‘Just because one has attended a special class does not mean that one isn’t capable’: the experiences of becoming and being not involved in traditional occupations for young people with intellectual disability

ABSTRACT

Young adults with intellectual disability face challenges in securing post-secondary school occupations. This can result in being Not in Employment, Education, or Daily activity (NEED). This qualitative interview study analyzes the subjective experiences of the process to becoming and being NEED. The analysis focuses on individual as well as structural factors, and how these are experienced in different arenas in society and in interactions with agencies. Interviews with 10 participants followed by thematic analysis were conducted. The results indicate that the process from secondary school to being outside of traditional occupations is not linear. Individual factors such as desires, abilities, and health problems, combined with structural factors of limited or unsuitable post-school occupations and challenges with formal support contribute to understanding people with intellectual disability who are NEED. The experiences of being NEED relate to social exclusion underlined with notions of normality and stigmatization of having an intellectual disability.

KEYWORDS:

• Intellectual disability
• Not in Employment
• Education
• or Daily activity (NEED)
• post-secondary school

Introduction

For young people in general, the transition from secondary school to an occupation has become more individualized and is described as a yo-yo pattern (Olofsson 2014). This entails longer transition periods and movements between occupations and periods of not having an occupation, which differs from earlier patterns of more direct transitions from school to work (Olofsson 2014). Simultaneously, there are increased rates of young people not participating in employment or education (Eurofound 2012). Research using the national database Halmstad University Register on Pupils with Intellectual Disability (HURPID) examines the post-school situation for 12 269 young people with intellectual disability who have attended Upper Secondary School for pupils with Intellectual Disability (USSID) in Sweden. According to Arvidsson, Widén, and Tideman (2015), many former USSID students participate in unpaid disability day programmes (46.9%) referred to as daily activity. Another 22.4% are employed and few are participating in further education (6.6%), while almost a quarter of these former students, 24.1%, are not involved in the above mentioned occupations (Arvidsson, Widén, and Tideman 2015). There is limited knowledge about the latter group defined as Not in Employment, Education or Daily activity (NEED). Quantitative results illustrate a heterogeneous picture where background, support and services, and family factors all have significant associations with NEED status. For example, many have financial support, few have disability services, and the family situation in terms of partnerships and having children were for women associated with being NEED (Luthra et al. 2018; Luthra, n.d.). However, to generate deeper and nuanced knowledge it is necessary to understand first hand experiences of becoming and being NEED. Therefore, the aim of the present study is to analyze the subjective experiences of the process to becoming and being Not in Employment, Education or Daily activity (NEED). To fulfill this the analysis focuses on individual as well as structural factors, and how these are experienced in different arenas in society and in interactions with agencies and institutions. This can contribute to increased knowledge of the NEED group and develop supports that facilitate participation and occupations for people with intellectual disability.

Previous research

In the general population, young people not participating in traditional occupations are referred to as Not in Employment, Education, or Training (NEET) (Eurofound 2012). Multiple structural and individual factors such as incomplete education, disadvantaged backgrounds, health problems or a disability, relate to a young person facing challenges with securing employment or being NEET (Eurofound 2012; Olofsson 2014).

People with intellectual disability in Sweden attend secondary school known as Upper Secondary School for pupils with Intellectual Disability. This school form provides an adapted four-year education and offers national, special designed, and individual programmes (Swedish Education Act 2010, 800; Swedish National Agency for Education 2016). The transition after USSID can entail employing different strategies (Molin 2008). Some accept having an intellectual disability and utilize supports through the community care system; while others strive for a sense of normality (Molin 2008; Szönyi 2005). The right to participate in working life is outlined in the UN Convention on the Rights of Persons with Disabilities. However, people with disability including intellectual disability, have low employment rates (Lövgren, Markström, and Sauer 2014) and face barriers such as negative employer attitudes (Andersson et al. 2015), being deemed as less capable (Kaye, Jans, and Jones 2011), and securing permanent and long-term work (Tøssebro 2012). Higher education leads to positive employment outcomes for people with intellectual disability (Kaya 2018). However, USSID limits further educational pursuits since it does not qualify for higher post-secondary school in Sweden. Another arena after USSID is to participate in daily activity. There is criticism towards daily activities and vocational activities since they are unpaid, can lead to a lock-in effect, and limit transition to employment (National Board of Health and Welfare 2008; Tideman, Lövgren, and Szönyi 2017). An example of a lock-in effect is daily activities retaining good workers in order to keep their establishment running (Tideman, Lövgren, and Szönyi 2017).

