Experiences of Young Australians with Intellectual and/or Psychosocial Disabilities Sharing Disability-Related Information to Gain Workplace Adjustments

Abstract

Sharing disability-related information with an employer to gain workplace adjustments is a complex process for young people with intellectual and/or psychosocial disabilities. We examined the disclosure experiences of young Australians with intellectual and psychosocial disabilities, their subsequent access to workplace adjustments, and their employment outcomes. Using narrative inquiry, we analysed qualitative data collected from 24 interviews with participants with an intellectual (n = 10) and psychosocial disability (n = 14) between 18 and 25 years old recruited as part of an Australian Government-funded Youth Employment Study. Four main narratives emerged among the participants responses. Positions ranged from their having no control over disclosure experiences to a high level of control resulting in access to workplace adjustments. These positions were impingent on their knowledge of rights and adjustments, previous experiences, workplace context, and self-advocacy capacity. Our study provides unique insights into the employment experiences of young people with intellectual and psychosocial disabilities. The findings may inform initiatives aimed at building their capabilities for disclosure to gain workplace adjustments that can improve their employment outcomes in turn.

1. Introduction

More than 4.4 million (18%) Australians live with disabilities, including just over 1 million (4.6%) with psychosocial disabilities and 450,000 (2%) with intellectual disabilities [1]. In this paper, we conceptualize psychosocial disability as a disability associated with a person’s lived experience of mental illness. It is influenced by the interaction of a person’s psychological condition and the socio-cultural context in which they interact. Not all people with mental illness experience disabilities. Rather, psychosocial disability is experienced by a group of people whose mental illness may be more significant or disabling. Intellectual disability is conceptualized as the outcome of a person’s limitations with conceptual, social, and practical skills (e.g., language, social, and self-care skills) and the context in which they interact. The level of disability a person may experience will depend not only on their psychological or intellectual condition but also on the barriers and enablers they experience when trying to live and participate in their communities [1]. Australians with psychosocial disabilities and intellectual disabilities are significantly less likely to be employed (25.7% and 32%, respectively) compared to Australians with disabilities more broadly (53%) and Australians without disabilities (84%) [1]. In this paper, we use person-first terminology (i.e., people with disabilities) as this is the preferred terminology of our co-researchers with disabilities. We do, however, understand and respect diverse preferences in terminology, including terms that align with diverse experiences, identities, and conceptualizations of disability (e.g., social models of disability and identity-first terminology often preference the term disabled person).

Most young people with intellectual and/or psychosocial disabilities want permanent paid employment [2,3,4]. Meaningful, secure, and fair paying work can provide health, financial, and social participation benefits [2,5,6,7]. Employment can also help people managing psychosocial disabilities to maintain their mental health or to aid their personal recovery [8]. Yet, many young people with intellectual and/or psychosocial disabilities experience systemic barriers to finding and gaining paid work. Key barriers include insufficient work experience during school years and inadequate support to gain required vocational skills (e.g., technical skills, resume writing, interview skills, inter-personal communication) and to address non-vocational barriers (e.g., unmet need for mental health supports, financial insecurity) [2,3,4,5,6,7,8].

Attitudinal barriers such as disability-related discrimination are particularly prevalent [3,4,5,9,10]. In turn, navigating whether, when, and how to share disability-related information (i.e., disclosure) to current or prospective employers is a particularly complex process for many young people with disabilities [9,10]. Disclosure is necessary to help young people gain workplace adjustments, i.e., any changes to a work environment, practice, or procedure that helps people maximise their productivity and workplace participation in turn [8,10,11]. Workplace adjustments may be environmental (e.g., office modifications, adjustable desks, or light fittings); technological (e.g., screen reading and voice to text software); flexible (e.g., earlier work hours, working from home); procedural (e.g., adapting work instructions or performance requirements); administrative (e.g., training co-workers); or provision of additional on-the-job supports such as mentors or support workers [3,9].

Research indicates that gaining workplace adjustments is the foremost motivator for employees to share disability-related information with an employer [2,9,10,11,12,13]. Studies have also found that disclosure can help to build trust between employers and employees as they problem-solve together to optimise work performance [8]. Recent research also provides evidence of improved job satisfaction when workers receive required workplace adjustments [14]. Other benefits include providing a valid explanation for potentially inconsistent employment history and the opportunity to enlighten employers or colleagues about disability-specific workplace issues [10,15].

