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Work Inclusion for People with Intellectual Disabilities in Three Nordic Countries: The Current Policy and Challenges

Authors:

Hege Gjertsen ,

UiT The Arctic University of Norway, NO
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Stefan Hardonk,

University of Iceland, IS
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Jens Ineland

Umeå Universitet, SE
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Abstract

This article illuminates the work inclusion policies and strategies and the situation today when it comes to including people with intellectual disabilities in workplaces in Iceland, Norway, and Sweden. The article draws on official documents, previous research, and statistics. We discuss challenges regarding the current situation in the light of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and a social relational understanding of disability. The discrepancy between the current situation when it comes to work inclusion for people with intellectual disabilities in these three Nordic countries, and the perspective of human rights and work inclusion are of special interest as these have increasingly provided the framework for policies in relation to the participation of people with disabilities in the labour market. Approaches in Nordic labour market policies and practices must change to protect and promote the rights of people with intellectual disabilities at work.

How to Cite: Gjertsen, H., Hardonk, S. and Ineland, J., 2021. Work Inclusion for People with Intellectual Disabilities in Three Nordic Countries: The Current Policy and Challenges. Scandinavian Journal of Disability Research, 23(1), pp.360–370. DOI: http://doi.org/10.16993/sjdr.821
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  Published on 21 Dec 2021
 Accepted on 20 Oct 2021            Submitted on 12 Apr 2021

Introduction

This article focuses on work inclusion for people with intellectual disabilities within the historical and political context of three Nordic countries, Iceland, Norway, and Sweden. Historically, people with disabilities have experienced exclusion from ordinary workplaces and they continue to experience lower employment rates than the general population (Erickson, Lee & von Schrader 2018; Ineland 2020; OECD 2010; Statistics Iceland 2019; Wendelborg, Kittelsaa & Wik 2017). The Nordic countries have been characterised by a societal model that emphasises citizenship and equality and a policy based on a normalisation approach (Tøssebro et al. 2012). More recently, they have ratified and signed the United Nations Convention on the Rights of Persons with Disabilities (CRPD), 2016, 2013, and 2008, respectively (UN 2007). The ‘Programme for the Nordic Council of Ministers’ Co-operation on Labour 2018–2021’ (Nordisk Ministerråd 2018) reflects the current vision of the Nordic countries on equal opportunities in work and employment. This places an emphasis on increasing ‘participation in the workforce, particularly among vulnerable groups in the labour market’. It includes the participation of people with disabilities in working life through the promotion of equal treatment, and it explicitly rejects segregated labour markets.

In the paper, we focus primarily on people with intellectual disabilities. The combination of ambitious policies and the continuing marginalisation of people with intellectual disabilities in the competitive labour market opens up important research questions in relation to the current situation in the Nordic countries. We draw on experiences from the Nordic countries in terms of challenges and pathways for future consideration and, therefore, hope to add to the mismatch of general policy aims and directions on one hand, and specific laws, policies, and practices on the other.

The concept of work has special relevance in our paper. Work, however, is a complex concept, and not easy to define and delimit. The nature of work has changed and will continue to change. Work has been described as something related to a specific place (away from home, at an ordinary or segregated workplace) and time (i.e., the opposite of leisure time). Others have stressed that work is related to the production of goods and services. Work is also often associated with paid employment (Edgell & Granter 2019). As pointed out in Gjertsen et al. (2021), it is important that the activities involved have sufficient work characteristics to avoid the experience of performing tasks that mimic work activities. In the discussion, we take a closer look at the need to rethink the concept of work. The article focuses mainly on inclusion in ordinary workplaces under ordinary conditions or adopted measures.

Meaningful work has far-reaching benefits for health and well-being (Rosner et al. 2020). Work is important for experiencing life as meaningful (Reinertsen 2016). Positive mental states such as coping, self-esteem, and self-realisation are also related to work. Work structures everyday life and constitutes a vital source for social networks, friendships, and participation (Gruber, Titze & Zapfel 2014). It also contributes to financial and social benefits, which support abilities connected to social participation and active citizenship (Berkman 2014). Participation in ordinary work means the same for people with intellectual disabilities as for people without disabilities (Kristiansen 2000; Bruun & Melbøe 2021). Reinertsen (2016) asserts that access to employment, including segregated workplaces, is important for the quality of life for people with disabilities. Having a job is important for this group for several reasons, not least the fact that a job is a symbol of independence and adulthood (Kittelsaa & Kermit 2015). Adults with intellectual disabilities do not necessarily have an identity as an adult, because the assigned role as intellectual disabled is strong and related to lack of expectations when it comes to independence. Participation in employment, however, does not automatically imply that people with disabilities enjoy the benefits of work, as this depends on the opportunities for inclusion in the work environment (Mik-Meyer 2016; Hall 2004).

