The findings presented here are drawn from the responses of 27 young people including 15 female and 12 male participants aged 19 to 33 years (table 1). Pseudonyms have been used. All identified as having intellectual disability described as mild or moderate. Most participants were from NSW, which is reflective of the location of the researchers during the Covid-19 pandemic and the travel restrictions imposed between Australian states during 2020-21. Twenty participants lived with their parents, two lived with extended family, two lived in group homes, two on their own with support, while one reported having no stable accommodation. Most participants described having received support at school, but the extent of support varied between participants.
Supplementary materials: Table 1: Participant characteristics - about here
Themes - Searching for meaning and purpose
The analysis of the rich data produced with the young participants in this study generated an overarching theme, and three key themes with three sub-themes as illustrated in figure 1. The overarching theme ‘searching for meaning and purpose’ was a sentiment expressed by most participants about their lives, but especially by those who had left school several years ago. There was a sense that most participants had not reached a purposeful destination but were caught in a perpetual state of transition with a disability service or moving between services. Few felt that they were receiving the right support to help them achieve major goals or outcomes of importance to them. The key themes and sub-themes developed from the data are presented below with selected extracts from interviews to highlight the experiences young people shared with us.
Supplementary materials: Figure 1: Searching for meaning and purpose themes - about here
Theme 1 - Transition planning – policy versus reality
The realities of planning and information
The experiences of transition planning before leaving school varied significantly between participants with inconsistencies in both processes and timing, and in terms of the opportunities and support they received. Few had experienced choice, autonomy or control in planning post-school goals and services. Provision of information and support linked to the young person’s goals was often lacking.
Many times, young people reflected on their experiences, both positive and negative, being linked to the skills and approach of a particular individual staff member, rather than a consistent offering based on best practice and systemic procedures. For example, one young person reflected that her maths teacher “was amazing...she just – she knows how to speak to people who were different” and that she had spoken to her about “what I might do after school”.
Yes. It’s – I can't remember. It's something – like, even, like, the principal, like, I was, like, very close and everything and, um, they asked what I wanted to do, I honestly don’t know, whatever comes up I guess… I wanted to be a hairdresser or a masseuse; maybe something around there, yeah (Amelia).
Few participants recalled having received concrete advice on how to plan or progress towards their goals. Kirsty, for example, felt that support with planning and preparation towards leaving school had been focused solely on one opportunity for work experience while ignoring other important life skills. She explained that she had been restricted in the goals that the school staff had been willing to help her work towards. When asked whether specific supports or training were offered such as living skills Kirsty replied “no, they were pretty shit”. When asked whether she had other goals than art or other things that she wanted to pursue, Kirsty explained that at the time in school she had sensed from educators that they saw her capacity as limited to a specific area, so few alternative opportunities were offered:
No, because during high school they kept telling me that I'd be no good at anything else. So that’s the way my mind kind of worked at the time, and now I'm like, no, I want to do more (Kirsty)
A few participants remembered having work experience placements arranged by school staff that they had really enjoyed and learned from. However, some opportunities for work experience that were identified or provided during early senior high school years, were not continued when educators organising these would leave the school. This experience had disrupted the preparation for transitioning for Paul, who spoke of a lack of care for the students:
We had a careers advisor which – which helped us to find out what we want to do… well, basically … the careers advisor said, "I give up on you bunch; I’m out of here… So in Year 11/Year 12 the career advisor was basically just, off they went (Paul).
Opportunities offered to young people were typically in hospitality or retail, but the choices were limited and often these experiences did not necessarily match their goals and interests. Haylee described it as “just working in a café”. Others had no opportunity at all during high school for work experience.
Lack of choice and control
As well as not being afforded advice and forward planning, some of the young people gave examples of times where choices were made for them at school based on assumptions about what they wanted to do in the future. Paul stated that having teachers assuming his preferences was just plain wrong, and their assumptions were incorrect anyway:
…because there was this one time where the head teacher of the mainstream…, got there and said, "Okay, I'll choose your elective for what you want to do in Year 11," and I was like, excusez-moi, that's not even – that's not even correctomondo, thank you very much (Paul).