These potential—albeit not guaranteed—benefits are gauged against the potential risks that disclosing may negatively impact on young people’s opportunities to gain and maintain work. As such, the process of evaluating the benefits and risks of disclosure often prompts much deliberation and anxiety for jobseekers and current employees [10,11]. Disability-related workplace stigma and discrimination, and limited employer and co-worker awareness of mental health and disability and the benefits of promoting accessible and accommodating workplaces for all workers can all undermine disclosure processes and outcomes [11,12,13,14,15]. Workers often fear disclosing their disability will result in lowered expectations, disrespect, and ostracization from colleagues; and employers decreasing their job responsibilities, denying them promotion, or terminating their employment [11,15]. Unsurprisingly, some forgo their rightful workplace adjustments out of fear of these potential discriminatory practices [13,16]. Furthermore, adverse disclosure experiences, or negative experiences in the labour market more broadly, can entrench avoidance behaviours such as withholding information about disability or withdrawing from the labour market altogether [10,11,15,16].

The visibility of a person’s disability may also influence whether they share or withhold information. A person with a less visible disability has the option of concealing whereas a person with an obvious disability does not [17,18]. The visibility of a person’s disability may also influence the timing in which they share information. For example, von Schrader et al. (2014) found that participants with ‘very apparent disabilities’ were more likely to discuss their disability earlier than participants with less visible disabilities. Research has further revealed that a person’s self-esteem and self-advocacy skills can influence whether they share their disability-related information [18,19]. As in other countries, so too can employer and employee knowledge on their legal rights and responsibilities [14,20].

Like in several contexts, Australian employers do have the right to ask all potential and current employees legitimate and necessary questions about factors which may make it difficult for them to undertake the inherent requirements of the job safely. Employees are only obliged to tell employers about their health conditions or disability if it is likely to affect performance, the requirements of the job, or safety. If workers do choose to share disability-relevant information, they do not have to share specific medical or personal information. Any information shared by an employee can only be used for the purpose for which it was provided, such as to enable workplace adjustments. Once an employer has been informed, they must implement appropriate responses, including providing specific training or work-related adjustments [20].

Australian studies about the experiences of young people sharing disability-related information to gain workplace adjustments are scarce. Our paper responds to this gap with the aim of responding to the research question, ‘What are the experiences of young Australians with intellectual and/or psychosocial disabilities in sharing disability-relevant information and requesting workplace adjustments?’ We do so by presenting a narrative analysis drawing on qualitative data collected as part of our Australian Government-funded research project known as the Youth Employment Study (YES) outlined in the Method section below.

2. Materials and Methods

Implemented between 2020 and 2022, the YES project was a co-designed mixed methods study which aimed to examine the employment experiences of young Australians. The YES project explored career development, employment programme support, job seeking experiences, and employment outcomes. The study also examined the relationships between employment, health, and well-being [21,22]. The quantitative component of the study involved approximately 350 young Australians with and without disabilities aged 15–24 years participating in three online YES surveys between 2020 and 2022, findings of which are reported elsewhere [21,22]. The qualitative component had a more specific focus on young people with disabilities. It involved 24 interviews with young people with intellectual and/or psychosocial disabilities who are both less likely to be represented in quantitative research and experience poorer outcomes within Australia’s labour market [22]. Ethics approval for the qualitative interviews was obtained from the University of Melbourne’s Human Research Ethics Committee (ID 2056559.1) with all members of the research team adhering to the Committee’s principles for implementing ethical research.

A preliminary thematic analysis of the qualitative interview data emphasised participants’ often challenging experiences with disclosing a disability to an employer and accessing workplace adjustments [21,22]. This important finding warranted further analysis, prompting the narrative analysis presented in this paper. Narrative inquiry is a research methodology that aims to understand how social factors may influence a person’s actions and ongoing experiences [23]. It emphasises how narrators (e.g., interview participants) tell and understand their lived experiences to help researchers gain a deeper understanding of a particular phenomenon [23,24].