The Nordic Context for Work Inclusion

Since the 1960s, policies related to people with disabilities and work in the Nordic countries have been strongly influenced by a normalization ideology, which rests on normative ideals about autonomy and self-determination and, since the turn of the century, a human rights discourse.

Firstly, the Nordic countries have a history that goes back decades concerning the social relational understanding of disabilities and the principle of normalisation. According to a social relational understanding of disability, work exclusion is down to the gap between demands imposed by society (working life) and an individual’s capacity (Tøssebro et al. 2012, Sandvin 2014). The Nordic countries pioneered the principle of normalisation that aimed at creating opportunities for people with intellectual disabilities to participate in society in ways that are similar to the lives of people without disabilities (Nirje 1969). This approach is the basis for the de-institutionalisation movement in the Nordic countries over the past 50 years. This materialised and developed away from collective and institutional living arrangements for people with intellectual disabilities towards independent living and citizenship (Tøssebro et al. 2012). Normalisation has also had consequences for work, reflected in an emphasis on people with disabilities participating in work. In practice, this not only meant employment, but also work activities within settings organised specifically for people with disabilities.

Secondly, the second half of the 20th century saw the development of strong welfare states in the Nordic countries, based on equality, the distribution of risk and full participation in employment (Halvorsen & Stjernø 2008). The Nordic welfare model is characterised by a public sector that provides its citizens with a social safety net and welfare services. The Nordic labour markets are characterised by a combination of high levels of labour force participation, with generous systems that provide compensation for unemployment. Public services offer employment measures and support. Nordic policies are based on the idea that there should be equal opportunities, social solidarity, and security for all members of the population.

Thirdly, the Nordic countries have all ratified the CRPD (UN 2007), which means that they are expected to fulfil the human rights agreements contained therein. The CRPD articulates the right of people with disabilities to work as follows: ‘States Parties recognise the right of persons with disabilities to work on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to people with disabilities’ (UN 2007, article 27). Work inclusion challenges ableist assumptions about the nature of work and the way in which work should be organised, paving the way for diversity as an organising principle instead able-bodiedness (Barnes 2000). Work inclusion encompasses more than a mere presence in employment (Lysaght, Cobigo & Hamilton 2012), which has been shown to have potentially marginalising effects on people with disabilities (Mik-Meyer 2016). Instead, it requires labour markets to create opportunities for people with disabilities on an equal basis with others, extending to opportunities for belonging, making a positive contribution, and having a professional identity (Lysaght, Cobigo & Hamilton 2012). The role of a human rights approach in policy developments in the Nordic countries is illustrated by the ‘Action Plan for Nordic Co-operation on Disability 2018 to 2022’, developed by the Nordic Council of Ministers (Nordisk Ministerråd 2018). The action plan departs explicitly from the Nordic countries’ commitment to UN human rights conventions in defining its general purpose, which is ‘to contribute to the inclusion of people with disabilities by way of better Nordic knowledge-sharing and closer co-operation with regard to disability policy issues.’

Research Questions and Method

Normalisation and human rights approaches, while sharing a common goal of improving the participation of people with disabilities in society, rest on different assumptions about how the interests of people with disabilities are best served. Therefore, they are not necessarily compatible. Culham and Nind (2003) have argued that policies and strategies that were developed within the context of normalisation may constitute an insecure foundation to build a policy aimed at promoting the right to work and inclusion. The CRPD places much emphasis on citizenship through inclusion and articulates the responsibility of government and other stakeholders regarding people with disabilities’ enjoyment of their human rights on an equal basis with others in all domains of society (UN 2007). Although the Nordic countries have had policies in place based on a social-relational understanding of disability and normalisation, it was never solely centred around individual rights (Simpson 2018). The shift towards a human rights approach creates new challenges, including those related to work inclusion and intellectual disabilities. In this paper, we address research questions following the challenging endeavour of putting into practice ideals of work inclusion for people with intellectual disabilities. The main research question is: What are the challenges regarding work inclusion for people with intellectual disabilities departing from a human rights perspective? We address this question in relation to Iceland, Norway, and Sweden. In order to develop this, we are organising our analysis based on two sub-questions:

  • What are the main components of work inclusion in current policy and implementation strategies?
  • What is the current situation when it comes to work inclusion for people with intellectual disabilities?