For Paul, the override by school staff of his autonomy would lead to conflicts when he asserted his right to choose for himself:
…you know, that's why I ended up actually having the argument with the head, um, with the head teacher of the thing and it ended up being really quite unpleasant, um, you know, because I realised that something was not right, but no one was giving me any heads up or anything (Paul).
Hayden agreed with Paul’s sentiments and summed up the problem of lack of autonomy: “I don't want people that are, like, like, you know, just making choices for me”.
Young people also reflected on the limited choice of services in their area, or the fact that the available services did not offer programs that suited their interests and priorities, as explained by Amelia:
it’s been really tricky and hard…in fact…because last year I was like – we went around, um, all different types, um, like, companies and it was, like, really hard to find which one, um, um, I'm interested in, like [names of three different service organisations] and everything… (Amelia).
Finding paid employment is really hard
For several participants, life goals often remained undefined and/or unfulfilled after leaving school. Most of our participants talked about how they wanted to find a job – a paid job, to enable independence. Some of them had been engaged with disability services for more than eight years, completed one or more courses at TAFE[i][ii] (technical college), gained some work experience and contributed as volunteers, but very few had opportunities for employment, let alone ongoing paid employment. The only two participants who had ongoing paid jobs, were both working with family members or in their family’s business. While several participants in one focus group (James, Susan, David, Shyla, and Paul) were completing TAFE courses online, facilitated by their current service provider, they explained that they had spent years hoping to gain job training and meaningful employment through employment agencies. Some were yet to work out what options they had, and commonly felt that they had little support from post-school services to refine and achieve their goals.
Several of these young people had switched between service providers in the hope of finding support or programs toward employment and training, but promised services were often not delivered. According to Paul, even with several completed TAFE courses, the experience of looking for a job was frustrating and like waiting to win the lottery: “So you're just waiting here for that lottery ticket to draw your name out”. Paul eloquently described his experience with an employment service that he felt did little to support his search for employment:
So they're basically, you know, um, not very well, um, structured. All they were doing with me was saying, “What do you want to do? What do you want to do?” instead of going, okay, let's go through the process of, you know, getting you a job, getting you rent, getting you out there for work experience and that … they were a total nightmare (Paul).
In their narratives, it was evident that our participants felt let down by a system that was hard to navigate. Despite several years of completing different training courses and volunteer roles, they felt confined to being clients of disability service providers. Paul who had been fighting for both NDIS funding and job support services, said “I just don’t feel like that these people actually give a damn”. James, who had been with the same employment agency for five years without getting a paid job, agreed, and stated that he also felt disillusioned with the efforts of the agency, “I’m hoping that I can one day move along and get a job”. Shyla had had a similar experience. Not only did it take a long time to get NDIS funding but the first service provider “tried to like take us for money” without providing a service so “that's when we got into [another service provider] because we were trying to find, like – like, something like a job training thing to do”.
Despite engaging with service agencies and organisations that were supposed to assist with job training and employment, individual participants reached out to the researchers on several occasions during interviews and focus groups with questions on how to get a job and asked the team for help in finding jobs. For example, Jack said:
Um, so in a job, right, can you teach me how to get a real job? Because I wonder if anyone can help me get a job… I trust my mum, but I’m mainly trusting myself or someone else I know. It’s really hard (Jack).
Hayden had explored the things he would need to do or study to give himself a better chance at finding a meaningful job, but expressed feeling trapped in a life with disability services and switching between providers:
Because I feel that, sometimes, um, you know, want to — that I want to do some more in life than just, be a disability person. And I want to be…I want to
be out there. Know what I mean? (Hayden)
Theme 2 - Experiences of freedom and loss
Escape and “freedom to do other things”
We asked the participants about the best and the hardest thing they experienced when leaving school. Several participants had found school life challenging both academically and socially, and for some there was a strong sense of freedom and relief from leaving school. The best parts about leaving school focused on “having the freedom to do other things” (Elena) and getting away from a restrictive environment where they were told what to do by “annoying teachers” (Olivia). Olivia also enjoyed that there was “no more homework”, while Sarah expressed a much stronger sense of relief in leaving school “getting away from a toxic environment that stifles any creativity or individuality”. Shyla was relieved to “leave the negativity behind … because I didn't like talking to people there because I was pretty shy, and I still am now”.
