Digitalization of welfare organizations for persons with intellectual disabilities: between democratic ideals, legitimacy and institutional logics

Abstract

Information and communication technology (ICT) and digital media are less accessible for persons with intellectual disability (ID) but are important for citizenship. The aim was to conceptualize officials understanding of ICT usage among people with ID, and to analyze the possible influence of this understanding on the provision of services for people with ID. A qualitative study was conducted, using semi-structured interviews with municipal officials and politicians in the disability service area. Thematic analyses were conducted. ICT use is understood as an arena for democratization. Findings also illustrate the tension between integrity and protection as well as between legal and moral aspects of digital transformation in service provision. This understanding of digitalization is permeated by an individualized approach but conditioned by organizational issues. Disability services can be understood as undergoing digital transformation where regulative and normative elements in this area need to be harmonized to facilitate digitalization successfully.

Points of interest

• This study examines politicians’ and officials’ perceptions of the digitalization of intellectual disability services. This is important as it influences the possibility for persons with ID to be online.

• Digitalization is understood to enable democratization in terms of participation in decision-making, and social activities, and to ‘be a part of society’ but the support and structure to be online are under construction.

• The article suggests that the process of digitalization is also about the responsibility of its provision and use, laws, and of morals, and integrity.

Keywords:

• Democratization
• digitalization
• disability service organization
• ICT
• intellectual disability

Introduction

Over the last decades, Western societies have become more digital and entered a digital era. However, research shows that persons with intellectual disability (ID) face challenges in accessing the digital sphere to the same extent as those without (Alfredsson Ågren, Kjellberg, and Hemmingsson 2020a; Borgström, Daneback, and Molin 2019; Gelfgren, Ineland, and Cocq 2022). Societal services, news, facilitation of daily chores, social media, and personal communication are examples of the seemingly positive aspects of ICT for people with and without disabilities. Many previous studies have focused on the meaning of ICT use among individuals with ID (Alfredsson Ågren, Kjellberg, and Hemmingsson 2020b; Bakkum et al. 2022; Isaksson and Björquist 2021; Ramsten et al. 2020; Seale 2001). Young adults with ID benefit from using the Internet, but their ICT use is neither as wide nor frequent (Alfredsson Ågren 2020; Seale and Chadwick 2017), and their access rate is not as high as that for the general population, even though they are frequent users (Alfredsson Ågren, Kjellberg, and Hemmingsson 2020b; Borg, Lantz, and Gulliksen 2015; Lussier-Desrochers et al. 2017). Consequently, there is a risk of excluding people with ID from society because of the digital divide (Glencross et al. 2021; Lussier-Desrochers et al. 2017).

It has been suggested that possessing products, appearing online, and participating in various forums have become parts of the identity-making process among adolescents and young adults (Peuravaara 2013; Sallafranque-St-Louis and Normand 2017). In addition, the use of Internet-enabled ICT devices such as tablets and mobile phones is a promising approach for enabling young adults with ID to act more independently and participate in different spheres of life (Alfredsson Ågren, Kjellberg, and Hemmingsson 2020b; Isaksson and Björquist 2021; Ramsten et al. 2020). ICT can enable and support social interactions, connections, and daily life activities, and facilitate the pursuit and deepening of personal interests (Bakkum et al. 2022; Barlott et al. 2020; Caton and Chapman 2016; Ramsten et al. 2020), thereby making this technology valuable for the individual. The use of digital technology is also related to age, namely that younger people with ID are more digital than older people (The Swedish Internet Foundation 2022), and that younger support staff are more digital than older support staff. Digitalization also has financial implications for the individual as products can be expensive, and therefore economically out of reach for people with ID (Lussier-Desrochers et al. 2017; Seale 2022) especially as people with ID generally have a low income and are outside the ordinary labor market (Arvidsson, Widén, and Tideman 2015). Digitalization is a complex phenomenon involving both individual aspects and organizational aspects. However, in this study, we will focus on the meaning and importance of organizational and structural aspects of the digitalization of disability services focusing on (young) people with ID.