The research method used in the article is a desk-study. This involves the use of already existing sources. Answers to the research questions were develop through analysis of different types of sources. We have reviewed existing data and statistics, research, public reports, political documents, laws, and regulations from the three countries, focusing on the last ten years. When it comes to statistics for work participation in Iceland, Norway, and Sweden, the availability is different for each country. Reporting on statistics is further complicated by issues of definition and diagnosis. Not all service providers such as municipalities register diagnoses. In addition, not all people with intellectual disabilities are diagnosed or are entitled to disability benefits. For example, Statistics Iceland does not publicly release specific statistics about the employment participation of people with intellectual disabilities, so estimates are based on assumptions by the actors involved. The same goes for Norway, where Statistics Norway only produces statistics about people with disabilities and work in general, although there have been a few studies using register data aimed at describing the employment situation for people with intellectual disabilities. Such studies use different inclusion criteria and age divisions, which complicates the interpretation of the statistics. Statistics Sweden (2020) provides data about the current labour market situation for people with disabilities when this information is registered in Sweden’s population registry. Statistics are presented to illuminate several aspects of participation in the labour market and in the labour force.

Work Inclusion in the Nordic Countries

The main components of work inclusion policy

In Iceland, policy goals related to the participation of people with disabilities are described in the ‘Action plan for issues related to disabled people’, the most recent plan covering the period from 2017–2021. The general goal of the action plan is to secure people with disabilities’ human rights, protect them from discrimination and provide support, so that people with disabilities can live independently on an equal basis with others. The most recent plan does not contain specific actions targeted at people with intellectual disabilities in the domain of work. The implementation of the CRPD in laws and policy is stated as a goal of the action plan. Article 1 also states specific goals, among others, to ‘increase employment participation of disabled people’. National policy on work inclusion for people with disabilities is also reflected in one centrepiece of legislation concerning people with disabilities that governs many aspects of the responsibilities of the state and local municipalities. This law is called the ‘law on services for people with long-standing support needs’ (Lög um þjónustu við fatlað fólk með langvarandi stuðningsþarfir 2018) and declares that its aim is to ensure basic services for people with disabilities to support their participation in an inclusive society, including in relation to employment. The law targets disabled people in general and does not specifically address people with intellectual disabilities. Finally, national policy is also reflected in the recent law that bans discrimination in the labour market, including on the basis of disability (Lög um jafna meðferð á vinnumarkaði 2018). Article 10 of this law gives people with disabilities the right to reasonable adaptations in the workplace in line with the CRPD. It should be noted, however, that there are no policy measures in place to support this right, such as subsidies for workplace adjustments or independent agencies that aim to mediate and settle conflicts about adjustments between employers and disabled persons.

In Norway, a high level of employment is an important objective in labour and welfare policies. ‘The work line’ (Norwegian: arbeidslinjen) has been an overarching policy aim for several decades in Norway (Stjernø & Øverbye 2012). Work is seen as the foundation for welfare, both at society and individual levels. In 2009 a general ‘Anti-discrimination Act’ was introduced in Norway, although for several years, the Working Environment Act has included a clause that prohibits discrimination against people with disabilities. In this official document, people with intellectual disabilities are not specifically mentioned. However, several white papers (Meld. St. 9, 2006–2007; Meld. St. 33, 2015–2016; Meld. St. 40, 2002–2003) and Official Norwegian Reports (NOU 2016: 17; NOU 1985: 34; NOU 2012: 6) underline the importance of work inclusion for people with intellectual disabilities. According to the green paper ‘On equal terms’ (NOU 2016: 17) that examined the situation regarding the rights of people with intellectual disabilities in Norway, more people with intellectual disabilities should be given the opportunity to access ordinary work. It also points out this group’s right to an assessment of work capacity by the Norwegian labour and welfare service (Nav).

Also in Sweden, considered to be in the top rank for equality indices worldwide and showing high social expenditures, policies and regulations support the right of people with intellectual disabilities to work and highlight access to employment as a priority. There are strong labour market policies such as the ‘work-principle’ (Swedish: arbetslinjen) that favour active measures fostering employment, rather than receiving subsidies (Luthra 2020; Piippola 2010). The meaning and benefits of employment have attracted attention in national policy making and have implications that reach from being a tool to manage social expenditure to attaining compliance with the CRPD and enabling active citizenship (Nouf-Latif et al. 2020; Hvinden et al. 2017). People with intellectual disabilities are not specifically mentioned in official documents about work inclusion.