Feeling lost in the “big world”
There were many challenges connected with leaving school and young people expressed as a sense of feeling a bit lost or as Jack put it, feeling “scared and nervous” in a new world. Sofia said that while she enjoyed not having the pressures she had felt at school in terms of “presenting a certain way”, since leaving school she had struggled with isolation and “not knowing how to function without a schedule”. Mia stated that she found “most things” hard after school, while several other participants expressed a sense of loss of the structure and support system that school had provided in their lives. Mia found life hard with “no routine”, and Elena stated that “finding her way in the big world” had been difficult, a sentiment that was shared by other participants. Some said that they were sad to be “saying goodbye to a few of the teachers” (Olivia) who had really helped them, and now missed the structured programs where they had friends, felt supported and/or had experienced success. Noah said, “I miss not having dance and drama classes anymore”, and Hayden explained how important performing arts was for him and that the hardest thing was to leave the hip hop ensemble he had been part of for three years:
…leaving the group three terms in, you know, and not being there for the final, you know, term four the…you know, for the group, just – it was really difficult for me and – and I–I cried most of the time, like, and I just couldn't think about, like, the hip hop ensemble without getting sad and freaked out… (Hayden).
Grace had difficulty identifying the best experiences about leaving school and stated that “most things” about leaving school were hard, and that she had struggled to define her goals. Sarah stated, “I had no idea what I wanted to do with my life” and explained that post-school life was “really hard” for her because she had no parental guidance or support from her “mentally ill mother”. In contrast, Charlotte listed all the things she wanted to do, but was yet to achieve: “finding a good job. Living independently. Meeting new friends. Having enough money to live independently while on a benefit”.
Loss of social connections
Leaving school had for many of the participants meant the painful loss of friendships. For Sofia the “isolation” after leaving school had been hard, and others talked about feeling sad about leaving their friends, and how they were missing these friends in their everyday lives.
Actually, um, you know, like, um, like, when I left school, I left a good mate of mine…Um, he and I used to hang out together all the time. Um, ah, he and I were in the same class together when I was in Year 12 surprisingly, um, and leaving him was a bit tough as well so, yeah (Hayden).
Most participants explained that they had found maintaining connections with these friends difficult. After unsuccessfully trying to contact several different school friends, Nick said it felt like “they don’t care about me anymore”. Hayden explained feeling conflicted and insecure about trying to maintain connections with friends, because some of these connections had been challenging in school as well.
Um, but also it was –it was hard to fit in at school, to be perfectly honest, and – and when it came to, like, graduating school I – I kind of felt on the outs because - because – because I didn’t really get to hang out with other people much because they were graduating and they probably wouldn't want to, you know, yeah, be – be friends with me, be with me any longer so, yeah (Hayden).
Finding and establishing new friendships were described as equally challenging and very few had friendships outside of the disability service they were attending. Christina also described being isolated from friends: “I haven’t had anyone in the past year or two” and “it’s really like hard to start something [new friendships].”
Theme 3 - Navigating adult roles and relationships
Importance of parental agency and advocacy in accessing funds and services
Parents were commonly mentioned by participants as being important in transition planning, and in advocating for them in accessing funding and services, but equally were seen as rule setters for young people who were living with them several years after leaving school. Accessing disability services beyond school and obtaining sufficient funding through the NDIS was a frustrating process for participants who relied on their capacity to advocate for themselves or having support from a family member or other support person who was able to advocate on their behalf and “speak the right language”. Paul referred to navigating the NDIS as being like “just trying to bark correctly”. He lamented that to get funding to support goals and needs, you had to meet strict criteria, be assertive and use the correct terminology for funded items:
You have to like, you know, bark for it beforehand. So, basically, you will be barking, you know, constantly at them to try and get something out of them...NDIA are basically just saying to all the participants…You want in; bark [like a dog] (Paul).