2.1. Positioning of the Research Team

Our research team included four university-employed researchers without disabilities specialising in disability and employment research. They included the Principal Investigator, the qualitative research lead, a Research Assistant, and the Project Manager. One is a carer of a young person with an intellectual disability, and another is an experienced disability support worker. In line with inclusive research best practice, five young people with diverse disabilities (who were also engaged as members of the YES project’s Youth Advisory group), were employed as co-researchers to co-design and support the implementation of the YES project’s qualitative component. The four university researchers provided the co-researchers with research training and support throughout the project. The co-researchers’ roles included co-designing the methods and research materials (e.g., interview guides), reviewing drafts of the ethics application, and supporting the data collection and analysis [21]. Their lived experiences of disability contributed significantly to the design of the research, interpretation of the data, and the development of emerging narratives reported below [25]. While engaged throughout the project, the co-researchers’ contributions varied due to their competing employment and study commitments, fluctuating health concerns, and their preferred research activities.

2.2. Recruitment of Interview Participants

We aimed to recruit participants with an intellectual or psychosocial disability between 18 and 25 years old. Potential participants could include individuals who had never worked, previously worked but were not working at the time of the study, or they were working at the time. Potential participants were identified and recruited in two ways. First, we contacted participants who expressed their interest in participating in an interview about their employment experiences through a prior online survey conducted as part of the broader YES project [21,22]. Staff from partner organisations who worked with young people with intellectual and psychosocial disabilities were the second recruitment source. These staff provided potential participants with a project flyer and Easy Read Plain Language Statement about the YES project’s semi-structured interviews. Prospective participants then gave these staff permission to relay their contact details to the YES’ research team. The Research Assistant then contacted the participants to discuss the research, complete the capacity to consent process and gain informed consent, and arranged a convenient time for the interview with consenting participants.

2.3. Data Collection

The 24 semi-structured interviews were conducted via phone or video-conference call between January and July 2021. Face-to-face interviews were not possible due to the COVID-19 pandemic’s health and safety restrictions in place during this period. Using the semi-structured interview guide, participants were asked about their experiences with education and training, employment support services, gaining and maintaining work, and the employment-related support they received. We also asked them about their health and well-being in relation to their employment. All participants could nominate a support person to be present at the interview, and one participant took this opportunity [21]. All interviews were led by the Research Assistant (K.D.R.) with the co-researchers co-facilitating nine of the interviews. Averaging 50 min each, the interviews ranged from 26 to 76 min. All interviews were audio-recorded and later transcribed verbatim by the Research Assistant. Prior to analysis, we anonymised and codified the participants’ data with identifiers (e.g., PWID-1 [Participant with Intellectual Disability #1]). These identifiers were also used to report the qualitative data presented in the findings.

2.4. Data Analysis

Subsequent to the preliminary thematic analysis reported elsewhere [21,22], the research team instigated a narrative analysis specifically examining disclosure experiences. While two members of the research team (A.D., K.D.R.) led the analysis, regular discussions were held with the co-researchers and wider research team to examine emerging findings and enhance their veracity. Throughout the analysis, dialogue with co-researchers included reflections of their own lived experiences, which enabled deeper engagement with the data and an opportunity to further interrogate our evolving interpretations of the findings.

The narrative analysis began with A.D. and K.D.R. undertaking multiple re-readings of each interview transcript. Initial coding was completed deductively to specifically identify instances where participants described job-seeking experiences, disclosure of disability-related information with potential and current employers, any examples of workplace adjustments requested or received, and employment outcomes. This process was conducted both independently (A.D., K.D.R.) and via reflective discussion, whereby the researchers examined similarities in the coding and discussed any divergent findings until consensus was established.

We then examined the nature of disclosure examples to identify factors (e.g., knowledge of rights) influencing whether, how, and by whom disclosure to a workplace was instigated and how much control participants appeared to have over these processes. We further explored how these factors and experiences influenced current access to workplace adjustments and employment outcomes.

Comparisons were then made to identify whether disclosure experiences differed across the cohort, yielding a framework of four distinct narrative positions about the participants’ disclosure experiences. Key factors within this framework included participants knowledge of rights, responsibilities, and potential workplace adjustments; their previous employment and sharing of disability-related information experiences; their employment situations; and their differing self-advocacy capabilities. Narrative positions emerged along a spectrum from limited to effective control of the disclosure process with each participant mapped to one of the four narratives. Each narrative is presented in the Results section below. Please refer to

Table 1. Key factors examined to map participants across the four narrative positions.