Supports and services are available to people with disability. The Swedish Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS 1993, 387) is part of the social safety net that provides 10 different services and supports, including daily activity, in the everyday life of people with disability. Other formal support include financial support known as activity compensation for young people with disability who are not able to work full time, and various labour market policy programmes. Previous research shows that people with intellectual disability have mixed experiences with formal supports and services. Services for assisting the transition from school to adulthood has been regarded as inadequate, uncoordinated, and short-term, which can cause anxiety for young people (Foley et al. 2012; Young-Southward, Cooper, and Philo 2017). People with intellectual disability may distance themselves from services because they do not identify with the diagnosis, do not want to take on a client role, show mistrust and fear towards services, or experience services as stigmatizing and unsuitable (Olin and Ringsby-Jansson 2009). The support for people with intellectual disability to gain employment should begin early and be individualized, flexible, long-term, and holistic (Lövgren, Markström, and Sauer 2014; Tideman, Lövgren, and Szönyi 2017), with multiple well-coordinated services that focus on individual needs and characteristics (Kaya 2018). In line with the viewpoint of social problems, disability occurs in the relationship between the individual and the environment. In short, the conditions for people with intellectual disability to gain employment are created by the individual’s abilities in relation to the environment’s demands and adaptations. This is important for understanding NEED status and for professionals in the social work field that work with the target group and aim to promote participation in occupations.

Theoretical approach

Being NEED can be regarded as a form of social exclusion. Social exclusion refers to being denied rights and opportunities that lead to individuals and groups not being able to fully participate in the social, economic and political activities in the society in which they live (Taket et al. 2009). Not having employment leads in our society to social exclusion, since the individual is not able to earn a living nor participate in work related social relations (Nilsson and Bäckman 2014). Social exclusion can be viewed as a process and/or a state and is multidimensional (Taket et al. 2009). Weak social exclusion focuses on the individual and their characteristics that cause them to be excluded, thereby also leading to proposed solutions that focus on the individual (Davidsson and Petersson 2016). Strong social exclusion however, targets societal structures and agents as driving forces to people becoming excluded (Davidsson and Petersson 2016). Social exclusion is the result of a cumulative process of categorization and stigmatization of being deviant, in relation to what is considered normal (Petersson and Davidsson 2016; Taket et al. 2009). According to Goffman (1963/1986), stigmatization occurs when individuals do not live up to informal social norms, which results in being unlike others who are ‘normal’, and individuals usually develop strategies to deal with this.

Method

Design

This study has a qualitative design and semi-structured interviews were conducted with 10 individuals. The interviews were conducted with an interview guide where the aim of the study was broken down into themes and questions. The design allows for gaining access to concrete, detailed and extensive empirical exemplifications of everyday experiences of being outside of traditional occupations. The study has been approved by the Ethical Review Board in Lund, Sweden (Nos. 2016/719).

Data collection

The inclusion criteria was a background in USSID, being 20–30 years old, and not being involved in employment, education or daily activity. Participants were either currently NEED, or had previous longer periods of not being involved in traditional occupations. Gatekeepers informed potential participants who fit the criteria. Research with the target group can require additional measures and flexibility. For example, the participants received written and oral information, including confidentiality and anonymity, at multiple times. Interviews took place in the participant’s home or in meeting rooms. In three interviews, the participants chose to have a support person present. Before the start of the interview, questions were answered and consent forms were signed. The interview guide focused on the following themes: time in USSID, experiences with occupations and formal support, and experiences of exclusion and participation. The interviews were recorded and had an average time of 49 minutes. After the interviews, the participant and the researcher discussed and ensured that the participant felt comfortable.