The current situation regarding work inclusion

Segregated work settings

In all three countries, an extensive sector of segregated workplaces is an important pillar of government strategy regarding the work participation of people with intellectual disabilities. For Iceland, Rice (2018) reports on the extensive role of segregated workplaces, pointing out that most individuals with intellectual disabilities who are in work are found in these segregated settings. According to the law, the municipalities are responsible for organising segregated workplaces, but there is no detailed legal framework that regulates these settings (Lög um þjónustu við fatlað fólk með langvarandi stuðningsþarfir 2018). This has led to a variety of initiatives, often subsidised by the municipalities. Overall, this law lacks a clearly stated vision on work inclusion as it does not explicitly prioritise supporting people with disabilities into employment in the regular labour market on the basis of inclusion – contrary to article 27 of the CRPD (UN 2007). The segregated workplaces are run by different entities, such as private actors, organisations for people with disabilities and local municipalities. This situation has been unchanged for decades (881. svar 1994–95). While most of these settings describe their role as preparing people with disabilities for participation in employment within the regular labour market, only a few actively work towards that goal (Rice 2018). This was also illustrated in a recent MA thesis (Hafsteinsdóttir 2020) that reports on a qualitative study about the experiences of people with intellectual disabilities in segregated work settings in Iceland. Here, a participant with an intellectual disability described opportunities for transitioning out of the segregated setting by saying that the only way people can leave a segregated workplace is ‘when they die’. Another recent study that an MA thesis reported on shows that some directors of segregated workplaces are aware of the lack of opportunities for transitioning into the regular labour market (Magnúsdóttir Jacobsen 2019).

In Norway, Nav has a mandate for providing work inclusion for people with disabilities. However, the public labour and welfare service is only responsible for people who are able to work in an ordinary workplace or for their participation in a work measure, without questioning whether the workplace should be adapted Gjertsen (2021). The municipalities organise activities for people with intellectual disabilities at day centres to some extent, but this is not a statutory service, and the activities are often not work-related (Reinertsen 2016). As in Iceland and Sweden, work inclusion for this group in Norway has mainly been organised by segregated workplaces. These are businesses that produces services and/or goods and which were established specifically to offer work for people with reduced work capacity and a need for occupational training. The work is carried out mainly internally in the company, separated from ordinary working life. People with intellectual disabilities who receive disability benefits have been offered work facilitated by the measure of ‘Permanently Adapted Work’ (VTA) in a segregated workplace. They are regular employees under the Work Environment Act and have the same rights and obligations as employees in the regular labour market, except when it comes to wages. Because they receive disability benefit, they only receive a so-called bonus salary. Although VTA is set up to be evaluated periodically to assess the possibilities for transfer to other work-related activities, education, or ordinary work, this is rarely carried out for people with intellectual disabilities (Reinertsen 2016). However, some individuals participate in VTA-measure work at an ordinary workplace on one or more days a week (Gjertsen 2021).

In Sweden, policies are explicitly focusing on an individuals’ flexibility within the market, and not the opposite case, which is encouraged through different support-to-work programmes (Nouf-Latif et al. 2020). It reflects that programs including work placements have been widely recognized as an effective means of equipping people with both generic and job-relevant skills by combining learning and work (Ineland et al. 2021; Kuczera & Jeon 2019). Still, adolescents with intellectual disabilities face harsh discrepancies between the desire to be employed and available opportunities (see, e.g., Reine et al. 2016). A national survey (Arvidsson et al. 2015), analysing 12,269 former students with intellectual disabilities about their post-school careers, show that a minority of 22% worked in the competitive labour market (a majority with subsidized employments), while almost half (47%) had their occupation within segregated workplaces in ‘daily activities’. Daily activities in Sweden are categorised as support and services provided by municipalities. No salary is paid, although a small subsidy is commonly provided to encourage participation. In relation to work inclusion, daily activities risk reinforcing segregation; although the intention of daily activities has been to integrate or even reintegrate people with, for example, intellectual disabilities into employment, research has shown that there are tendencies to cause ‘lock-in’ effects and barriers by not preparing individuals in practical, social, and psychological terms for labour market demands and a competitive work force (Ineland et al. 2019). Arvidsson (2016) shows that for people with intellectual disabilities, almost half (47%) were working in segregated workplaces.