Key Factors	Narrative Positions
	1: Limited Control over Disclosure	2: Reluctance to Disclose	3: Increasing Control over Disclosure with Mixed Outcomes	4: Strong Control over Disclosure and Workplace Adjustments
Knowledge, experience, and skills in relation to workplace rights and responsibilities and adjustments	Limited	Some	Moderate	Strong
Employment programme support	Extensive	Mixed	Mixed	Minimal
Employment experiences and organisational context	Generally within supported settings	Mixed, generally within competitive employment	Generally within competitive employment	Generally within competitive employment
Self-disclosure experiences including within current role (if working)	None	Limited, unknown	Mostly	Consistently
Willingness to disclose	Difficult to determine willingness	Mostly remained reluctant to disclose	Often enacted decision-making processes to determine whether they felt safe/unsafe or relevant/not relevant to disclose	Consistently disclosed to employers
Access to adjustments	Mixed	Limited to some	Mixed	Generally received accommodations in current role
Work outcomes	Generally positive	More likely to be negative	Mixed	Mostly positive
Broader self-advocacy	Limited	Limited	Acquiring self-advocacy skills and experience	Strong, supporting others to develop these skills

for a summary of the key factors and the four narrative positions.

3. Results

3.1. Participant Demographics

Of the 24 participants, 10 identified with intellectual disability and 14 identified with psychosocial disability. Eleven identified as male, 9 as female, and 5 as gender diverse. More than half of the cohort had completed secondary school. Most participants with an intellectual disability completed their schooling within specialist education settings. Eleven participants had post-school qualifications. Nine were currently or about to commence studying. Fourteen participants were in paid open employment and nine were unemployed when they were interviewed. One participant was employed at an Australian Disability Enterprise (non-competitive), seven were looking for work, and eight worked as volunteers (See

Table 2. Interview participant demographics.

		Participants with Intellectual Disability	Participants with Psychosocial Disability
		n = 10	n = 14
Gender	Male	8	3
	Female	2	7
	Gender diverse	0	5
State of residence	Victoria	8	8
	Other states	2	5
Location of residence	Metropolitan	9	11
	Regional	2	1
Secondary school setting	Specialist setting	6	1
	Mainstream	1	6
	Mix of specialist setting and mainstream *	3	0
	Other/not specified **	0	7
Highest level of schooling	<Year 10 to Year 11	2	5
	Year 12 completion	8	9
Post-school qualifications	No qualifications	6	7
	Apprenticeship or Certificate (III or IV)	4	3
	Associate degree or diploma	0	1
	University degree	0	3
Study status	Currently studying	1	6
	About to commence	2	0
Paid employment	Open employment/social enterprise	6	8
	Non-open employment/Australian Disability Enterprise	1	0
Not in labour force	Unemployed, previously worked	1	6
	Unemployed, not previously worked	2	0
Job-seeking status	Looking for work	2	5
	Not looking for work	2	6
Volunteer status	Current volunteer work	5	3
	Previous volunteer work	2	4
	Never volunteered	3	7

Note: * At some point in their secondary schooling the participant switched from one type of school to the other. ** Vocational Education and Training (VET), Victorian Certificate of Applied Learning (VCAL) or alternative school, or not specified.

).

3.2. Narratives

3.2.1. Narrative One: Limited Control over Disclosure

Six of the participants with an intellectual disability and two with psychosocial disability reported their limited control over their disclosure experience. None of these participants described instances of disclosing their disability to an employer. Instead, these participants presumed their employer was already aware of their disability because their specialist school or disability employment support service had secured their employment. Moreover, their employer had specifically catered employment to people with disabilities. When asked whether they spoke with their manager about their disability, PWID-4 answered,

‘He kind of knew. Because I remember at the work experience, he knew which school I was from. … But he definitely totally understands that’. Several participants credited these school-based programmes and employment support services for building their confidence and skills to access work experience and training opportunities and to negotiate with employers to secure and maintain their employment. They also expected that programme staff would advocate on their behalf to share relevant information with their employers. ‘They’ll be a support person’, PWID-2 explained, ‘Mainly the person who talks to my boss… and handles pretty much all the business stuff and all the conversations too’.

Most participants were satisfied with their employment outcomes and felt included in their workplace that offered informed support to employees with disabilities. ‘They give people with disability work’, PWID-8 said, ‘I ask, and they say, “Yeah, sure. I’ll help you”. Simple as that, right? We’re all pretty equal at that place’.