Participants

In the present study, intellectual disability was defined as having attended USSID. However, the authors acknowledge that diagnoses and assessments of individuals placed in USSID can vary. The participants were recruited through organizations that work with young adults with intellectual disability, for example daily activity, leisure activities or organizations that facilitate employment. Participants were also recruited through municipalities, Habilitation services, online advertisements, and school personnel at USSID. A total of 10 individuals (5 men and 5 women) between the ages of 21 and 31 from various municipalities in Sweden participated in the study. Their background demographics are shown in Table 1. At the time of the interview, the majority were not involved in an occupation, while four participants currently had an occupation but had previously been NEED. Pseudonyms are used for the participants.

Table 1. Description of participants

Name	Age	Program in USSID	Current occupational status
Eric	21	Construction secondary school	No occupation
Vincent	31	Handicrafts program; Society and nature program	No occupation
Elliot	30	Does not remember; did not graduate	No occupation
Sofie	22	Food program; Health care and nursing program	Further education
Samuel	24	Arts program	No occupation
Adam	31	Practical program; Hotel and restaurant program	Daily activity
Julia	29	Arts program; Sports program	No occupation
Alice	24	Natural resource secondary school	No occupation
Charlotte	29	Arts program	Practicum through daily activity
Emma	28	Art, drama and music program	Practicum through daily activity

Analysis

The interviews were transcribed verbatim shortly after being conducted. The transcriptions and memos written after each interview were read several times, in order to become familiar with the material (Braun and Clarke 2006). The coding and analysis of the data was done in accordance with framework and thematic analysis (Braun and Clarke 2006; Bryman 2015). Meaningful units relevant for the aim of the study were extracted and concentrated for each participant, and initial codes were noted. These meaningful units were then organized in a matrix across all participants and arranged in categories. Themes and subthemes were generated, during which these were continuously reviewed by moving back and forth between the data and themes. The authors discussed all stages of the coding and analysis to ensure validity.

Results

A commonality among the participants is that since secondary school they have tried various occupations. Many have tried multiple daily activities and some have experienced further studies or employment. One participant has had various daily activities and multiple maternity leaves. For all the participants these occupations have been combined with periods of being NEED. The analysis shows two themes, each with three subthemes that capture the experiences of becoming and being NEED. The themes are illustrated in Table 2.

Table 2. Themes and subthemes that capture the experiences of becoming and being NEED

Themes	Subthemes
Relating to normality	USSID versus mainstream school
	Disability and barriers
	Identifying with a disability
Individual context and encounters with the system	Desire for and demands of an occupation
	Administrative challenges and injustice
	Individual health and illness

Relating to normality

A central dimension in becoming and being NEED is experiences of relating to normality. These experiences manifest in different arenas and at various levels, as can be seen in three subthemes.

In the first subtheme USSID versus mainstream school, some express awareness that USSID is a different school form, as indicated by them naming mainstream school as normal or regular school. Some express being treated differently because they attended USSID, compared to how students are treated in mainstream school. Vincent says ‘I was treated as different. I was not treated like a…normal…person’. Similarly, Alice states ‘We felt that they (the school) did a lot for the other like regular students but not as much for us that attended USSID’. These quotations show a distinction between mainstream school as normal and USSID as a deviant school form, where a result of attending USSID is being treated differently. There are stereotypes associated with USSID and Sofie explains a skewed image where individuality is ignored:

What I experience a little of USSID is that there is like a very skewed image of (…) how a person that goes to USSID is. (…) often that it is a person that it is visible that one has a handicap (…) all these typical things are often associated with USSID (…). This with having a diagnosis (…) it doesn’t have to be this image that one gets. Rather that, (…) everyone is very, very very individual and that one should like not see a person based on that they have attended USSID.

Sofie’s quote shows her experience of the de-individualization of people who have attended USSID and being categorized and stereotyped by others. The experiences of distinctions between USSID and mainstream school, creates an awareness of normality and deviance.

In the second subtheme disability and barriers, distinctions are made between people with and without a disability, and additional challenges as a result of having a disability are illustrated. Having a disability leads to being treated differently. Participants express that USSID is not necessarily an adequate education and people with disability are regarded as less employable, which limits their pursuits of an occupation. Jobs demand requirements or skills, such as specific education, experience, or driver’s license that some of the participants are lacking, as illustrated by Samuel:

When one has a disability then it is harder to get a job. One doesn’t have this education that…because (…) all jobs require certain experience (…). They require experience like do you have an education or do you have merits so it is very hard to get into the labour market if you don’t have any contacts.

