‘There is a fear of not being SUPER knowledgeable’ – social workers striving to enhance children’s participation in the assessment process for disability support

ABSTRACT

There is a need for more knowledge about how to enhance children’s participation in the assessment process when applying for support in accordance with the Swedish Disability Act (SDA). Here, Augmentative and Alternative Communication (AAC) has been highlighted as a successful way of letting children have a say in matters that concern their everyday lives. This study examines, from social workers’ perspectives, how increased participation can be made possible for children with disabilities during the process of decision-making and planning for support. Based on focus group interviews (N = 17) and individual interviews (N = 11) the findings reveal that the social worker shows a readiness to listen to children’s voices. However, they experience a range of both facilitating, but predominantly complicating, factors when meeting with the child and their parents. It is argued that the social workers’ professional discretion to some extent is influenced by the prevailing organisational culture, where a permissive work climate and proactive leadership are attributed great importance.

ABSTRAKT

Det behövs mer kunskap om hur barns delaktighet kan stärkas i bedömningsprocessen vid ansökan om stöd enligt Lagen om stöd och service till vissa funktionshindrade (LSS). Här har Alternativ och Kompletterande Kommunikation (AKK) lyfts fram som ett framgångsrikt sätt att låta barn komma till tals i frågor som rör deras vardag. Denna studie undersöker, utifrån socialarbetares perspektiv, hur ökad delaktighet kan möjliggöras för barn med funktionsnedsättning under beslutsfattande och planering för stöd. Baserat på fokusgruppsintervjuer (N = 17) och individuella intervjuer (N = 11) visar resultaten att den handläggande socialarbetaren ofta visar en beredskap och vilja att lyssna på barns röster. De upplever dock en rad både underlättande men framför allt komplicerande faktorer i mötet med barnet och dess föräldrar. Studien konkluderar att socialarbetarnas professionella handlingsutrymme för att främja barns delaktighet i utredningsprocessen i viss mån påverkas av den rådande organisationskulturen, där tillåtande arbetsklimat och proaktivt ledarskap tillskrivs stor betydelse.

KEYWORDS:

• Children’s participation
• disability
• Augmentative and Alternative Communication (AAC)
• professional discretion

HUVUDORD:

• Barns delaktighet
• funktionshinder
• Alternativ och kompletterande kommunikation (AKK)
• handlingsutrymme

Introduction

Many children with intellectual disabilities (ID) need support in everyday life and commonly encounter professionals in health care and social services. In accordance with Swedish disability policy, people with certain disabilities are entitled to support through the Swedish Disability Act (SDA), and 95% of children receiving support through this act have an ID (The National Board of Health and Welfare, 2019). For decades, it has been the parents who have spoken for their children when it comes to social services. However, research shows that when the social worker listens to the child's own thoughts and wishes in assessment processes, i.e. in decision-making and planning for support, the child is in a better position to later benefit from the support they receive. It also benefits children’s well-being by being involved in issues that concern them (Vis et al., 2011), and since they will often need interventions throughout their lives and must, as adults, be able to protect their rights themselves, children have everything to gain by starting early (Nowak et al., 2018).

In Sweden the Convention on the Rights of the Child (CRC) became law in January 2020. One of the basic principles of the Convention, Article 12, highlights the child's right to form and express their views and to have them considered in all matters affecting the child (UNICEF, 2009). The same is emphasised in the Convention on the Rights of Persons with Disabilities (CRPD), Article 7, ensuring that children with disabilities have the same rights to freely express their views (United Nations, 2006). Furthermore, SDA is based on the principle that every individual has the right to participation, self-determination, and influence and children who are affected by an intervention must also be given relevant information and the opportunity to express their views when applying for support (SFS, 1993:387). In this way, the aforementioned conventions and welfare legislation draw attention to the fact that children are recognised as competent actors and bearers of rights, rather than bearers of problems to be remedied (Heimer et al., 2018).

After applying for support according to SDA, the assessment process involves determining whether a child has the right to interventions and being able to implement them in a substantiated manner, which is why a social worker together with the child and their parents must discern needs and wishes. An assessment is then made which is the basis for a decision. Here, the social worker has a central role in enabling children to understand and be heard during the process. The most common interventions are those that aim to give caregivers some respite, such as short-term-stays for younger children, and for older children, there are companion services, aiming to support children in leisure time activities (SFS, 1993:387). To decide if the child is eligible for the requested intervention, the social worker must determine what the child can/cannot manage in relation to the intervention for which the application applies. This is primarily done by talking to the parents but also to the child. Most children with ID need support to both understand the process and express their views. Depending on individual challenges, the kind of support needed during this conversation can differ. However, previous research on the assessment process has shown that social workers’ efforts to involve children in the process are often limited to convincing the child to accept the proposed SDA intervention, and to a much lesser extent involve helping the child to express views about needs and problems (Engwall & Hultman, 2020). Additionally, the child with a disability is often regarded as immature and in constant need of developing various abilities, while their siblings are attributed needs in terms of recreation and quality time with their parents (Engwall & Hultman, 2021).

Listening to and talking to children is not the same as allowing them to participate (Vis & Thomas, 2009). However, listening to children can be seen as a fundamental prerequisite for children's participation (Lundy, 2007). Studies of children's encounters with social welfare authorities have shown that the following factors can come into play when children do not participate: (1) the social worker's fear of harming the child; (2) the social worker's difficulty in communicating with the child; (3) the social worker's perception of how the concept of participation should be understood, whether it is about participation in decision-making or participation in a process (Vis et al., 2012).

It has been noted that strengthening children's participation in conversations with social workers using Augmentative and Alternative Communication (AAC), with all its ways of supplementing or replacing ordinary speech, has been successful. AAC functions as support for understanding, which most people with ID benefit from, and AAC, designed for children and adults with ID, has been used for many years to promote both speech and understanding. For example, Thunberg et al. (2022) have conducted interviews with children, with and without disabilities, as well as their parents and health care professionals with experience of using AAC, during and after the children’s hospital visits. The children's participation increased when they were shown pictorial support supplemented with easy-to-read texts when communicating with health care professionals.

Today there is a plethora of tools supporting conversations, some of them also available as digital apps, that can lead to less reliance on others in meetings with professionals (Buchholz et al., 2018). Staff members who work with children daily in different kinds of disability settings are often familiar with AAC, but knowledge of the attitudes of government staff (social workers) and their propensity to use AAC is extremely limited. This is a problem that tends to limit children's participation in issues related to their daily lives (National Board of Health and Welfare, 2019). Overall, current research has mainly focused on children's participation in the encounter with the welfare system concerning issues of child protection (Leviner, 2018). In addition, national research on participation and SDA has primarily been dedicated to examining how self-determination and influence are manifested in the initiatives that follow legislative decisions. Consequently, the knowledge of statutory practicing social workers and their attitude towards and inclination to use AAC in principle is non-existent. This is a problem that tends to limit children's participation in matters concerning their everyday lives.

Thus, the overall aim of this article is to examine, from social workers’ perspectives, how increased participation in the assessment process can be made possible for children with disabilities. Based on Shier's model of participation the following questions have been indicative:

• What challenges and opportunities do social workers describe and what specific actions are they taking in their efforts to enable children to express their views and understand the assessment process?

• What characterises social workers’ attitudes and professional discretion regarding use of AAC to enable children to communicate?

Shier’s model of participation and professional discretion

When the concept of participation is approached, it is often in reference to the understanding that people can have different degrees of involvement in life situations (WHO, 2001). However, when it comes to children’s rights and influence in decision-making, it is above all Harry Shier's (2001) development of Hart’s ‘ladder of participation’ that is often used in research and practice. Shier's model, which is grounded in Article 12 of the CRC, defines participation based on five levels from (1) when children listened, up to level (5) when children share power and responsibility for decision-making. Each level also has three different types of commitment, with additional self-reflective questions for adults who meet children in different contexts, such as Openings, Opportunities and Obligations. In Figure 1 the minimum level for children’s participation according to the CRC is also highlighted. In this way, the work of promoting participation is not only a matter of individual professionals’ attidtudes towards participation, but also a question of the extent to which organisational prerequisites for participation exist. At the same time, it is important to problematise various forms of participation estimates (or ‘levels’) where it is often implied that higher levels are in all respects and situations better than lower levels (Molin, 2020). In this study, we understand and use participation in Shier's sense, i.e. focusing on connotations related to the extent to which children are listened to, that they have their say, and that they can understand what is happening during the process of decision-making and planning for SDA support.

Figure 1. Amended version with permission from Harry Shier by e-mail 6 November 2022.

In accordance with Lundy (2007), it is also required that the child's statements are taken seriously by someone responsible for decision-making and that the child's perceptions lead to the adults’ actions being based on what is appropriate from the perspective of care and participation.

In addition, we strive to understand the contextual and organisational conditions of participation.

As a complement to Shier’s model, we have adopted a framework inspired by organisational theory with the aim of understanding encounters between the individual and representatives of welfare institutions. Our attention is drawn to how people are processed through the welfare system and the role of the social worker preforming ‘street-level bureaucracy’ (Lipsky, 2010). More specifically, the term professional discretion has been used to describe and understand the meaning of performing professional social work. Svensson et al. (2010) claim that both administrative and cognitive frameworks influence what is possible to achieve in an organisation. For professionals, it becomes important to think independently when approaching cases, but also to be aware that the professional is an actor in an organisation. Reflecting on the meaning of professional discretion contributes to the possibilities of using power relations in a conscious and constructive way.

Methods

Context of the study and participants

The study presented in this article is part of a 3-year (2020–2023) research project with the overall aim to examine, from both the professionals’, children’s, and parents’ perspectives, how increased participation can be made possible for children with disabilities during the process of decision-making and planning for support in accordance with the SDA. This article is based on results involving social workers who have experience of assessment processes for children with disabilities.

In total, three male and 14 female social workers from nine different municipalities participated in four focus group interviews (N = 17). Ten female and one male social worker representing five municipalities participated in individual interviews (N = 11). The municipalities represented are rural areas, medium-sized municipalities, and one large city. The participants have degrees in social work (socionom), social pedagogy, or similar; a few have also undergone training in AAC. They had worked with assessments in accordance with the SDA between one and 20 years, although mostly about five years. The majority of participants in the focus groups had worked with both children and adults, while half of the participants in individual interviews worked only with young people up to 30 years of age and half with all ages.

Data collection

The empirical data in this article were collected through both focus group and individual interviews. The purpose of conducting interviews in focus groups was to collect a range of opinions from social workers having in common their experience of assessment processes with children, which they were able to discuss rather than answering questions. Interviews in focus groups are considered particularly effective when it comes to capturing the attitudes of professionals (Krueger & Casey, 2014). The reason this was chosen as the data collection method was to capture social workers’ attitudes towards the use of AAC to enable the child's participation. Individual interviews were used to capture social workers’ experience with methods and their professional discretion.

The interviews were conducted during 2021–2022, via Zoom. A semi-structured interview guide was used during focus group interviews containing questions related to attitudes toward AAC as a way of enabling children’s participation in the assessment process. The sessions started with the moderator making a statement that the participants could agree or disagree with. An example of a statement is: ‘I find it easy to use other ways of communicating than just speech’. Then the participants could argue for their positions. After that, they were organised into breakout rooms without the interviewers being present and were instructed to discuss different themes related to the child’s participation in the assessment process, e.g. using AAC tools during conversations with children. These discussions lasted for 15 min. Then, gathering with the interviewers, the groups summarised their discussions.

In the individual interviews, a semi-structured interview guide was used containing questions related to participants’ experience of methods, as well as their professional discretion when it comes to enabling children’s participation. The focus group interviews lasted approximately 60–80 min, and the individual interviews 30 min. With consent, all interviews were audio recorded and transcribed verbatim.

There is a possible limitation and risk in using two different types of interview method. A general criticism that is usually emphasised regarding focus groups is that respondents influence each other's thoughts and answers to varying degrees and that individual answers are not necessarily representative of the group. On the other hand, focus groups are recommended when it comes to capturing, for example, the attitudes of a certain professional group towards a given phenomenon. Therefore, in relation to the two research questions, in this study we have chosen to combine both focus group and individual interviews with the aim of capturing both attitudes towards children's participation in SDA investigations and professionals’ discretion in an organisational context.

Data analysis

The data were analysed using thematic analysis. This is a method for identifying, analysing, and reporting patterns/themes in data following six steps (Braun & Clarke, 2006). (1) the transcribed material was read and reread, noting ideas and reflections. (2) interesting passages in the text were selected, generating initial codes. For example, all quotations about ‘following templates and control’ were collated. (3) all codes were interpreted, keeping in mind the aim. Thereafter, all relevant codes were sorted into potential themes and then organised into sub-themes. (4) this step involved reviewing and refining the potential themes. (5) this step involved defining and naming themes and sub-themes, resulting in four overarching themes. (6) texts describing the interpreted meaning of the quotations were created, which were finally discussed in relation to previous research and the theoretical perspectives of Shier’s model of participation and professional discretion.

Ethical considerations

The data collection in the study was carried out in accordance with the WMA Declaration of Helsinki (2013). All participants received written information about the study by e-mail and in connection with the interviews, they received oral information about the procedure. This included information on the rules of confidentiality and on the voluntary nature of participation and that the study did not involve collecting sensitive personal data. Participants gave informed consent by answering an e-mail. In connection with the focus group interviews, the participants were informed that they could not be completely anonymous to each other within the group and were asked to respect this. The study was approved by the Swedish Ethical Review Authority (Reg. no. 2020-01335).

Results

The findings of the study highlight both enabling and hindering factors in terms of efforts to get the child involved in the entire assessment procedure. Consequently, the themes are divided into before, during, and after the actual conversation between social worker and the child. Finally a theme emerges, revealing organisational factors that are contextually important. The results are supported by quotes or passages from the interviews, referred to as focus group (FG) or individual interview with social worker (SW).

Readiness and preparation to meet the child

In accordance with the first stage of Shier's model, the social workers believe they are ready to listen to children in the assessment process and are aware that the CRC has now become law, i.e. meeting the child is therefore part of their job. The administrators have received broad-based training in connection with the CRC becoming law, and they agree that the child should be involved – but have different views on whose responsibility it is. Some claim that it is the social worker's responsibility, others claim that it is the duty of someone at a higher level in the organisation. It is also perceived as an advantage to meet the child individually. Nevertheless, there is uncertainty about whether there is an obligation to meet with the child to carry out an assessment when it is parents or guardians who are applying for their child. Therefore, responsibility is placed with the parents to determine whether the child is to participate.

[…] unfortunately, it is the case that it is the parents who apply for the intervention and according to the SDA, we do not have the right to refuse a parent an intervention because we have not met the child, we can’t do that. (SW3)

Both child and social worker need to be prepared before a meeting. A clear asset for making a child feel involved is for the social worker to obtain information about the child's way of understanding and communicating before meeting with them. By obtaining information about the best way to approach this child, or making other necessary adjustments, the social worker can prepare activities and material to help the child express their views.

Parents can help social workers who want to ensure that the child experiences the meeting as positive. It is also about preparing the child, and it appears that some organisations have special. children-friendly invitations. In other organisations, the social workers write their own letters, addressed to the child, which requires creativity, e.g. for older children it can be about SMS contact or ordinary letters with questions before the meeting. For the child to feel comfortable, it is best to prepare them for the venue – at home or at the social worker's office, physically or digitally, etc. In addition to what will happen during the conversation, it is important to clarify whether the social worker will meet the parents and child together or separately. Under all circumstances, arranging for the child to be prepared improves the child's ability to participate.

I have used my own pictures … taken pictures of what it looks like at the entrance, where they should enter the building … , a picture of what the meeting room looks like so that they know where we are going to sit and a picture of me, the person they are going to meet with. And I have sent that out as preparation on a piece of paper. I simply print out pictures that I have photographed. (FG1)

However, all this preparation takes time that social workers don't always think they have. Formally, one can always make time, but a heavy workload, including administration and documentation, means that the preparation must sometimes be skipped.

I say that 70% is, it's the writing, it's incredible how much sometimes, everything that must be recorded … (SW3)

Another problematic aspect can be the perception that children with disabilities are not comfortable meeting an official and that they already have many contacts with professionals. Some social workers have felt that parents believe their child would be a disturbance during a meeting. In this regard, the choice of meeting venue is important. It is most common to meet at home, since that’s a safe place. But one also needs to think about alternative venues that require preparation, e.g. sitting next to each other in the car or taking a walk. Furthermore, digital meetings can suit older children and children with autism.

[Video meetings] have been suitable because the child can come and go as he pleases in the meeting […] And that it is in the child's home environment, and some may have difficulty making eye contact with us social workers. (FG4)

Content and methods during a conversation with the child

During the actual conversation with the child, great importance is placed on the child feeling comfortable and feeling they can trust the social worker, which is why the conversation often starts with simple things in the child's life, such as topics related to peers, toys, or what is happening at school. However, creating a relationship can be difficult as most social workers say that they only meet with the child once and for a maximum of one hour. Someone even mentions that it is usually about a half an hour per child. Further, ‘small talk’ is most often the only thing allowed, since many social workers believe that they could hurt the child’s feelings by asking questions related to their disability. It is also the social workers’ experience that the parents see their children as fragile and do not want to bother them with this sort of questions. There are therefore social workers who believe that the child should not be involved when questions about the child's deficiencies and need for support are discussed.

… if you think about children who have not understood or ha[d] insight into their own disability. Then there is a lot of focus on what they cannot do and if they are not there, to understand their own disability, they [would] feel bad because they hear what people are talking about. (FG2)

When and if there is no small talk, there is a great focus on the intervention itself. It is also easier to follow-up on intervention-related issues, as that is more concrete for the child. In the case of smaller children, it is usually interventions that relieve the parents and then the conversation mostly concerns whether the child would like to join, or fancies visiting, short-term-stay. Regarding the child's needs, the social workers usually talk to the parents, preferably before they meet the child. If and when they later see the child, they can tell them what the parents said and get the child’s perspective.

For the older children it is more important to note the child’s perspective, but still with a focus on the specific intervention. However, social workers’ experience is that, if they do not have full control of which AAC method they should use for the individual child, they prefer to use ordinary, but simple, speech, which is why most often no AAC is used if the child is at all verbal.

… you can speak in simple terms, ask short questions so that it does not become so complicated, but it is exclusively speech. (FG2)

There are social workers who have tried different AAC tools such as drawing or using explanatory illustrations. Others enlist help from professionals in disability care settings. To some extent, social workers have used different types of special communication tools.¹ However, using any kind of tool requires knowledge of how to use it. Social workers’ anxiety and ambivalence also seem to be a complicating factor. There is a lack of knowledge about, and experience of, using AAC tools, and social workers are afraid of making mistakes, of having to use a tool that the child may not normally use, or of being too childish and hence insulting the child.

If they have black and white Pictogram pictures, it might be weird for them if I take this new model with colourful cartoons. […] But I need to know that so that I don't use the wrong type of communication. (FG3)

This means that the social workers avoid using AAC due to a lack of knowledge or for fear of disturbing the child, which means that the voices of those with verbal limitations are not heard.

… there is a fear of not being SUPER knowledgeable, which prevents many social workers from actually taking the step to use these methods or you may simply be content with having a normal assessment interview. (SW5)

Documenting children’s perspectives and communicating decisions

Some of the interviewees claim that it is up to each individual social worker to find ways to include the child, while others emphasise that it is the organisation's obligation and responsibility to ensure that the child is involved in the decision-making process. However, when the organisational templates are to be followed, the work tends to be relatively instrumental. Some social workers point out that to respond to local policy requirements, they rely on their own routines and experience. The majority state that they are obliged to follow the templates provided by the organisation or that there are special headings in the assessment report – such as ‘the child’s perspective’ – which must be filled in.

Social workerssay they approach these templates quite differently in terms of how closely they are followed, if at all used, and what value they attribute to this policy requirement. Perceptions range from ‘it is good that these headings exist so that it [the child's perspective] is not forgotten’ to more in-depth descriptions of how the social worker proceeded using adapted imagery to capture the child’s needs and preferences.

And we have a heading in this module where there is a ‘child's perspective’, and there I usually give a little presentation of how I have used image support or if there is a special, a schedule or emotional scale, to write a little bit about that, partly when I meet the child and what I have informed them about and what aids the child has received to express himself, and then in the assessment report regarding every area of life, I have written that ‘With the help of image support, it appears that he likes to play ball’ … (SW7)

It is notable, nevertheless, that the social workers have different routines for following up and checking whether the children's voices have been considered in the process. Some state that there is no follow-up whatsoever, while others emphasise that there’s always some form of internal control, such as a selection of assessment reports passed on to the local manager for further review, ensuring that children's perspectives have been considered in the assessment process.

Regarding the social workers’ communication of decisions, the majority use standard, computer system templates and possibly communicate them verbally to the parents. There are, however, instances of creative solutions for including the child in the decision. It is mainly about phoning the child, but also about formulating an extra decision message using simple text and illustrations that enable the child to understand. In some organisations, the social workers have made a template themselves; in another there is a child-friendly template available for decision notification. However, what is missing above all seems to be a way to formulate a negative decision, such as a template for rejection.

Organisational and collegial support

In accordance with Shier's model of participation, special focus has been devoted to the aspects of professionals’ obligations and policy, with reference to the requirement that children be listened to, that children are supported in expressing their views, etc. In principle, social workers say that there are organisational requirements and templates that to some extent guarantee that children’s voices are considered in connection with the assessment interview. But this obligation mainly states THAT children's perspectives should be considered, not HOW.

There is a large variation in to what extent social workers must meet policy requirements. Some stress that they have almost unlimited time – that ‘participation must be allowed to take time’, while others argue that it is a matter of leadership creating the conditions for participation.

… you simply have to be satisfied with a meeting with the parents, and the child is there too, but you don't have time to direct so many questions to the child […] and in other cases, you might be able to devote 15–20 minutes to the child. All in all. (SW5)

But, on the other hand, there are several social workers who express the opinion that time is not only an obstacle. As part of their professional discretion, it is claimed that the use of information materials and templates can free up time.

… this template for an information letter that we have created saves a lot of time, the more you can prepare beforehand, and prepare the parents for the fact that I will need to talk to the child, and I will have to ask these questions, the faster it will go. Time again – good data and introduction to the meeting frees up time. (SW3)

Furthermore, using the template can also be a way to deal with the above-mentioned fear of making mistakes or upsetting the child. