questioned school processes when sexual abuse of a student is found. She was convinced that teachers of that student need to be aware of the sexual abuse:

Sometimes confidentiality's an issue as well. ( . . . ) They say that if you know of a child being sexually abused, you're not to pass that on to your colleagues. I really disagree with that, to some extent. I certainly don't think it should be in the weekly bulletin, but I do think that if a child is going to your class and you don't know the child's being abused, I think you need to know so you know what to look out for. So I think there needs to be some passing on of information. Not gossip, not staffroom talk, but some professional dialogue . . .

Some teachers also mentioned incidents of domestic violence in families of their students and cyberbullying. Willow suggested:

I have had another kid who had disclosed to me that somebody on Facebook had met up with them. He was about thirty years old, she was thirteen. She went to his house and they'd had sex, and when we spoke about it she said to me—and she came from a different—it was a very, very low socioeconomic—a lot of drug and alcohol abuse within the family as well—so, came from an environment where there wasn't a lot of supervision and wasn't a lot of care in terms of where the child was, because when we called the next day and said, "Your child's not at school, and her friend's told us she met up with someone." "Oh, do you think I should call the police?" "Yes!" "I thought I had to wait until at least 48 h." "No, you don't!" So, eventually, it got to the point where I had to phone the police myself because the mum still hadn't by about one o'clock. She was found at about three, but denied to the detectives that anything had happened, and spoke to me about "Well, he loves me, and he cares for me." I think it was seeking that emotional affection that she wasn't getting at home. And I referred her to the counsellor. Did disclose what had been said, but obviously, it wasn't taken further by the police because she kept denying to them, even though they had my statement, and then I just said to her, "I really hope for your sake that you're right," because nothing else will work with her. I just said, "I really hope you're right, but, sweetheart, someone else of this age only wants one thing from someone your age, and really hope I'm wrong". And two weeks later she came and she was in hysterics and shattered and . . . I think that was a big learning experience for her. Not a very positive one . . .

Another teacher commented on a critical lack of available counselling for students who have been abused:

. . . our special kids, fall through the cracks, which is something that needs to be addressed. ( . . . ) certainly by organisations that do counselling. ( . . . ) Our kids have a massive proportion of kids that are being abused. So when I ring, don't tell me you're sorry you can't help me!

#### 3.3.2. Masturbation

Five teachers talked about masturbation being an issue for their students. The most common problems were students masturbating in public places, and students injuring themselves while trying to masturbate.

Many teachers also spoke of parents refusing to allow their child to learn about masturbation is sex education, as demonstrated in the following teacher's experience: "We've had 'absolutely no'. Speaking to the parents, that this inability to masturbate is becoming actually a huge issue in terms of aggression, in terms of self-regulation, so we've

had several conversations over several, several years, maybe four years now, and they're just flat-out refusing."

William admitted that masturbation is a topic he avoids in sex education: "I've never really taught masturbation and that sort of stuff. Unless I've got a kid in my class that's doing it in public, I think that's . . . you seem to know what you're doing. I'll leave it to you."

#### 3.3.3. Collaboration with Parents

In teachers' experiences, some parents found it difficult to talk about sexuality with their children, which might be also grounded in their religion/culture. Teachers felt that it is important not only to prepare students for sex education but also their parents, who have to give consent on topics that will be covered within sex education at school.

One of the teachers from the special school shared their approach to collaborating with parents: " . . . make it very friendly, parent-friendly, and that's why we're starting really low in early learning, that they don't even feel it's part of their sexual education. Through primary school I can see, especially for the parents who have kids who develop very quickly, they often see the need for us to address issues very early, but then secondary, it's really an eye-opener, and I can imagine college, too, when things start happening, behaviours changing because of the hormones. Emotional regulation and everything else that happens with their body. So, the parents are definitely going through the stages . . . "

#### 3.3.4. Inappropriate Behaviours

Two teachers expressed concern that some students with an intellectual disability can be more violent when learning about sex education. One of the teachers shared the dilemma of how to teach sex education curriculum, while not encouraging inappropriate behaviour.