In line with the experiences above, USSID and subsequently having a disability is seen as a barrier for employment, in terms of lacking proper educational credentials or skills, and because of the negative view of people with disability. Similarly, Eric shared his struggle with admission to further education after having applied several times without success: ‘(…) education and stuff it like shouldn’t be so hard to get in to a school and folk high school. Just because one has attended USSID does not mean that one isn’t capable’. This creates a distinction between people with and without a disability, where having a disability and a USSID background entails facing additional challenges in pursuit of an occupation and can contribute to young adults not participating in traditional occupations.

The third subtheme identifying with a disability focuses on the individual’s own identification with a disability, and suggests two lines of experiences. Firstly, a comparison between oneself with a disability and others with a disability. Secondly, not identifying with having a disability and comparing this with others who have a disability. This is illustrated in attitudes towards and experiences with daily activity. Three participants that were currently in a daily activity/practicum seemed happy with their placements. However, common expressions stated by the majority of the participants is that daily activity was not a suitable option because it is too easy, where they see themselves as more capable and unlike the people in daily activity. Elliot says: ‘They are so weird there. I’m too smart for them’ and Julia says: ‘Like it was fun and stuff and to get out and stuff, but then I felt that I could do so much more than that, than daily activity. So I felt that it wasn’t…wasn’t really my thing’. Emma found daily activity unstimulating:

Nooo (…) it was good for you but…it could get like a little calm sometimes, one could even sleep on the job if one wanted to. I thought that was not very fun, so I went home when it was like that. (…) and then we still had nothing to do and then I know that we just have to be there. That was not so fun. I like to do things.

Participants make a distinction between themselves and others with a disability, where they themselves are not as deviant as people in daily activity, as stated by Charlotte:

I can say like this that daily activity, not that I am too good to get admitted to that. They said that she is so capable (…). For these things I was offered it was like people with worse handicap than me. So those who sat in wheelchairs for example, they said that Charlotte doesn’t fit in here.

These quotes and experiences show that their own capabilities or desires exceed that of daily activity. Subsequently, this is an inappropriate occupation that they distance themselves from. After Alice realized daily activity was not for her, she tried to get a practicum but had little success:

So I was on my supervisors and stuff, and they were very nice and stuff so it wasn’t that, but I told them that I want like help to get a practicum and they just yeah but we will fix that and…so then I had to fill out a lot of papers over and over again but nothing happened. So then I felt…now I may as well…be at home or something like that *laughs*.

Alice’s example illustrates a lock in effect of daily activity where it does not lead to practicums or employment. As a result, not having an occupation is seen as a better alternative. Daily activity is at times referred to as work, yet distinctions are made that this isn’t a real job. This indicates that daily activity is not suitable for everyone, particularly not for those who find it to be too easy, do not identify with others there, and rather want employment.

Some participants express not fully identifying with having a disability, thereby creating a distinction between themselves and others with a disability. For Sofie receiving a diagnosis challenged her identity since she had always identified with others without a disability. Suddenly she instead had to accept that she was different. Eric and Sofie express feeling misplaced in USSID, Sofie says: ‘I was like very obedient (…). While everyone else like just running around and like did a little of what they wanted. And I felt, well that I did not really…know what I was doing there’. Their experiences suggest they did not identify with having a disability or attending USSID. This is a negotiation between the categories of normal and deviant, where they aim to be regarded as normal. Eric sees himself as more capable of working compared to people with a disability:

(…) I have worked at a retirement home 8 hours and done all of that. Helped old people and preschool also 8 hours and…military…I don’t think that (…) someone that (…) has maybe Asperger or yeah some handicap maybe, you know what I mean? (…) can do the military or I don’t know I just think. Like do these things I do.

Eric’s quote places himself in the category of normal as opposed to deviant. He feels an aversion to daily activity because ‘They have bad wages. One can’t move out with that small wage (…) no, I can do so much more than them. I don’t want to be like mean, I want a real job, real wage, and (…)…real work hours’. These comparisons show that they regard themselves as normal and capable, which makes services for people with intellectual disability such as daily activity inappropriate.