Like other aspects of life for people with ID, there is a need for support with ICT in terms of both technical and social issues. According to a Swedish study conducted in a social care context, service users did not expect staff to have the competence to provide ICT support (Ramsten et al. 2020) and the staff did not necessarily consider that they should resolve such problems (Ramsten and Blomberg 2019; Ramsten et al. 2019). This is problematic because people with ID experience difficulties accessing ICT, partly because the technology may be unavailable or difficult to use because of their ID (Alfredsson Ågren, Kjellberg, and Hemmingsson 2020b; Harrysson, Svensk, and Johansson 2004). Despite individual difficulties, intervention studies have repeatedly demonstrated that adequate training and support can increase the use and breadth of online participation and enhance social relationships (Li-Tsang et al. 2006; Li-Tsang et al. 2007; Raghavendra et al. 2013). But a lack of guidance at the strategic level directly affects the perceptions of staff regarding their responsibilities and possibilities in terms of supporting ICT for service users (Clifford Simplican et al. 2018; Parsons et al. 2006, 2008; Ramsten et al. 2019). Conditions for staff to support service users, including training and access to ICT are determined by policymaking, specific management decisions, and implementation (Kersten et al. 2018) Despite this, Quilliam, Bigby, and Douglas (2018) showed that although staff had unique knowledge of the individuals needing support, they felt disconnected from managers and organizational discussions, which created a feeling of powerlessness.

In addition to individual aspects of disabilities and staff support, environmental and contextual issues of ICT in a broader sense, such as availability and expectations, these are related to online participation and democratization focusing on organizational aspects (Kersten et al. 2018; Parsons et al. 2006; Ramsten and Blomberg 2019). Here, digitalization is understood as having democratizing ambitions in terms of access to information, increased agency, empowerment, active citizenship, and influence over the own life as well as in society (Barton 1999; Gelfgren, Ineland, and Cocq 2022; Sépulchre 2018; Shah 2016; Waldschmidt and Sépulchre 2019) and hence, less dependence which is also stated in The Convention on the Rights of Persons with Disabilities (CRPD) with particular emphasis on access to ICT and the Internet (United Nations 2006).

This study was conducted in a turbulent time during the Covid-19 pandemic which had a major impact on disability services in Sweden. Despite no imperative lockdown, disability services and people with ID were severely affected. For example, there was a strong recommendation against visits to residential housing, social activities were cancelled, daily activities were cancelled or customized to be digital from home, and visits to a doctor or habilitation centers were either cancelled or digital (Swedish National Board of Health and Welfare 2021). This has further led to an increased focus on digital solutions in the welfare sector, as there were no arrangements for this type of digitalization. Therefore, this study focuses on structural aspects and ideals of digitalization of welfare services for persons with ID.

Digital technology as a means for participation and democratization is embedded in an institutional environment and must be related to norms and social expectations to maintain legitimacy (Czarniawska and Joerges 1996; DiMaggio and Powell 1983; Palthe 2014). Czarniawska and Joerges (1996) argued that the process of change in terms of the implementation of new ideas in an institutional environment is based on how ideas are translated. Digitalization, no longer a ground-breaking idea, has high legitimacy in society, but its role in social care remains somewhat unclear (Gelfgren, Ineland, and Cocq 2022). Therefore, in the present study, we focused on the understanding of digitalization at the strategic level in social care organizations, i.e. among politicians and officials, as a mechanism that affects implementation, and how ideas are translated and eventually embedded and interconnected within the institutional environment (Czarniawska and Joerges 1996).

Aim

This study had two main aims: (1) to conceptualize officials understanding of ICT usage among persons with an ID, and (2) to analyze how this understanding might influence the provision of services for those with an ID.

• How do officials and politicians perceive ICT use among persons with ID?

• What variations in conceptions exist regarding persons with an ID and ICT use?