Most participants were unaware of what information their employment support worker had shared with their employer or what adjustments had been negotiated. It was also unclear if these participants had received opportunities to build their own capacity to self-identify or request their workplace adjustments. Some, however, appeared reluctant to assume these responsibilities and were grateful someone else had advocated on their behalf. As PWPSD-14 [Participant with Psychosocial Disability #14] reasoned: ‘I didn’t disclose it. I’m pretty sure the work provider did because I don’t know. … I’m not 100% sure because I didn’t really feel confident bringing up all the s***’.

Some participants mentioned difficulties when the person holding the information about their disability left the organisation. Losing the required support they received caused them problems. As PWPSD-9 relayed,

‘I got that [job] through an organisation that was at my school. The manager at the time, he was aware, but then he left. … I don’t think anyone else knew… Because no one else [in the workplace] was aware of the program… everything changed after that.’

Some participants or their employers requested the assistance of employment support services to help participants maintain employment. Yet, access to support was often inconsistent or inadequate, which resulted in mixed employment outcomes. For example, PWID-10 was fired after their employment support service provider failed to provide sufficient guidance to the individual and their employer.

3.2.2. Narrative Two: Reluctance to Disclose

Six participants, of whom most have psychosocial disabilities, reported a reluctance to disclose their disability to their employer. Only two participants had shared their disability-related information with previous employers. Their reasons for disclosing included a justification for their absenteeism or their fluctuating mental health impacting their capacity to work. Neither participant received required workplace adjustments nor support after disclosing their disability. PWPSD-3 described their employer’s dismissive attitude:

‘Every discussion that I brought up with my team leader about how my mental health was affecting my role, it was kind of brushed aside and I was told that I just had to suck it up and work like everyone else.’

Some participants appeared reluctant to disclose, which may have been influenced by their insufficient knowledge of their rights and responsibilities related to disclosure and workplace adjustments. Even when other participants articulated such knowledge, this did not translate into their decision to disclose. Reasons for their hesitancy included previous personal or witnessed negative disclosure experiences and their fear that disclosure would result in adverse outcomes. PWPSD-3′s response typified this sentiment:

‘I had the idea that my first job was going to be bad, that most people’s first jobs are bad and that I shouldn’t expect too much out of [their employer] to help me in any way. So I think that’s why I felt really hesitant to disclose that kind of stuff.’

Several participants also doubted their employers’ disability awareness and their capacity to support their needs or to provide workplace adjustments. As PWPSD-3 elaborated further:

‘It’s not something that I felt like I could really talk about with my team leader because I wasn’t sure if they knew about it, or if by finding out about my diagnosis they’d think that I wasn’t suited for the role. At that time my priority was to not get fired from the job because I really needed it for financial reasons. … I kind of get the feeling that at a job like that there isn’t really room for people like me.’

Employed participants with a psychosocial disability generally felt their current employer was not aware of their disability because their disability was invisible. Some participants chose to conceal their disability to avoid stigmatisation and to gain employment. Some participants were also optimistic that they would never have to share their disability status whereas others feared that their fluctuating or deteriorating mental health may force them to disclose. PWPSD-2 expressed this fear unique to people with invisible disabilities:

‘Because with mental health and fibromyalgia, which isn’t always accepted as a real condition, there comes a lot of shame. … It’s invisible. So people can’t see that I have anything that would need any adjustments to my workplace… I feel like if I were obviously disabled my answers would be really different … People look at me and don’t think of me as disabled. …If it gets worse, I feel like I’ll have to. But at the moment I’m quite chill and because we’re working from home I’m not expending as much energy.’

Some participants mentioned that their non-disclosure and/or the lack of workplace adjustments had compromised their ability to perform their job tasks. Their predicament compounded their stress at work and at home, which worsened their mental health and contributed to poorer employment outcomes. As PWPSD-3 described, they felt the lack of support and ‘inflexibility with work hours… took a big toll on my mental health’.

3.2.3. Narrative Three: Exercising Increasing Control over Disclosure with Mixed Success

Almost a third of the participants reported control over their disclosure experience, which resulted in mixed outcomes. The majority had a psychosocial disability (n = 5) and two had an intellectual disability. All had disclosed their disability to an employer and most demonstrated knowledge of their workplace rights and responsibilities. Some participants attributed their knowledge and confidence to their school or employment support service providers.

Feeling reasonably empowered, these participants decided when and how they shared their disability-related information when finding or gaining work. PWPSD-1, for example, had declined an employment support service provider’s offer to advocate on their behalf: ‘I said, “No, I think I should be good handling it on my own.” I’m pretty independent with it. … I know in Australia you can disclose without getting [fired], like, the disability law’.

Most participants did, however, feel that sharing information with potential employers in their job application or during a job interview would jeopardise their prospects of employment. ‘I don’t mention my mental health at all in terms of the application process unless it is specifically asked of me,’ PWPSD-7 reasoned. Others, like PWID-1, cited previous experiences of discrimination during the recruitment process as a reason for not disclosing. ‘I said, “I have a disability,’ and then I heard them quietly say to themselves”, they said. “Oh, he can’t work here because every person with a disability has poor hygiene issues”. … I remember just sitting there crying’.

Some participants were hesitant to disclose when offered a job. Their decision to withhold depended on how secure they felt after gauging the employers’ approachability and potential to provide adjustments. They were most likely to disclose after a few weeks of starting work. PWPSD-5′s response is explanatory: ‘At the start I didn’t (disclose) because I just wanted the job. I didn’t want to jeopardize that in anyway’.

Some participants further observed that their employer did not create opportunities for them to share their disability-related information or provide workplace adjustments. In PWPSD-5′s case, their employer did not ask them about challenges they were experiencing until they reached a crisis point. ‘I didn’t disclose my mental health issues until it became very severe’, they explained. ‘It wasn’t noticed until that point’.

While confident with sharing their disability-related information to a trusted employer, few of these participants could identify or request appropriate workplace adjustments. In addition, they reported that their employers had varying degrees of knowledge of disabilities and workplace adjustments. Some participants therefore missed out on the adjustments that may have benefitted them. PWPSD-1 was one such participant:

‘I did have a bad experience at the last job because I disclosed too late. My boss wasn’t really [a] good manager. She read the note that I gave her and she’s like, “Okay”, and just didn’t understand it. … there was no follow up… It’s like, ‘I don’t know how to deal with this’.’

Some participants reported that their employers were more likely to understand adjustments for physical disabilities than cognitive disabilities. ‘Physical health is a lot easier to accommodate’, PWPSD-6 believed. ‘I honestly didn’t feel like there was a lot that the manager could do to help with depression and anxiety’. By contrast, disability-competent employers were more accommodating. As PWPSD-6 elaborated, ‘They were just like, ‘Yeah, ok. Let’s try putting you on for four hours instead of the usual 8 to 9 hours. … So they were pretty flexible with me, trying to get it so that it worked out for me’.’

3.2.4. Narrative Four: Strong Control over Disclosure and Receiving Workplace Adjustments

Only 3 of the 24 participants reported strong control over their disclosure experience, which resulted in receiving workplace adjustments. Each of these participants experienced psychosocial disabilities and worked for mental health or disability advocacy organisations that prioritised this lived experience in recruitment. ‘It’s just been so affirming to be in a disability [advocacy] organization,’ PWPSD-10 explained. ‘I could disclose in my interview what my disabilities were. They viewed that as an asset and not a hindrance’. The three participants further credited these organisations as continuing to foster their self-advocacy capabilities. Despite this, participants recognised that many young people with disabilities continue to experience workplace discrimination. PWPSD-11 described their experience:

‘I wouldn’t disclose during a job interview… if they were to be discriminating against you for whatever reason… you can’t prove that. … they might not even call you back… If it’s at that later stage… then you have a bit more rights. You could bring it up… with the Victorian Equal Opportunity Commission… after an interview, but there’s no way you’d win.’

PWPSD-12 further lamented the ineffectiveness of the Australian Disability Discrimination Act that ‘doesn’t protect you right then and there. That protects you if you then take something to the Fair Work Commission or the Disability Discrimination Commissioner. When your job is on the line, that doesn’t seem like a good option.’

The three participants all described instances demonstrating knowledge of workplace adjustments and negotiating for these adjustments with employers. Such adjustments included determining flexible approaches to where when, and how their work was best undertaken. These arrangements also proved beneficial for their mental health and employment outcomes. As PWPSD-10 explained,

‘If I need to work on a weekend, which often I do based on my own kind of health needs… I would just email my manager beforehand… I was allowed to keep working while I was in hospital which was incredible… I get to do work that felt meaningful and also meant I could pay my rent and those kinds of things was a very good feeling.’

The three participants highlighted that their disability confident organisations made requesting and accessing workplace adjustments possible. Moreover, these organisations—often disability representative or advocacy organisations—appeared to employ staff with disabilities who held leadership positions and chaired job interview panels. Disability awareness and knowing how best to implement adjustments were thus embedded within organisational policies and processes. That said, PWPSD-10 was concerned that too few workplaces are accommodating—which significantly limits options for young people with disabilities to work outside of the disability sector.

‘What generally worries me is that—What if this is the only safe, inclusive and accessible workplace I get to work in?… That I have to either go to an inaccessible workplace or that I can’t work? That’s very scary.’

The three participants therefore emphasised the importance of all workplaces providing a safe and inclusive environment conducive to conversations about how employers can best enable employees to do their job. PWPSD-10 believed that receiving workplace adjustments maximised the employee’s productivity:

‘It’s also the responsibility of workplaces to be like, ‘How can we support you?… Tell us about who you are and what makes you who you are and why?’… So, this is really nuanced and beautiful two-way street of conversation.’

The participants’ determination to develop the self-advocacy skills and disclosure capabilities of other young people with disabilities was Narrative Four’s distinctive feature. PWPSD-11’s employment included delivering peer-to-peer support and endorsed this valuable feature for helping others and themselves. ‘I would feel more comfortable now, especially working in the work that I do’, they explained. ‘I’ve learnt the skills of how to help others with that and so by that I know how to help myself.’

In addition, PWPSD-10 emphasised the role of employment support services and programmes in supporting people with disabilities with intersecting identities. ‘Because understanding both parts of my identity is really important to finding a workplace that’s suitable for me’, they reasoned ‘So, ensuring there are queer people, people of colour, disabled people in environments helping to support us.’

Furthermore, Narrative Four stressed the importance of diverse and inclusive workplaces to improve the employment outcomes of all people with disabilities. ‘Having that lived experience there is important’, PWPSD-11 explained.

‘If businesses knew that then I think they’d be hiring a lot more people with disability… what else they can bring to the table, new perspectives, new ideas, different skills and talents. … you’re missing out on one fifth of the population if you’re not being accessible.’

4. Discussion

This study investigated the disclosure experiences of young Australians with intellectual and/or psychosocial disabilities. The four narrative positions revealed commonalities and differences among the participants’ capabilities to disclose and receive workplace adjustments.

As reported in Narrative One, many participants with intellectual disabilities expected that their school and employment support workers had notified their employers about their disability. Their employers also catered employment to people with intellectual disabilities, which meant they felt they did not need to disclose. While several of these participants attributed these programmes to their gaining confidence and vocational skills, they often lacked knowledge of their rights and more importantly the skills to disclose to secure workplace adjustments. Experienced-based learning that builds communication skills for engaging with employers may build their capacity. This education may include mock job interviews to practice disclosure conversations and negotiate required accommodations [9].

Recent research indicates that some Australian organisations include disability disclosure awareness in their career development programmes [26]. One programme helps young people to identify and document a ‘blueprint’ of their strengths and workplace adjustment requirements to share with potential employers [27].

Disability-specific career development and/or transition programmes play an important role in developing self-determinism and self-advocacy skills of young people with disabilities [9,28,29]. Research has emphasised eight key skills that increase their employment potential: choice-making; decision-making; problem solving; goal setting and attainment; self-advocacy; self-efficacy; self-awareness and understanding; and self-observation, evaluation, and reinforcement [30]. Research has also highlighted the benefit of involving trusted peers, family, teachers, and professionals to build their employment capacity [9,31].

Our findings about the participant’s reluctance to disclose in Narrative Two is consistent with previous studies [10,11,15]. The ‘invisible’ nature of psychosocial disabilities, fear of discrimination, and doubting their potential or current employer’s competence each contributed to their reluctance. Many participants may have benefited from using disclosure decision-aids to make informed disclosure decisions, which can reduce their anxiety and stress in turn [8,19,32,33].