Individual context and encounters with the system

The second main theme focuses on individual context and challenges with the system that together contribute to understanding why people are NEED. This is seen in three subthemes.

In the first subtheme desire for and demands of an occupation, the desire for an occupation is strongly present in the participants’ statements: ‘I also want something to do during the day because all my friends work and stuff, I’m just at home’ (Julia). ‘ I would like to have a job because I am just at home right now and…it is starting to get like boring now so’ (Alice). In a similar vein Samuel states:

(…) I want to work, like I’m not one that wants to, sit at home and be lazy, but (…) I…want to make money, I want to be able to get somewhere. It is frustrating that it isn’t … it is difficult to get a job, it is.

These quotations show an ambition to work and their current state of having no occupation as undesirable. The desire to find an occupation such as employment is also expressed by family members, and in some cases families have helped with work opportunities. This suggests a strong tradition of moving from secondary school to employment. The difficulty with finding employment is described and participants have applied to jobs with little success. Specific careers that the participants want to pursue are for example to work with people, social work, landscaping, professional football player, or police officer/security guard. Yet some state that even though they want to work, they are unsure of the type of job they want. The participants that currently have practicums regard this as their jobs and are happy to be working. Only one participant, Elliot, expressed no desire to work: ‘If I could choose myself I wouldn’t want to work at all (…). But now they (mother and father) want me to work’ and ‘I have never been a worker ant, I don’t understand why one should work’. Elliot’s quotes indicate that employment is encouraged by his parents, rather than by his own ambitions. He sees little value in having a job and instead is content with his current situation of not having an occupation, which is in contrast to all the other participants in the study.

In the arena of employment, many of the participants have had experiences with work, practicums or sheltered workshops. However, a commonality in their experiences are challenges such as following set times or schedules, difficulties managing time, working certain hours, working full time, tasks not being enjoyable, difficult tasks, working in hectic environments, sedentary jobs or physically straining jobs: ‘(…) I can’t handle working like regular/normal people. I can only work one month at the most and then (body falls together)’ (Vincent). ‘I worked there 80% before but…then I did not have the energy because of my ADHD and stuff and I became very tired. I sat at a screen all the time, then one doesn’t have the energy’ (Samuel). These quotes suggest that regular working structures, such as working full time, is not ideal. In other cases, employment has ended due to lack of finances, social intrigues among co-workers, or having a workplace that did not understand the individual’s disability. The conditions of the job have to be suitable for the individual, if not it leads to difficulties or not continuing with the occupation.

Several participants also express a desire to pursue further education or a value for education as a means for future employment. A total of six participants have been enrolled in further education after USSID, including folk high schools or special education for adults. Only one stated no interest for further studies. In the arena of further education, some thrive with the structure of learning, and feel a sense of community and support. Others explain not adhering to the time schedules of school or not enjoying it as reasons for discontinuing. Vincent says: ‘because I didn’t come when I had class and left when I hadn’t finished…so they decided not to admit me to the school again’. Some express that further education was unstimulating or unsuitable and the importance of proper support and flexibility is emphasized.

In order to understand the experiences of being NEED and the process that has led to becoming NEED, the second subtheme administrative challenges and injustice refers to experiences with the system of formal supports and services in and after USSID. These experiences relate to challenges in attaining support and suggest that formal support is not always easily received or maintained, nor is it always conceived as fair.

Despite having ambitions of finding an occupation after secondary school, it was also common to not have any plans. Four participants express that they didn’t have any clear plans after USSID, Samuel states: ’I don’t think that I had any plans *laughs* but the first thing was that I would take a sabbatical year (…). I wanted to work but I didn’t know with what. I didn’t know what I could do’. Four others had plans to find work, practicums or study, but these plans did not work out. Adam says: ‘I wanted to have a real job when I finished school but it was very hard (…). It was that one wanted a real job, but then it didn’t turn out that way so then one had to take what you could get’. Finding a job was difficult for Adam since he thought he could do more than he could, he eventually started at daily activity instead. Some participants share that they were promised a practicum or employment from agencies, without any results. One participant had her first child right after USSID, thereby her post-school occupation was maternity leave. The post-school options that are conveyed by the surrounding environment play an important role as illustrated by Sofie: ‘It was the teachers that more so said to the students…that daily activity is like the alternative afterwards (…). It was like that or like be unemployed’. This gives a restricted message about available options and that daily activity is the encouraged post-school occupation. The lack of or unclear plans suggest that the process of becoming NEED already begins in USSID.