• How do these conceptions influence the organizational support provided for ICT use in disability services?

Method

A qualitative design was applied with an inductive approach, which allowed us to focus on conceptions at the strategic level in disability organizations. Furthermore, we assumed that these conceptions would have implications at the operational level.

Context

Disability services are based on national law, but the responsibility for executing activities according to law is at the municipality level. Sweden has 290 politically driven and self-governed municipalities. Hence, although the organizations differ between municipalities, they are all politically governed, and political decisions are executed by the administration, i.e. at the strategic level of the organization. The administration makes decisions and formulates the ‘how to do’ from the ‘what to do’ and puts in place the requirements and structure to allow the operational level to implement decisions and change activities.

Support or services provided should be conducted in accordance with the Act Concerning Support and Services for persons with certain functional impairments (Government of Sweden 1993: 387). These efforts should also include leisure activities and enable the disability policy vision of ‘a good life for the individual’, with the aim of full participation in society and equality in living conditions and provide conditions for independence and self-determination (Government of Sweden 1993: 387; Swedish Ministry of Health and Social Affairs 2011). Swedish disability services are influenced heavily by the normalization principle, with the ambition of deinstitutionalization and physical inclusion in society (Nirje 2003; Tössebro et al. 2012). Eligibility for Swedish disability services is based on an administrative definition of ID (Government of Sweden 1993: 387; Swedish National Board of Health and Welfare 2009).

ID occurs before the age of 18 years and is diagnosed based on an intelligence quotient (IQ) below 70 accompanied by difficulties in conceptual, social, and practical skills. IQ alone is not sufficient for a diagnosis because difficulties are also required in several adaptive skills (American Psychiatric Association 2016; Granlund and Göransson 2011). Due to the characteristics of ID, many people with this diagnosis require support to manage their daily life activities (Granlund and Göransson 2011; Grunewald 2008; Gustavsson 1998). This support is a municipal service provided according to a rights-based law in Sweden (Government of Sweden 1993: 387). Despite this ambitious law and inclusive ideology, the institutional structure of disability services still conditions adulthood and the living conditions for people with ID (Lövgren 2013), thereby making disability services a particularly interesting environment for study.

Sample and participants

Participants were recruited from one municipality in a large city situated in the middle of Sweden. A purposeful sampling method (Patton 2015) was applied where all municipal politicians who are on the Disability Board, with ultimate responsibility for municipal social care, were invited to participate in an interview. In addition, municipal officials were invited to participate using a snowball method (Patton 2015) because it was more difficult to identify people in the social care administration with specific assignments concerning disability services. The interviews were conducted between September and November 2020.

Nine people agreed to participate in an individual interview. Three politicians from different political parties and six officials in different strategic positions participated. All the participants had positions with direct responsibility for guiding and developing disability services. Six participants were women and three were men.

Data collection

Semi-structured interviews were conducted. Due to the Covid-19 pandemic, interviews were conducted both as physical meetings and digital meetings. The interviews were conducted via Microsoft Teams video meetings (six meetings), telephone (one meeting), and in person (two meetings). All interviews were conducted without interruption. Participants decided themselves if they wanted a digital or non-digital interview, and all participants that chose a digital meeting were experienced in participating in digital meetings. During the video meetings, participants were located in their offices or at home because of social distancing requirements and working from home due to the pandemic. The participant in the telephone interview moved around while talking, but the sound was clear and uninterrupted. One physical interview was conducted at the university and the other at the participant’s office. All the interviews were audio-recorded using an external recorder. A semi-structured interview guide was constructed, for the purpose of the study, which covered questions about conceptions regarding Internet use in general, conceptions of Internet use among people with an ID, and how they enable ICT use and Internet access at the strategic level of the organization.

The lengths of the interviews ranged from 47 to 93 min (mean 70 min, median 70 min). The interview that lasted 47 min was shortened because the participant didn’t have enough time. The total interview time comprised 10.5 h of conversation.