Support in the regular labour market

In Iceland, the public employment service (PES) is responsible for the implementation of a public wage subsidies programme (Lög um vinnumarkaðsaðgerðir 2006). Most people with intellectual disabilities in Iceland are entitled to a disability pension based on an assessment of having a 75% disability (Heilbrigðis- og tryggingamálaráðuneyti 1995). This automatically entitles these individuals to wage subsidies in the form of direct payments to the employer that cover a maximum of 75% of wage costs for employment in the regular labour market. Wage subsidy agreements are limited in time but can be renewed upon request. Most recent data shows that around 800 employees have active wage subsidies (Vinnumálastofnun 2017). This number represents the total of all disability pensioners receiving wage subsidies. No data are available about how many of them are people with intellectual disabilities. Supported employment (SE) for people with intellectual disabilities is organised by the Icelandic PES. An estimate made by the PES in November 2015 points to around 700 people with disabilities being in a job that they obtained through SE, with another 300 on a waiting list. No specific numbers are available with regard to people with intellectual disabilities. A recent study that involved interviewing job counsellors in SE shows that in an unspecified number of cases, applicants to the programme are redirected towards segregated workplaces when deemed ‘unfit for the labour market’ (Hardonk & Halldórsdóttir 2021. In the ‘Action plan for issues related to disabled people’ relatively small grants are foreseen for four specific projects related to employment of people with disabilities (Þingsályktun um stefnu og framkvæmdaáætlun í málefnum fatlaðs fólks fyrir árin 2017–2021, 2017). These projects focus on (1) informing employers about the possibilities of the SE programme offered by the PES; (2) funding of one SE job counsellor at the PES to increase opportunities for young people with disabilities through better collaboration between schools and the SE programme; (3) providing more support for people with disabilities to transition from segregated work settings to the regular labour market; and (4) improving access to assistive technology reimbursed by public social insurance. A survey among people with diverse disabilities and employers was conducted as part of the first project, which shows people with disabilities’ desire to participate in employment and their experience of barriers in terms of adaptations and accessibility. It also demonstrates that employers are generally positive about people with disabilities, but at the same time hold stereotypical beliefs about costs and performance (Velferðarráðuneytið 2018). Currently, no evaluations of the impact of these projects have been made public by the Ministry of Welfare.

In Norway, VTA could be arranged directly at ordinary workplaces by a measure called VTAO (VTA in public) since 2016. Nevertheless, not many people with intellectual disabilities work in VTAO, even if they are a target group (Engeland & Langballe 2017). Over recent years, there has been a change in Norway when it comes to labour market measures in general. The thought process has moved from ‘train then place’ to ‘place then train’ along with Supported Employment. However, the work inclusion approach for people with intellectual disabilities is still mainly ‘train then place’. This indicates that work training should take place in a segregated workplace before a transition to ordinary working life can be considered. Job coaches at Nav, using the SE-approach, do not prioritise people with intellectual disabilities, and hardly anyone with an intellectual disability works in an ordinary workplace with a wage subsidy (Gjertsen 2021). The project ‘Helt med!’ (English: ‘Everyone on board’), organised by a social entrepreneur, aims to integrate people with intellectual disabilities into ordinary work life using an SE approach.

In addition to the different vocational market programmes that are similar to what we see in Norway and Iceland, such as SE, some initiatives to enhance work inclusion for people with intellectual disabilities in Sweden are related to the 2013 reformation of special needs upper-secondary schools (SOU 2011: 8). A main goal with the reform is to prepare students for labour market demands. To meet this goal, Workplace-Based-Learning (WBL) was introduced. WBL is assumed to enhance students’ career-readiness and to improve post-school outcomes by making them aware of labor market demands, their own strengths and weaknesses, and what are regarded as socially adequate identities as employees. The basic idea with WBL is to extend the students’ opportunities to put theory into practice with work experiences, so as to explore within a ‘real-world’ context what they have learned in the classroom. WBL provides students with the opportunity to spend a minimum of 22 weeks of education at workplaces with an assigned supervisor (Ineland et al. 2021).

Participating in workplace activities is considered to provide students with knowledge about vocational cultures and how to become part of a workplace community. However, Ineland and colleagues (2020) show that placing a strong emphasis on ‘work-first’ policies for people with intellectual disabilities in Sweden risks disregarding other (non-economic) policy areas, as well as individual preferences among people with disabilities (see also Nouf-Latif et al. 2020; Gustafsson, Peralta & Danermark 2018). This conclusion helps to explain a paradoxical trend over recent years regarding the employment of people with disabilities in Sweden, that is, that unemployment rates are increasing, while increased support was simultaneously provided by the PES (UN Recommendations 2018).

Statistics on employment participation for people with intellectual disabilities

In Iceland, the participation of people with disabilities in employment in the regular labour market is relatively low, with the most recent statistics showing an employment rate for persons entitled to a disability pension in 2017 of just under 30% compared to 85% for the general population (Statistics Iceland 2019). There are no statistics available on the employment participation of specific groups of people with disabilities, making it difficult to assess the position of people with intellectual disabilities in particular. However, based on their experience with the field, experts within people with disabilities’ organisations, PES and segregated workplaces suggest that employment rates of people with intellectual disabilities should be expected to be lower compared to people with disabilities in general. For many people with intellectual disabilities, work settings outside the labour market are their only option. Although statistics are not available, estimates range from 1,000 persons with disabilities working in segregated settings in the year 2009 (Rice 2018),1 to 1,200 in 2015 (Velferðarráðuneytið 2016), which constitutes a large proportion of all people with disabilities in work or employment in Iceland. No specific statistics about people with intellectual disabilities in segregated work settings are available.

In Norway, the employment rate for people with intellectual disabilities is 24.5% among adults between 20–69 years with a known intellectual disability (Engeland & Langballe 2017). Almost all these people worked under adapted measures, with 90% in segregated workplaces participating in the VTA-measure, and 10% in ordinary workplaces (Proba 2016; Wendelborg, Kittelsaa & Wik 2017). In 2019, the government financed 10,300 VTA-jobs (www.regjeringen.no). According to Wendelborg and Tøssebro (2018), 35% of the VTA-participants in 2014 were people with intellectual disabilities. The employment rate for this group (24.5%) is much lower than the employment rate for people with disabilities in general (43.5%) in Norway and for the whole population (74.1%) (SSB 2020). Olsen (2009) found that only 59 people in Norway with an intellectual disability participated in ordinary work, and very few with an intellectual disability (2.5%) had a VTAO-measure in place at an ordinary workplace (Engeland & Langballe 2017). Between May 2017 and August 2021, 132 people with an intellectual disability have obtained jobs in ordinary workplaces through a project called ‘Completely with’ (Hauge 2021; Helt med! 2021).

In 2019, the employment rate among people with disabilities in Sweden was 69% compared to 79% among people in general (Statistics Sweden 2019). This also includes those ‘employed’ in different labour market policy programmes and different segregated settings. Current statistics do not enable us to differentiate different groups of disabilities in relation to work inclusion. For people with intellectual disabilities in the competitive labour market, research has shown differing employment rates, ranging from 1.2% to 16% (Tideman et al. 2018). In a national survey on post-school activities for former students with intellectual disabilities in Sweden between 2001 and 2011, Arvidsson, Widén and Tideman (2015) concluded that 22 (i.e., 4%) of students with intellectual disabilities leaving special needs secondary schools in Sweden were employed. However, it should be noted that the analysis only included young people with intellectual disabilities aged from 20–30, leaving out information about the labour market situation among people with intellectual disabilities over the age of 30. The same study shows that 6.6% of graduating students went on to further education (e.g., folk high schools), while as many as 24 (i.e., 1 %) ended up ‘elsewhere’, meaning they were neither in work or in further education. A majority of students (46.8%), continued on to ‘daily activities’, a measure regulated by the Act Concerning Support and Services for Persons with Certain Functional Impairments (LSS). Daily activities are available for people with intellectual disabilities who are not gainfully employed or studying and commonly organised as a form of sheltered or segregated employment, and similar to what has come to be described as SE (Byhlin & Käcker 2018).

Challenges to Work Inclusion and Pathways for the Future

The importance of work inclusion is emphasised in political documents in all three countries, with both societal and individual benefits. From a societal perspective it is also apparent that the notion of work inclusion for people with intellectual disabilities is positioned between two political discourses on welfare – one about social policy and one about labour market policy (Olsen 2009). It is somewhat paradoxical, and likely to negatively affect the employment potential among people with intellectual disabilities that one of them (social policy) defines these individuals as being outside of the labour market, while the other (labour market) places a strong emphasis on the fact that, for a number of different reasons, they should be part of it. In addition, the Nordic countries have foregrounded human rights, including the right to work, in their overarching policy ambitions related to equality.

In this concluding section, we will discuss some challenges related to the work inclusion of people with intellectual disabilities in the three Nordic countries and argue for a need to rethink the concept of work and, thus, also the very concept of work inclusion.

Rethinking work inclusion and the concept of work

One challenge evident in this paper concerns how the Nordic countries think about work and who is ‘fit for work’. There appears to be a binary understanding of work capacity implicit in their policy, which affects work inclusion strategies. People are considered as either having employment potential, enabling them to be in employment in the regular labour market, or not having this potential. Those considered as not having a ‘work capacity’ are not included in ordinary workplaces nor are they offered work measures with the purpose of ordinary work. Unfortunately, people with intellectual disabilities are perceived as unemployable, expected not to be able to work in regular jobs, although it can be argued that they often do perform work in segregated settings or in other contexts (Reinertsen 2016). This is, for example, reflected in their being redirected out of supported employment programmes and towards segregated workplaces when they are perceived by support professionals as ‘difficult to employ’ (Hardonk & Halldórsdóttir 2021). The exclusion of people with disabilities in general and people with intellectual disabilities in particular from ordinary workplaces does not correspond to a social relational understanding of disability or the more recent emphasis on human rights of people with disabilities, which constitutes the basis for official policy in Iceland, Norway, and Sweden.

As elaborated, there is an obvious gap between the official work inclusion policy in these countries and actual work inclusion strategies. In all three Nordic countries, these focus on strengthening the individual rather than reducing barriers in the labour market. This helps to explain why people with intellectual disabilities in these countries are almost automatically granted disability benefits at the age of 18, without an assessment of their capacity to work (Gjertsen 2021). People with intellectual disabilities in the three Nordic countries commonly have a disability pension as their main income. The diagnosis of ‘intellectual disability’ often results in being ‘fast-tracked’ to a disability pension, and then on to a segregated workplace (Wendelborg & Tøssebro 2018). It appears that when disability benefits are granted, people with intellectual disabilities are not treated as potential employees by public labour services, irrespective of their desire and their right to join the regular workforce (Proba 2016). They are mainly offered work at segregated workplaces, which has a strong lock-in effect where there are limited opportunities for transferring into the labour market. The large number of people in segregated workplaces in the three Nordic countries in this study indicates that work inclusion strategies regarding people with intellectual disabilities are not firmly rooted in a human rights approach, and still heavily rely on ableist expectation that people with disabilities should only get access to work when they are ‘fit’, that is, their skills and the way they are perceived by others are measured against the notion of the ‘ideal worker’ (Foster & Wass 2012). To challenge this, there needs to be a reconsideration of the taken-for-granted assumption that people with intellectual disabilities constitute a homogeneous group of people who do not have valuable work capacity. The same goes for the dichotomous way of understanding work participation in terms of employment in the labour market versus ‘activity’ in segregated settings. Inspired by feminism and other disciplines, scholars of disability studies have paid attention to the diversity of what could be termed ‘work’ and persistent ableism in structures that define work in terms of employment (Abberley 2002; Graby 2015; Taylor 2004). Work inclusion is, therefore, related to opportunities to participate in work activities that do not only require rethinking of social policy and organisational aspects such as human resource management or the work environment, but also imply the importance of asking questions of what constitutes a valuable contribution through work in line with personal preferences and how such a recognition can be given in mainstream work settings where there are opportunities for building social relations and experiencing trust. The current strong emphasis on segregated workplaces provides an inadequate basis for achieving work inclusion among people with intellectual disabilities, not least those who are described as having the most severe disabilities.

We suggest that taking both individual and contextual considerations into account when approaching what constitutes work in policy and practice would help to understand if and how people with intellectual disabilities are excluded within the present-day conceptualisation of work and employment. It can also facilitate exploring the unintended individual and structural/societal consequences of employment exclusion for people with intellectual disabilities. As pointed out by Gustafsson et al. (2013), these questions touch on the relationship between individual and contextual understandings of disability in relation to the labour market, that is, if a context/individual mismatch is to be understood primarily as lack of workplace adaptions or a lack of vocational skills among people with intellectual disabilities. In all three countries, these questions are important to address at the level of policy, but also in the implementation of policy, for example, in labour market support measures, considering that successful work inclusion depends on collaboration between labour market actors, government, and other actors in society. It is relevant to add that lack of precise data regarding people with intellectual disability makes it impossible to monitor inclusion over time and that disaggregated data should be made available by national government, in line with article 31 of the CRPD (UN 2007).

Work inclusion and the persistence of ‘train-then-place’ approaches

Another challenge is the persistent emphasis on the individual in labour market measures aimed at work participation for people with intellectual disabilities. While the context of policy in the Nordic countries has changed and work inclusion has become foregrounded, labour market measures are still implemented in a way that reflects a ‘train-then-place’ approach, instead of giving disabled employees opportunities for training at ordinary workplaces right away, with support from job coaches (Wendelborg & Tøssebro 2018). The traditional ‘train-then-place’ approach is still visible in the Nordic countries in two ways. First of all, through an important proportion of people with disabilities working in segregated workplaces, which are a straightforward example of the ‘train-then-place’ logic, and it should be noted that many people with disabilities never transfer from these work settings to the regular labour market. Working conditions for people with intellectual disabilities in segregated settings deviate significantly from norms and regulations in the regular labour market and employees are generally not covered by collective wage agreements (Rice 2018; Gjertsen et al. 2021). Most employees in segregated settings receive very low or no wages. As far as working conditions are concerned, many segregated settings perform economic activities that connect these individuals to regular economic sectors and markets, such as producing goods such as agricultural products, and providing services, such as packaging or sorting products. At the same time, recent MA theses reporting on research conducted in Iceland (Hafsteinsdóttir 2020; Magnúsdóttir Jacobsen 2019) show that people with intellectual disabilities working in segregated settings experience the work they carry out as ‘real work’ that places demands on them. However, they do not get the same opportunities as non-disabled people in the regular labour market, for example to acquire new skills, change jobs and earn wages consistent with their performance. Similar experiences have been shown in research from Norway (Olsen 2009; Reinertsen 2016).