Decision aids may be catered to the employee, employment specialists, or employers [19]. The Conceal Or Reveal decision aid, for example, was designed to support employees disclosing a psychosocial disability by outlining the possible consequences of disclosure and non-disclosure as well as when to disclose and to whom [32,33]. Waghorn and Spowart’s Plan for Managing Personal Information (PMPI) provides employment support specialists with guidelines to assist job seekers with a psychosocial disability. Job seekers may then decide whether they or their employment support person enacts their disclosure preferences [8,34]. McGahey et al.’s Australian study found participants who completed the PMPI were 4.9 times more likely to secure employment within six weeks than participants who had not [8].

Lindsay et al. (2020) [19] designed and evaluated a decision aid and simulation exercises for employers considering hiring staff with disabilities. The study highlighted the importance of employers gaining disability confidence to create a disability-friendly workplace culture, which can encourage disability disclosure among their employees.

Findings in Narrative Three reported the participants’ greater confidence disclosing when they had secured employment than during the recruitment process. This is consistent with previous research [8,9,15]. However, they did not always receive their requested adjustments, in part due to their employer’s limited knowledge about psychosocial disabilities. This finding is consistent with research about employees and employers lacking knowledge of the available adjustments that can improve job performance and ability to maintain work [9].

Disability aware and confident employers create a supportive workplace culture that is conducive to workers sharing their disability-related information [9,11,28]. Most evident in Narrative Four, participants working for disability advocacy organisations could disclose their disability without fear of discrimination and received adjustments that enabled them to maximise their work potential. Their employers’ confidence and competence extended to employees with intersecting identities (e.g., LGBTIQ+), which is promising [35]. However, their employment opportunities should not be restricted to the disability sector as participants stated. Improving mainstream employer confidence and inclusive practices is therefore a key focus of Australian disability advocacy organisations and academics who collaborate with small- and medium-sized employers [36].

Altogether, the four narratives illustrated the challenges and opportunities related to disclosing an intellectual or psychosocial disability to an employer. The findings also elaborated on the importance of disability awareness specific to knowledge of their workplace rights and skills unique to navigating a complex and stressful situation. Collaborations between people with disabilities and their families, schools, employment services, and employers. The findings indicate that to improve understanding of disability and the rights and responsibilities of all parties to ensure that young people gain confidence in their skills to gain workplace adjustments.

4.1. Strengths and Limitations

Involving young people with disabilities in the research team was the YES project’s key strength. Their contribution and direction at every stage of the research ensured the lived experiences of young people with disabilities and their perspectives enabled us to dynamically capture, explore, understand, and preference participants’ experiences in a much more engaged and thorough way. As individuals, all research team members (with and without disability) benefitted from the two-way capacity building that occurred through the co-designed process. Researchers without disabilities gained valuable insights into the lived experiences of young people with disabilities, while the young co-researchers with disabilities gained theoretical and practical skills in conducting research. Overall, the research team gained valuable insights and skills when implementing co-designed research.

The perspectives of employment support workers and employers about disability disclosure and workplace adjustments would have added more insights to the YES project. While beyond the current study’s scope, the research team intend to prioritise future research with these stakeholders.

This study was conducted during the COVID-19 pandemic’s social and travel restrictions. While administering interviews via telephone and Zoom enabled rich discussion, it is possible we inadvertently excluded participants who prefer in-person conversation.

4.2. Recommendations for Future Research and Practice

Future research and practice would benefit from developing and evaluating strategies to build the capacity of diverse young people with disabilities to enhance their knowledge of their employment rights and responsibilities, alongside skills regarding sharing disability-related information and requesting required workplace adjustments. This needs to be met with further research and evidence on policy and practices that lead to employers’ ‘disability confidence’ to hire, provide adjustments to, and retain employees with disabilities. As with the YES project, this research should be conducted in collaboration with young people with disabilities.

5. Conclusions

Young people with intellectual and/or psychosocial disabilities experience significant barriers to finding and maintaining employment. Disability-aware and inclusive workplaces are crucial to improving their employment outcomes, which results in their financial, health, and social benefits. Developing their capacity to share disability-related information to access workplace adjustments is equally important. Future research into the effectiveness of disclosure decision-aids among Australian employees with a disability, their support workers, and employers will be insightful. Future research may also shed light on navigating the greater challenges in open employment compared with workplaces catered to employees with disabilities. Finally, the positive contribution of young people with disabilities in the design and implementation of this research will hopefully encourage other researchers to adopt co-design approaches.