It is common to have experiences with various formal supports after USSID. Positive aspects include supportive administrators who listen, while negative experiences include being treated as a child, not being heard, poor or uncomfortable treatment, unsuitable support, and that agencies can have a skewed image of people with a diagnosis. At the time of the interviews, three participants had no formal support specifically helping them to find an occupation.

Many express that the system of formal support can be frustrating and confusing. Administrative challenges are highlighted such as large amounts of paperwork, long processes, miscommunication and errors by agencies. For some, the administrative process or finances are hard to navigate on their own, and family and professional assistance is needed. The notion of being shuffled around the system of formal support is found in some participants’ stories. Samuel says:

I have had very many different doctors (…). No doctor has been able to give me a doctor’s certificate. (…). They said “turn to this place” when I go to this place then they say ”oh but you can go to B instead ”. Where I already was. So it has been a circle.

The key notion in Samuel’s quote is that he goes back and forth between doctors and agencies, which he expresses as tiring and frustrating. Others mention having to re-explain their situation every time they seek new support or that various formal supports are poorly organized: ‘(…) the Social Insurance Agency see me as able to work and the Public Employment Service see me as not capable to work, so I am between chairs a little bit. So they like don’t listen to each other’ (Emma). Emma illustrates that uncoordinated formal support and different evaluations lead to consequences for the individual, where they are caught in the middle. The older participants mention that the termination of activity compensation after age 30 causes uncertainty, but also administrative issues and systematic errors lead to delays. The long waiting times for financial support can be frustrating and some are unsatisfied with decisions of being denied formal support.

The importance of money or earning an income is highlighted by a majority of the participants. Financial support such as activity compensation and housing allowance/supplement is common; however, financial difficulties are often expressed. This is seen in everyday situations where a poor financial situation interferes with purchases, choosing cheaper options for eating out, that activities cost money or not being able to pay rent. Participants who need temporary financial support turn to social services or borrow money from their parents or partners, as expressed by Julia:

So now I have not had any money since august, so I have had to borrow money from my mom and my dad to be able to pay rent and everything. So now I am just waiting that I will get this paper so I can get my money. So now I have to borrow a lot now for Christmas and everything.

Experiences with formal support for people who are NEED shows feelings of the system as unfair. For example, that formal supports are denied so that authorities and agencies can retain money. Alice believes she did not get proper support from daily activity to find work, because by keeping her there they could earn money from the municipality. Five participants express feeling inconsistency in how supports, such as financial supports, are allocated. Three participants have been told they are not eligible for financial support, which leads to feeling injustice and frustration. For some there is mistrust for agencies, which has made them reluctant to seek support while others have had bad experiences with not being heard, being denied support or poor quality in the available support. Alice says:

(…) we had meeting with the Public Employment Service at school and stuff. And they just said yeah but you are not ready and all that stuff, but I have not been given a real practicum because I have not gotten help so then I can’t prove.

Alice quote shows how the system has categorized her as not capable to work, which she feels is unfair since she has never been given the opportunity to prove that she is. Similarly, Charlotte has had continuous struggles with the Social Insurance Agency where she feels that they did not listen nor let her speak for herself. This caused emotional stress, and she started to believe that maybe she was incapable:

They (the Social Insurance Agency) promised lots of things that they could not keep. That I would get help, that they would fix it so that…they did not offer me anything for 5 years. I sat at home for 5 years. I was a wreck then I can say. Because I am a person that wants to try, but if no one gives me the chance then it becomes like that one thinks oh can’t I do anything?

The participants’ experiences with formal support as challenging or unfair points to central aspects that can contribute to being NEED. When asked about desired support, the participants wish for more help in pursuing their occupation of choice or financial support. They express needing encouragement, understanding, and seeing the individual rather than drawing generalizations. Charlotte states the need for understanding the individual’s underlying problems or needs rather than seeing them as incapable and keeping them waiting in the system. Early support and being given a chance is stressed; that society’s attitudes towards people with a disability need to embrace diverse talents and capabilities.