Teachers also shared their experiences with an outcome of students having limited sex education: "And it becomes a real issue for over 18's who are now adults in the community. We've had several incidents of clients grabbing women's breasts on the train, and then getting charges pressed against them. So for us, we can see the backflow of all those issues if they're not dealt with earlier."

#### 3.3.5. Students and Sex Education

In terms of students' sexuality, one teacher talked about having her students with an intellectual disability in relationships and how important it is to support them and educate them. William even stated that students with an intellectual disability take sex education more seriously than students without disability: "I've taught the same thing in mainstream before, and like any kid, they're generally pretty reluctant and they laugh for a while, but . . . I actually think, to be honest, the kids with intellectual disability tend to take it more seriously than the kids in mainstream . . . "

Samuel was concerned that some students cannot always disclose their sexual identity to their parents: "I know . . . one child here who may be gay, ( . . . ) but . . . their parent would be horrified. ( . . . ) So the boy is going to go through a hard time."

When it comes to sex education for students with a more severe intellectual disability, teachers found it challenging to teach sex education to non-verbal students. They shared some key rules they have around teaching proper vocabulary to students: "... the core vocabulary is really important: because the language that they learn when they are five is the language that they'll use for their entire life. So if you can just bite the bullet and use language that they're going to need to use for the next fifty years, even from a young age, I think that's better than going, 'Let's call it your "willy" now and then in five years you have to learn a new name.' Four teachers from a special school also talked about practicalities related to puberty, and how female students with an intellectual disability refuse to wear bras, which might draw unwanted attention from others.

#### **4. Discussion**

There are some positive, and some problematic findings arising from this study. It is certainly reassuring that students with an intellectual disability learn about sex education at schools. In the second author's personal experience, this was not the case in her schooling years. This study set out to answer two research questions. These are answered below, in light of research literature.

#### *4.1. What Are Teachers' Experiences with and Perceptions of Sex Education for Students with an Intellectual Disability?*

Some participants pointed out topics that are sometimes not covered in sex education, especially (i) sexual and gender identities other than heterosexual identity, and (ii) masturbation. The finding that teachers only cover the topic of heterosexual identity aligns with the literature on sex education of students with an intellectual disability. For instance, Nelson et al. (2020) reported that teachers in their study adopted the heteronormative perspective and assumed that their students with an intellectual disability were heterosexual. In terms of the second often-omitted topic in sex education, it is likely that masturbation was not included as a topic in sex education as it goes against religious beliefs. This is concerning, as students with an intellectual disability have been known to engage in excessive masturbation, and in inappropriate environments, which increases their exposure to physical and verbal violence (Girgin-Büyükbayraktar et al. 2017). This finding is consistent with Strnadová et al.'s (2021a) study with 11 girls with an intellectual disability who also shared that diverse gender identities and masturbation were omitted topics in their sex education at school. While masturbation certainly should not be a taboo in sex education, it equally should not be perceived and presented to students with intellectual disability as "a substitute for sexual intimacy to supposedly reduce behavioural issues" while reinforcing existing misconceptions that people with intellectual disability "should not engage in sexual intercourse" (Gill 2012, p. 487). It is also important to recognise in sex education that while knowledge regarding masturbation is important, it is equally important to acknowledge that some people identify as asexual (Gill 2012).

Another alarming finding was that more than half of the participating teachers experienced their students with an intellectual disability being sexually abused by somebody close to them. This is consistent with the literature about abuse, where it was reported that as compared to students without intellectual disability, those with intellectual disability were more likely to be sexually coerced, abused, and assaulted (Grove et al. 2018). Likewise, Platt et al. (2017) found that women in comparison with men experienced a greater likelihood of being abused by their partners. Research also shows that domestic violence and other forms of gender-based and sexual violence happen to girls and women with intellectual disability twice as likely as to the mainstream population (Feldman et al. 2012). Teachers also discussed the occurrences of domestic violence and the lack of counselling available to students.

Teachers used a variety of teaching practices and approaches; however, they complained about a lack of accessible resources for this population. They pointed out that there is a lack of available counselling at schools for students with an intellectual disability who have been abused and/or neglected. This is similar to the findings from the study conducted by Chappell et al. (2018), where teachers emphasised that there were limited intervention and resources targeted at assisting students with intellectual disability who had experienced sexual violence or who were perpetrators themselves. There is also a dearth of resources to teach sex education to students who have more considerable support needs, such as students with moderate and severe intellectual disability.

#### *4.2. What Are the Challenges in Developing Autonomy Concerning Sex and Relationship Knowledge and Skills in Students with an Intellectual Disability?*

Students with an intellectual disability were mostly not included in Individualised Learning Plan (ILP) meetings, and many of them were not consulted about the topics they want to be included in their sex education. Yet, the "collaborative curriculum planning process" is often referred to in the relevant syllabuses in Australia, in connection to developing an appropriate Individualised Educational Plan for students with a disability.

According to teachers, students with an intellectual disability did not receive a copy of their ILP. This is consistent with the experiences of girls with an intellectual disability, as none of 11 participating girls in study Strnadová et al.'s (2021a) received a copy of the ILP. Furthermore, they did not understand the purpose of ILP meetings, bearing in mind that only three of them took part in their ILP meetings. This is concerning, as to develop self-determination skills, students with an intellectual disability need to actively take part in planning for their learning and in developing their ILP. They also need to have an accessible copy of their ILP, so that they can revise what their goals are and whether they are achieving them. This enables students to feel a sense of ownership over the goals set and would be more likely to pursue them (Chandroo et al. 2018). More importantly, students with an intellectual disability could develop goals related to sex education, which can be included in these ILP meetings. This is imperative, as Frawley and Wilson (2016) found that youths with an intellectual disability did not find the factual and biological information they received from their parents on sex education useful. Contrarily, they needed opportunities to ask questions and explore sexuality-related topics. As such, youths with intellectual disability should be actively involved in their ILP meetings in discussing how they would like information on sex education to be delivered and what topics on sexuality they would like to discuss and learn about.

This finding regarding ILP meetings is also consistent with the fact that only three teachers highlighted the importance of students' self-determination, and only two had strategies in place to teach their students about their disability, rights, and supports. A possible reason for teachers' lack of focus on students' self-determination, agency, and rights regarding sex education could be that teachers tend to view students with an intellectual disability as oversexed, innocent, and having limited ability in exercising their sexual agency and understanding sexually appropriate behaviour (Chappell et al. 2018). As such, teachers may adopt a protective approach towards students with a disability, which impinges on their autonomy (Nelson et al. 2020).

#### *4.3. Recommendations for Policy and Practice*

Numerous recommendations arise from this study. Firstly, sex education must cover topics such as diverse gender and sexuality identities. Indeed, teachers implementing sex education need continuous support to reflect upon and change their potential perceptions and assumptions that all students with an intellectual disability are heterosexual. Students with an intellectual disability also need to learn about masturbation. Instead of taking a protective approach towards students with these disabilities, a rights-based approach could be adopted.

Secondly, the participants' common experience of students with an intellectual disability being sexually abused or subjected to domestic violence is alarming. Teachers must be provided with resources on ways to address and support students with an intellectual disability who have experienced sexual abuse. They also need to be aware of how to report cases of abuse to relevant authorities due to the high number of students with an intellectual disability experiencing abuse (Chappell et al. 2018).

Thirdly, teachers' narratives about the way they approach sex education were predominantly risk-oriented. This is hardly surprising, given their common experiences with their students with an intellectual disability being abused. However, as highlighted by the World Health Organisation's definition on sexual health, "sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence." (https://www.who.int/health-topics/sexual-health#tab=tab\_2, accessed on 6 November 2020). The European Standards of the World Health Organisation further state that sexual education should in the first place be about pleasure (https://www.bzga-whocc.de/en/home/, accessed on 6 November 2020).