Analysis

Thematic analysis was conducted to identify patterns and themes across the data, as described by Braun and Clarke (2006). A constructionist perspective was applied, where we assumed dialectical relationships between ICT usage and institutional discourses and understanding the operation in society and disability service organization. Thus, we focused on identifying structural conditions and the socio-cultural context rather than psychological or motivational aspects.

The first step in the analysis involved familiarization with the data, followed by initial coding based on the study aims. During the familiarization process, short summaries of preliminary themes were written by focusing on the core content. In the overall analysis process, we focused on the questions: ‘What conceptions of ICT use are described?’ and ‘How is ICT use understood for persons with ID?’ The descriptions were divided into preliminary themes while writing. The semantic content was divided into three data-driven themes that were checked in terms of their relationships with the coded extracts (level 1) and the data set (level 2). This recursive process involved writing preliminary themes and their descriptions, and then going back and forth between the preliminary themes and data set, starting at a semantic level, and then moving towards somewhat more abstract themes. The process involved continual discussions between both authors, where themes were revised and refined until consensus was reached.

Ethics

The study complied with the requirements of research ethics in social sciences involving humans (Codex 2022) and the Declaration of Helsinki (World Medical Association 2013). All questions were related to the participant’s jobs at disability organizations or official political assignments on the committee responsible for steering municipal disability services. Information about the study was provided both verbally and in writing. All participants consented to being interviewed and to the recording of the interviews. Confidentiality was ensured by handling and storing the research data in an appropriate manner, and by avoiding revealing details in the presentation and analysis, but without making the presentation excessively general. Given the nature of the research question, it is not an ethical issue that requires an ethical review (Government of Sweden 2003: 460).

Results

The participants could understand the potential of digitalization in social care settings for both service users and providers, and as an important avenue for democratization by helping to set the agenda and generally facilitating participation in society. According to our data, digitalization in social care is characterized by parallel development processes and continual movement within and between the organization and service users.

Digitalization as democratization

The ability to be digital and use technological devices are commonly considered important aspects of active citizenship in society. A main finding in this study was the notion that an online presence and digitalization can help integrate service users with a disability into society. For instance, digitalization and ICT were recognized as having the potential to increase participation in decision making, promote user involvement, and improve client-professional care relationships, as well as in social activities and democratic activities in a broader sense in society. Thus, digitalizing social care settings was considered a strategy for realizing the intentions of national and international disability policies and guidelines. Another important finding was the notion that the general technology needed by service users already exists, but the support and structure in disability care are still under construction.

We talk a lot about digitalization in our activities, but what is it we really mean? It’s not remarkable technology in our areas really… Computers and programmes already exist and they are here, so there has to be a provision from us working with this target group who don’t have the ability, or have imposed that expectation on front-line staff to work with it, or rather work more with it… And if you have started to use a certain programme or application, you might get a little stuck with it because we are all people of habit. (IP9)

There are so many smart solutions… I’m thinking of live streams, such as galas that have been live streamed and provided to those who previously might have needed to stay home, so they can take part in a broader range of activities… I think more things are offered …. but it’s probably often related to whether someone can help. (IP1)

Our findings showed that technology such as ICT was perceived as more than merely an assistive aid and was described in general terms in relation to societal development and a movement towards how information and services are available in an increasingly digitalized society. The following quote illustrates some of the aspects of ICT in relation to democratic issues:

It (the technology) is supportive, but requires skills for use… The unavailability of technology is of course excluding because you must have a smartphone for example…you can pay with it, conduct banking issues, deal with tax authorities, and everything is online today so if you can’t manage it, you become very excluded. (IP5)