In the third subtheme individual health and illness, six respondents mention health challenges including depression, panic anxiety, physical injuries, operations, feeling psychologically unwell, and self-harming behavior. These health concerns are given as one reason for periods of being NEED or why they stopped working or daily activity, but also as central to influencing some participants’ well-being in general. For some this has been in shorter periods, whereas others have long-term challenges with their health and psychological well-being, which in turn has impacted their participation in an occupation.

Discussion

The UN Convention on the Rights of Persons with Disabilities outlines the right to participate in working life; however, the present results show a multifaceted understanding highlighting both individual and structural factors that contribute to young people with intellectual disability not participating in traditional occupations. One commonality from the participants’ experiences is that the transition from USSID to being NEED is not linear, which is similar to patterns of young adults in the general population (Olofsson 2014). Rather than being linear, the participants have moved in and out of various occupations and NEED status. Some have shuffled around within the system of services and supports, and some have tried occupations and varied this with time as NEED. For others, their movement between occupations and being NEED has been caused by challenges with finding an occupation that is desirable and fitting, or personal circumstances such as their health or having children. The results highlight the importance of young people, especially young people with intellectual disability, being given the opportunity to share their experiences in matters that concern them, which in turn can influence social work practices.

Employment is highly valued in society, but not everyone will be able to meet the demands of a traditional job and society’s emphasis on employment as ideal therefore becomes problematic (Olin and Ringsby-Jansson 2009). The results show a strong desire to work or to have an occupation. Only Elliot expressed no interest to work.

Despite a desire for and experiences with occupations, various individual and structural factors challenge the pursuit of an occupation and contribute to their NEED status. Individual factors include challenges with routines and structures, unenjoyable occupations, health and illness, or the occupation not fitting with needs or desires. Health and mental illness were expressed as one of the reasons for NEED status and for some affecting their overall well-being. Health problems may lead to being NEED, or it may be the opposite direction that not having an occupation leads to health problems. Increased mental illness among young adults in general contributes to disengagement from employment and education, and relates to the rise in financial support such as activity compensation (Olofsson 2018). People who are NEED have varying abilities and preferences, which highlights the need for individualized formal support (Kaya 2018). Moreover, occupations need to be a good match for the individual.

For structural factors that contribute to becoming and being NEED, the participants’ experiences illustrate negative stereotypes, difficulties with post-school options, and challenges with formal support that at times hinder rather than facilitate. Participants show awareness of difficulties that result from having a disability and USSID background, and experiences in pursuing an occupation, such as employment, have had limited success. This is in line with previous research displaying barriers for people with intellectual disability in pursuing work and that multiple organizational, structural, and individual factors are necessary to gain employment (Kaye, Jans, and Jones 2011; Lövgren, Markström, and Sauer 2014; Tideman, Lövgren, and Szönyi 2017). Many participants express that daily activity is not an occupation that fits them, since it is too easy, not a real job, and they do not identify with others there. This aligns with Olin and Ringsby-Jansson (2009) that people with intellectual disability can resist the support system and services are regarded as stigmatizing, especially for those who felt misplaced in USSID or who fall on the border of having a disability. Seeing oneself as normal or not as deviant as others with an intellectual disability, subsequently leads to not wanting to partake in activities meant for people with intellectual disability such as daily activity (Szönyi 2005). Daily activity also has potential lock in effects (National Board of Health and Welfare 2008; Tideman, Lövgren, and Szönyi 2017), which shows in Alice’s experience. People who are NEED and have a mild intellectual disability perhaps see themselves as more capable, which in part explains why they choose to distance themselves from daily activity. If available post-school options for people with intellectual disability are unattainable or unsuitable, it leaves few other alternatives and can help explain why some people are NEED. Overall, there is not one post-USSID option that fits everyone since this is a heterogeneous group, rather the type of occupation has to fit with individual preferences and abilities.

Challenges with formal support presents another structural factor that is central to the experiences of becoming and being NEED. Several participants express a lack of support during and after USSID. This is seen in not having clear plans after USSID, and that the received support have at times felt inadequate, confusing or unfair. The transition from secondary school can lead to heightened anxiety, particularly when young adults feel unprepared and post-school activities are undetermined (Young-Southward, Cooper, and Philo 2017). This highlights the need for better preparation and implementation of proper individual support before and after the transition from USSID. Navigating the system of formal support can be confusing or frustrating, or feel like one is shuffled around. Coordinating various types of formal support is central to ensure that the individual receives coherent and continuous support. This is important since multiple and well-coordinated formal support services can increase employment outcomes for people with intellectual disability (Kaya 2018). Formal support needs to be flexible since there can be other aspects that the individual needs help with (Lövgren, Markström, and Sauer 2014; Tideman, Lövgren, and Szönyi 2017). For example, the participants express challenges with structures or routines of an occupation, such as difficulties with keeping times, the tasks not being enjoyable, and working full time. Individual and structural factors together increase understanding why people become or remain NEED. For people with intellectual disability to have a suitable and desirable occupation, there needs to be consideration and appropriate support on an individual level as well as improvements on a broader structural level.

Being NEED can be considered a form of social exclusion since it entails not fully participating in society (Taket et al. 2009), and has consequences of financial instability or lack of social participation (Nilsson and Bäckman 2014). The process of social exclusion for people who are NEED can be explained by individual factors, weak social exclusion, such as not wanting to work, which is the case for Elliot, but more commonly health concerns or individual desires and abilities. However, a strong form of social exclusion for people who are NEED is to focus on school forms, limited or unsuitable post-school options, and inadequate support, which all hinder people with an intellectual disability in their pursuits of an occupation and consequently contributes to being social excluded (Davidsson and Petersson 2016).

A main result relates to notions of normality whether it be comparing USSID with mainstream school, people with a disability versus people without a disability, and comparisons between oneself and others with a disability. Despite the distinction between normal and deviant, participants make personal distinctions of being not as deviant as others with a disability, for example people in daily activity. A strategy for dealing with the categorization of having an intellectual disability or having attended USSID can be to seek normality (Szönyi 2005). Social exclusion can be understood as a result of being categorized and stigmatized as deviant (Petersson and Davidsson 2016). In line with Goffman (1963[1986]) stigmatization for people who are NEED can result from having an intellectual disability, having attended USSID, and their lack of an occupation, all of which differ from notions of normality and informal social norms and as a result lead to social exclusion. One strategy of the participants is to distance themselves from these norms, such as employment as ideal, while another strategy is to hide or not expose their problems openly, for example not identifying with or minimizing their disability (Goffman 1963[1986]). Even if people who are NEED often are stigmatized, they themselves often feel that they are normal (compare Goffman 1963[1986]). These notions are for some already present in USSID and continue in their experiences of being NEED.

The use of ‘NEED’ on the one hand identifies an important group. However, this label can also be interpreted as highlighting people though a negative of not having an occupation or as incapable. Similar discussions on the label ‘NEET’ exist (Yates and Payne 2006), emphasizing the impact of language. The authors acknowledge this and through the present study hope that the participants’ individual experiences are highlighted.

Limitations

Although the study had a smaller sample, saturation became apparent by the 10^th interview. There are likely people who are NEED that are much further removed from society, and who are harder to contact and represent. Some may find it shameful or difficult to talk about their situation, which can interfere with how they share their experiences or who agrees to partake in the study. Future studies should continue to increase understanding of the NEED group, by conducting large-scale studies and interviews to further identify the process of becoming and exiting NEED status. In addition, focusing on specific NEED subgroups such as those who are further removed from society would generate valuable knowledge.

Conclusion

This study provides first-hand knowledge of the experiences of becoming and being NEED and addresses the previous limited knowledge of this group. The results present a heterogeneous group where their time since USSID has not been linear. This suggests that the post-USSID occupational options can be regarded as limited, challenging, or unsuitable and not always fit with individual desires or abilities. The participants’ experiences with formal supports and services highlight the need for early and coordinated support. Overall, the experiences of becoming and being NEED is influenced by the interaction of individual and structural factors. It can be regarded as a form of social exclusion where individual, and more importantly structural factors underlined with notions of normality and stigmatization are contributing aspects. The study emphasizes the multidimensionality of NEED status and the need for individualized and holistic supports that increase participation in occupations, and prevents social exclusion of people with intellectual disability.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by Misa AB;Halmstad University.