Fourthly, every student, regardless of the level of intellectual disability, can benefit from sex education, if adjustments are made to the delivery of the content, and students' strengths and needs are accounted for (Barnard-Brak et al. 2014). Sex education needs to be thought of as a skill that must be included in an ILP (Barnard-Brak et al. 2014).

Lastly, there is a need to increase teachers' awareness of accessible resources that can be used to teach sex education to students with intellectual disability. In Australia, where this study took place, there are accessible materials available. For example, the resources developed by the *Family Planning NSW* also include a resource pack on safe sex for people with intellectual disability on masturbation for boys and girls, etc. (https://www.fpnsw.org. au/factsheets/individuals/disability, accessed on 6 November 2020). SECCA developed accessible resources relevant to learning about relationships, sexuality, and sexual health (https://secca.org.au, accessed on 6 November 2020). Another excellent example of existing resources is the *Sexual Lives and Respectful Relationships* website developed by Patsie Frawley and her team (https://www.slrr.com.au. Accessed on 6 November 2020). However, many teachers who took part in this study were not aware of these resources.

Furthermore, there is still a dearth of resources accessible to students with profound intellectual and multiple disabilities. A consultative group consisting of teachers, parents, health educators, and the students themselves could be established to determine the resources that would be needed to teach sex education, as well as to ensure that the resources are accessible to students with intellectual disability. Students must also be consulted on the topics that they would like to be addressed in sex education, their preference for the delivery of sex education to be in single or mixed sex groups, as well as the gender of the person delivering the program. Furthermore, additional counsellors should be provided to all schools to support students who may have experienced sexual abuse.

#### *4.4. Recommendations for Research*

Future research could explore the impact of teachers' beliefs and stereotypes about students with intellectual disability on their implementation and delivery of sex education to these students.

#### *4.5. Limitations*

A limitation of this study is that it only explores the experiences of teachers in New South Wales, Sydney, Australia. Teachers in other states and countries may have different experiences.

**Author Contributions:** Conceptualization, I.S. and J.L.; methodology, I.S. and J.L.; formal analysis, I.S., J.L. and J.D.; investigation, I.S. and J.L.; writing—original draft preparation, I.S., J.L. and J.D.; writing—review and editing, I.S. and J.D.; project administration, I.S.; funding acquisition, I.S. and J.L. All authors have read and agreed to the published version of the manuscript.

**Funding:** This work was supported by the UNSW Sydney, School of Education's Research Grant *Adolescent girls with intellectual disabilities: Education that matters*.

**Institutional Review Board Statement:** The study was conducted in accordance with the Declaration of Helsinki, and approved by the Institutional Human Ethics Committee of the University of New South Wales (ethics approval number HC180194 and date of approval 16 May 2018).

**Informed Consent Statement:** Informed consent was obtained from all teachers involved in the study.

**Data Availability Statement:** Data are not publicly available.

**Conflicts of Interest:** The authors declare no conflict of interest.

#### **Note**

<sup>1</sup> We use the term "desexualised" in alignment with Kim's (2011) definition of desexualisation as a process "of creating distance between sexuality and people with disabilities through the fear of disability reproduction and contamination" (pp. 482–83). We further acknowledge that some people with (intellectual) disability are "asexual", which is a term with a distinctly different meaning. Indeed, asexuality belongs on the sexual continuum and "presents distinct identities and embodiments" (p. 490).

#### **References**


Girgin-Büyükbayraktar, Çagla, Rukiye Konuk-Er, and Sahin Kesici. 2017. According to the opinions of teachers of individuals with intellectual disabilities: What are sexual problems of students with special education needs? How should sexual education be provided for them? *Journal of Education and Practice* 8: 107–15.

Grove, Linsey, Dianne Morrison-Beedy, Russel Kirby, and Janet Hess. 2018. The birds, bees, and special needs: Making evidence-based sex education accessible for adolescents with intellectual disabilities. *Sexuality and Disability* 36: 313–29. [CrossRef]