The quote above suggests that a smartphone is considered a ‘must have’ to be an included, connected, and active citizen in different spheres of life. It also highlights the immediate exclusion of a ‘digital foreigner’. However, although digital inclusion was perceived as an important basis for active citizenship, the participants also acknowledged that digitalization itself is insufficient for this status. In particular, the increasing availability of information and services online demands accessible solutions, including for citizens with reduced cognitive abilities. Information is available but not automatically accessible for people with ID and may therefore be out of reach. Knowledge of inaccessible applications and websites for people with ID is demonstrated by the following quote:

And we consider what e-services we can have […] It can be an application for assistance. And it’s evident that such services must be accessible. You must be able to get to the website read out; that’s basic, but it has to be described with pictures showing how you can apply and what services you can get. And that’s interesting, we do discuss that at times – who owns the responsibility of access? It was discussed at the political Board meeting yesterday that we tend to be very bureaucratic in our communication and service users don’t understand. (IP4)

Technical devices have been used as aids for communication for a long time by persons with ID. However, using more traditional, old-fashioned aids is considered a cause for embarrassment in relationships with others, whereas ICT is considered to promote sameness and a sense of normality. Thus, ICT has the potential to facilitate participation and inclusion simply by eliminating products that symbolize differentness. The following quote captures some aspects of digitalization, assistive devices, and a sense of normality:

A smartphone can be an assistive aid, where you have applications that constitute the assistive aid in it. Our adolescents [with intellectual disabilities] want to be like everyone else and everyone has a smartphone. And it has helped to increase the usage [of assistive aids]. Now those persons don’t look different with a smartphone, but it was another story before when they had a handi [a hand computer for time and planning] or a schedule on the wall. It was really embarrassing when friends visited. I really think it has facilitated the use of ordinary ICT and that should be developed further. (IP7)

Accessible online information and technology are necessary for allowing persons with ID to benefit from the democratic potential of digital media and applications. Not providing access to digital media and communications could lead to a divide in terms of digital competence, economic opportunities, cognitive abilities, technical equipment, and digital connections between those who have the resources and participate in such communication and activities and those who do not (cf. Ineland et al. 2019). In addition, despite digital competence and private ICT usage, digital connections and the availability of technical equipment seem to be organizational barriers to the establishment of accessible digitalized environments in welfare structures. These barriers are affected by legal and ethical matters related to the existing judicial frameworks and structures of the municipal organization. Despite a broad range of conceptions regarding the risks and rewards of ICT usage, there is consensus among participants with respect to the importance of accessible (organizational) requirements for ICT. This is to ensure that persons with disabilities are included as active citizens in society, as demonstrated by the following quote:

The technical infrastructure must be in place. There should be opportunities for the target group […] development isn’t static, and we are all responsible for development. We can, as an administration, provide the requirements for development, and have some kind of control. (IP4)

Hence, the ability to use ICT does not follow automatically from the ambitions of municipalities regarding the development of digitalized disability services. At the activity level, it is necessary to target the use of assistive devices, where smartphones can include these devices (such as applications and software) besides classical aids, but also the use of a regular operating system. As a consequence, the situation is somewhat unclear in terms of the legal and financial responsibility for purchasing and the functionality of devices.

The thing is that you have to get the device, and sometimes you can get it as an assistive device but it differs a lot, and it depends on your impairment. If I have a smartphone, maybe I can get an app as an assistive device, so I do not have to pay the fee of about 100 SEK a month. (IP2)

There is slight confusion between general use of the Internet and ICT and assistive aids. However, the digitalization of disability services is a process related to citizenship and democracy, and it also raises issues in terms of inter-organizational responsibility and individual-organizational responsibilities.

Tensions in the digital transformation in social care

A recurrent theme in our findings was uncertainty about management in the new (digital) sphere in terms of questions regarding the integrity and morality of service providers. This theme highlights the delicate problem of keeping the needs and independence of service users at the forefront while simultaneously safeguarding their online activities and relationships. This problem involves socially challenging activities, but also must consider the costs and potential risks associated with various economic transactions. This is generally viewed as a balancing act among participants because it requires new ways of thinking about and responding to the relationships, interactions, and activities of service users compared with the service provided in the pre-digitalized era. The Internet connection provided by the municipality must ensure moral and legal support for regulating the online activities of service users and preventing them from visiting websites that are not regarded as suitable. These issues were addressed recently and are integrated into the organization’s formal structures for dealing with digitalization and online activities in terms of relationships with service providers and users. Thus, one must consider the complex relationships between Internet access and financial and legal considerations. As shown by the following quote, the participants were also hesitant regarding moral/ethical responsibilities when persons with ID engage in online activities:

It’s not only about what websites you can end up on, but also about getting your computer hacked or being scammed into revealing your bank details, and there are other hazards as well. People in general are deceived all the time… I think people should be online, but you need to know about and be aware of the hazards. (IP5)

Most of the participants in this study highlighted the value of being online and ‘going digital’. They also expressed concerns about how they (the organizations and services providers) should deal with digitalization and technological support in institutionalized environments given the associated legal, social, financial, and ethical considerations and responsibilities when engaging in digital activities and relationships.

The goal to enhance democratic rights through digitalization faces different structural, legal, and financial barriers because these ambitions are formulated in an institutional context of service provision where individuals are commonly viewed as clients of the welfare state. Some technical assistive devices are not readily converted into digital versions: ‘there have always been assistive aids, but they haven’t always been digital… just in recent years, computers and smartphones have come to be viewed as supports’ (IP8). In addition, further social and ethical aspects need to be addressed when discussing digital infrastructure in welfare practices. In summary, our findings indicate that issues such as accessibility and financial responsibility for an individual’s device appear to be unclear, thereby creating a somewhat paradoxical situation. For instance, a device that is considered an assistive device is the financial responsibility of the local authorities, even though it is purchased by an individual (client). In addition, aids that were previously prescribed by the authorities (e.g. video telephones) are now available on personal smartphones and computers, thereby increasing accessibility and availability to individuals. Thus, organizations (and service providers) are in a challenging position of having to balance what should be regarded as socially accepted when using ICT privately in a welfare state context, as demonstrated by the following quotes:

For reasons of integrity, they should be in control… it is not our business if they (service users) watch porn or engage in online gambling…We probably don’t have the right to get involved in that at all, although many think that we should. But if it is their own private equipment and Internet connection… it is challenging and where do you draw the line? (IP1)

It is difficult to see where to draw the line regarding an individual’s privacy… Those who are aged 20 and older and live by themselves, how much can I intervene? So how do you bring these questions [regarding online behavior and risks] to the table without blaming someone? (IP8)

The participants clearly stated they were challenged by the possibilities of digitalization and the fact that their targeted group (service users) often lacks the resources to exploit these possibilities, as well as how to think about integrity, autonomy, and online security. Problems related to integrity could make it difficult for others to engage with service users in Internet activities and manage the risk of their online behavior. Depending on interests and skills, staff could provide explanations and discuss issues with service users. This generally only happens if the service user initiates a conversation and asks a question because the staff is rarely knowledgeable about the Internet usage of specific service-users. However, persons with ID need support in their daily lives, including ICT and the Internet, because of their technical, cognitive, and social abilities.

In addition, being able to navigate digital environments is generally viewed as something learned at an early age and outside welfare state contexts. The participants stated that digital competence and the use of social media and digital applications increased among service users when they mimicked their peers during adolescence. This indicates that the younger service users in disability services are better equipped for engaging in ICT activities.

You learn about it at elementary school […] but you also learn a lot from friends about how to use TikTok and Snapchat and all that they can do, and you learn that much quicker than what a teacher could ever teach. (IP5)

However, the assumption that learning and digital competence occurs primarily as a result of everyday social interaction with peers may fail to consider the cognitive abilities and social contexts (e.g. schooling) of many people with disabilities.