Like others, Paul had found processes of accessing NDIS funds something that he needed help with. He described how help form his mother had been essential in navigating the NDIS planning meeting and dealing with what he perceived as hostile reluctance from the planner to meet his requests. His reflection suggested that there was a need to be assertive in arguing for funding to access services: “Mum … she's the one – she's the brains behind, you know, applying for NDIA, NDIS getting on board with some of the things (Paul).
Parent protection, rules and demands
Many of the participants in this study still lived with their parents, including individuals who had been out of school for a decade. While some participants were content with living with their parents, others spoke of tense or difficult relationships with their parents around decision making. Christina was upset with her mother for denying her the opportunity to go on a camp organised by the disability service for the clients. She emphatically stated, “I hate my mum”, indicating that this choice should be her own as an adult. Paul explained how he frequently argued with his parents to assert his opinions:
We have a discussion with me and my parents…we always end up in an argument. So me and my parents eventually after about – I don't know – about six or seven years of arguing and whatnot and fighting constantly, seeing who can get the last word, because I always stand up for myself constantly because that's, you know, when we're always fighting I always stand up for myself all the time (Paul).
Some participants found living with parents restricting at times or felt that their parents had expectations that were difficult to achieve. Shyla explained that she found living with her parents stressful, because they were pushing her to find work: “Sometimes I would like to move somewhere else…my parents keep telling me to find jobs and it's kind of stressing me out. It's been stressing me out for like a year now”.
Jack explained that his mother disagreed with his choice of career and the people he wanted to spend time with. He talked about his keen interest in making YouTube movies and posting them online. This was something that he spent a lot of time doing, and wanted to pursue as a job, but his mother did not agree with this ambition as a real job: “mum noticed that YouTube is not a job, and I watch YouTube clips …YouTube is a job job and you get paid. You get paid – it pays ...”.
Jack had also wanted to catch up with some friends from school but explained that his mother did not approve of them: “I got friends from school I want to connect to…it’s pretty hard because mum doesn’t want me to go outside and hang out with my old friends”.
Longing for intimate relationships and a family of their own
Many participants described desires for intimate relationships, finding a partner, and having families of their own, feeling desperately left behind when siblings achieved these milestones. Two of the older participants talked with longing about having a family to find that real sense of purpose in life. For example, for Nick the goal of having a family was a “real thing”, that he told us was wanted by “lots of people”. He described a sense of being left behind by siblings and cousins experiencing these milestones: “they're all getting married one by one, by one … And starting a family”.
Similarly, Aisha also told us that her biggest wish was to raise her own family. When looking at family members achieving these milestones, Aisha felt that she was missing out:
My cousins and all that got married and that… And, like, they got a family now with kids and that… And I can see it, and I'm – I'm saying – I'm saying to myself – I'm – I'm, like a bit behind them. Like, one day I’ll try to hopefully raise a family (Aisha).
For Aisha and others, a key problem was not having much experience or support with finding a romantic partner or potential spouse: “it's hard to find a partner... Like, or to know someone and be with someone”. Finding and maintaining relationships was something several participants had struggled with. This problem had begun at school for Jack who had been admonished for kissing his then girlfriend:
Um, so I got a girlfriend from high school and her – she’s nice to me. Her name’s [Girlfriend] and she kissed me a million times and her brother come along and tried to threat [sic] me, like to… like to have a fight or something … now she’s at a different school so I don’t see her anymore, but I want to see her (Jack).
Not all the participants were without intimate relationships. Amelia and Hayden described having a “romance thing”, but to Amelia the relationship was personal, hushing Hayden at times when he mentioned it. They were however discussing moving in together sometime, but had no definite plans, and both felt that to achieve this, they would need more support.