Secondly, the implementation of the ‘place-then-train’ logic is not clear-cut in relation to career development in the regular labour market. There is uncertainty as to whether people with disabilities do get the opportunity to obtain further training and skills to develop their careers. Studies have demonstrated that employers and support professionals have very specific expectations regarding employees’ skills, which may lead to people with disabilities not getting opportunities in the labour market (Ju, Zhang & Pacha 2012; Lindsay et al. 2014). Also, researchers have drawn attention to the difficulties experienced by people with disabilities in general and people with intellectual disabilities in particular when it comes to career development and opportunities for learning new skills on the job (Hall 2004; Kulkarni & Gopakumar 2014; Mik-Meyer 2016). When it comes to support for people with disabilities getting jobs and develop careers in the labour market, studies indicate that the success of implementing labour market measures depends on factors such as the attitudes of professionals and the culture of the programme (Bonfils et al. 2017). More recently, Hardonk and Halldórsdóttir (2021) described how contextual factors may reinforce a ‘train-then-place’ logic by focusing on placement for disabled clients who are closest to the labour market.

The normalisation effort lead by the Nordic countries (Tøssebro et al. 2012) has pioneered the development of a strong sector of segregated workplaces to realise a vision of equality that was not in the first place centred around individual rights but rather access to certain (normative) types of roles (Simpson 2018). As a consequence, following the relative success of the Nordic countries in the normalisation effort, the more recent shift towards thinking of employment for people with intellectual disabilities in terms of inclusion and human rights, as reflected in the CRPD, has faced challenges when translated this into policy. As long as the emphasis in policy and measures related to work inclusion is, to some extent, on fitness and training outside the labour market before potential participation in employment can be considered, this conflicts with the CRPD and human rights, underlying the right of all people with disabilities to participate in working life on an equal basis with others (UN 2007), including people with intellectual disabilities. ‘On an equal basis’ means that people with intellectual disabilities receive the same opportunities as everyone else to participate in work or activities based on their own preferences and needs and have real choices when it comes to work, including work in ordinary workplaces. For some people, equal participation will mean ordinary work, and for others, adapted work at an ordinary or segregated workplace, but also different combinations (Gjertsen et al. 2021). Equal participation does not necessarily mean that everyone with an intellectual disability would conduct any kind of work tasks or necessarily work in ordinary workplaces. It does, however, mean having opportunities to participate in line with one’s preferences and skills, and with an emphasis on relational autonomy (Bruun & Melbøe 2021). In accordance with the CRPD and a social relational understanding of disability, this requires a rethinking of the concept of work and ‘how to implement’ work inclusion for people with intellectual disabilities.

Conclusion

This article underlines the gap between the current situation when it comes to work inclusion of people with intellectual disabilities in the three Nordic countries on the one hand, and the human rights perspective and social relational understanding of disability on the other. We have discussed some of the main challenges and highlighted how a binary understanding of work capacity and a persistent ‘train-then-place’ logic play an important role concerning the opportunities for inclusion in an ordinary workplace, resulting in low employment rates and a large sector of segregated workplaces for people with intellectual disabilities. The focus of policy measures and practice has been on strengthening the individual, instead of reducing social barriers. This is contrary to the CRPD, as well as a social relational understanding of disability, and needs the rethinking of the concept of work and ‘how to implement’ work inclusion for people with intellectual disabilities. This rethinking can involve changing the focus in the direction of SE and work participation in ordinary workplaces. It also involves a need for accepting diversity when it comes to work capacity and preferences.

Finally, our findings also imply a call to researchers in the Nordic countries and elsewhere to pay attention to how work and work inclusion is actually understood by people with intellectual disabilities themselves, employers, support professionals, and policy makers. Such knowledge is needed on the level of the labour market, the organisational level, and the individual level in order to create and support opportunities for work inclusion. Our findings also imply a call to governments and their agencies to provide disaggregated statistics – in terms of type of disability, not limited but including intellectual disability. This is one of the obligations of the Nordic countries under the article 31 of the CRPD which they have signed and ratified.

Also, ways for hearing the voices of people with intellectual disabilities in the work inclusion process need to be further developed. The challenges elaborated in this article are best addressed through collaboration in policy and research within and between the Nordic countries. The policy and situations in these countries have many similarities, and there is a clear potential for mutual learning. One obvious challenge is the lack of available statistical evidence and agreement in methods for measuring work inclusion for people with intellectual disabilities, which makes it difficult to describe the progress of employment rates and the impact of policy related to disability employment. It also hinders a comparison between the Nordic countries, which remains difficult.

Notes

1The number ‘1,000’ points to a group with diverse disabilities. The total number of people entitled to a disability pension in Iceland was 17,900 in 2017. 

Competing Interests

The authors have no competing interests to declare.

Author Contributions

The first draft of the manuscript was written by Hege Gjertsen. All authors have contributed significantly to development and revision of the first submission, as well as the first revision after feedback from the editorial team and reviewers. All authors have read and approved the final manuscript.

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