Unequal requirements for digitalization for service users

Disability services generally apply an individual focused approach where individuals must take control of their own life and are expected to be as independent as possible. This approach is ideologically desirable, but also shifts responsibility from the overall organizational level to front-line staff. The individual focus is essential for meeting the special needs of each individual and providing the support required. Services are based on individual requests so it is expected that staff will provide support (generally with daily chores and specifically with online support) when requested. Hence, support is conditioned in two ways because it must be requested initially and might not be provided if the service user cannot request specific support. In addition, the requested support should be formulated and written in the implementation plan as a recurring activity with a specific objective. Using these structured and institutionalized practices in service provision complicates the embeddedness of ICT and reduces the possibility of individuals being active agents in a changing democratic and social sphere.

with leisure center (which had digital activities during COVID-19) and Facebook, it’s mostly consumption of what is offered. It doesn’t require activity and participation to move forward, or to actively use an assistive aid and understand. But helping someone search on YouTube, it’s probably quite easy if you want to broaden that (use)… staff (who support individuals with Internet use/consumption) work on an individual needs basis and this should be written in the implementation plan with goals and subgoals. So, it is guided based on individual needs or what one wants to do during leisure time, and staff must then take part in the implementation plan and follow it up. (IP2)

The (lack of) structure forcing front-line staff to manage situations without guidance was highlighted as a core aspect of inequity regarding how and what support service users can expect. Participants stated that tensions regarding integrity and legal aspects could hinder the construction of a supportive digital structure for their service users. Another main finding is that unresolved tensions could lead to unresponsiveness by political leaders and administrators in terms of providing support and guidelines, thereby leaving front-line staff to manage these problems regardless of whether they have the capacity or not. Consequently, the strategic and management level of the organization becomes separated from the operational level because these unresolved issues hinder the implementation of a formal structure. Thus, the existence of apparent solutions to problems regarding activities could make the participants believe that their involvement and guidance is unnecessary. However, the consequence of this conscious separation for service users is illustrated by the following quote:

I can imagine you work very differently in different locations […] Equal, it is definitely not that. And those who live in these different supported homes meet and talk in several contexts and then get to hear “you get that support, I get none” and the parents talk a lot to each other in different contexts. And even there, you know “in this home you get that help, in that home no one knows anything” and of course irritation occurs among service users, parents, and society. It really isn’t equal because, it depends a great deal on chance whether you get support as nothing has been done on management level (IP6)

As shown by this theme, the possibility of service users accessing ICT in a disability service context is strongly related to organizational guidance. Digital media is perceived as a democratic issue, but various tensions must be considered because of the institutionalized context which conditions ICT.

Discussion

The study had two main aims: to conceptualize the official understanding of ICT usage among persons with ID, and analyze how this understanding might influence the provision of services for persons with ID. Our findings indicate that ICT usage is conceptualized in terms of democratization and as a transformation of disability services and is also affected by moral and legal tensions. The perception of ICT and the digitalization of social care environments as a democratic issue is related to an overall goal of social care based on a human rights perspective (CRPD) (United Nations 2006) and national law (Government of Sweden 1993: 387). Hence, it is affected by regulative and normative elements, where the former indicates organizational legitimacy through judicial appropriateness and the latter through common and assumed behaviors in contemporary society.

Our findings agree with previous research on the viewpoints of actual service users, which demonstrated that online activities are important for independence and participation in several spheres of life, that are not always available offline (Bakkum et al. 2022; Caton and Chapman 2016). However, we also identified moral risks associated with digital transformation, which may clash with normative elements and influence how, when, and why ICT should be implemented. The inability to address this issue may have consequences for the implementation and aims of digitalization, and finally affect participation and the democratization of persons with ID.

The problems with digital transformation were explicitly demonstrated not only by our findings regarding digital infrastructure development and unresolved legal and ethical issues, but also by the ambiguities in practice with respect to how digitalization should be implemented given the existing use of the Internet by service users (‘We probably don’t have the right to get involved in that at all, although many think that we should…’). The translation (Czarniawska and Joerges 1996) of digitalization in our study, i.e. how ideas are implemented could have been institutionalized in the social care setting, but the idea may still not be adapted to the disability service setting. According to our findings, legal and moral tensions currently exist in the digital sphere with respect to social care provision, and particularly in the digital transformation of service provision, where cognitive elements of caring prevail.

The basic tension between legal and moral obligations appears to put officials in a cognitive position where social media activities are considered as aspects of democracy. Values, personal desires, and social identity need to be internalized to pursue organizational change (Palthe 2014). In this study, we investigated access to digital environments in a difficult context where lack of internalization in combination with these tensions put participants in a position of being unable to carry out appropriate actions to pursue digitalization.

Our findings also clearly demonstrate that digitalization is associated with complex and sensitive issues such as integrity and protection at all levels of the organization, as previously described from a front-line staff perspective (Chadwick, Quinn, and Fullwood 2017; Ramsten et al. 2019). This can also be understood as an operationalized issue regarding responsibility for legitimacy of the organization. Therefore, if service users become exposed in any way that the organization could predict, manage, or prevent, then the logic of caring could be questioned, and thereby the quality and legitimacy of the organization. This raises important questions that could be investigated in further empirical research regarding digital structures, legitimacy, and conceptions of ICT among persons with ID.

The understanding of ICT use among the participants could have direct effects on implementation in social care, and thereby the daily lives and professional encounters between staff and service users. These tensions represent an obstacle that could slow down development, and it might also be necessary to harmonize attitudes, practices, and rules throughout the organization. Our findings indicate that concepts comprising having to and ought to implement (Palthe 2014) digital solutions are the driving forces in this transformation, but that a genuine want to is lacking. It is particularly interesting that digital transformation is not considered desirable (want to) within the organization. For persons with ID in disability services, this situation has direct consequences for their daily lives in terms of equality and democratization, as also illustrated by our findings.

Given the organizational context in which democratic potential through digitalization is formulated, this article suggests that such ambitions are in parallel with strong intentions to support and abilities to safeguard the interest and integrity of persons with intellectual disabilities. Those with ID are simultaneously perceived as capable and vulnerable (Ramsten and Blomberg 2019), which influences the understanding of persons with ID as a group, disability services, and what is needed in terms of support for a good life. In addition, other aspects at the psychological, collegial, and professional levels influence attitudes toward digitalization in this specific context. Therefore, further discussions are required at the individual and structural levels in the social care field to understand how we can promote ICT by harmonizing cultural systems with moral and legal systems.

Although not evidenced in this paper, recent research shows and highlights the increased risk of online exploitation for persons with ID (Chadwick 2022; Didden et al. 2009; Normand and Sallafranque-St-Louis 2016; Wright 2017). Although this study points towards structures of digitalization of a whole sector rather than digitalization for individuals, an important circumstance and need for further research are the online risks such as financial fraud, computer hacking, cyber bullying, sexual solicitation and the potential for social media contagions such as developing tics similar to Tourette’s syndrome, and the need for this to be managed within the welfare sector (Wells and Mitchell 2014).

Limitations

The data used in this study was collected during the COVID-19 pandemic. Therefore, most of the interviews were conducted digitally. All participants were used to this type of meeting, but it could have affected their interactions in the interviews (Bryman 2016). In addition, the municipal disability service had made great efforts to manage the pandemic situation, and thus other issues such as digitalization were a lower priority. The understanding of ICT use should not have been greatly affected by this situation, but the issue could have been understood as a low priority.

Conclusion

In this study, we found that ICT and digitalization in disability services are understood in terms of democratization, and that the transition to digitalization is affected by tensions that might contribute to inequity in support provision. Our findings contribute to existing research by characterizing the circumstances that could affect the occurrence and dominant perceptions of digitalization. Specific tensions need to be harmonized to implement digitalization successfully in this context.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was funded by Forskningsrådet om Hälsa, Arbetsliv och Välfärd.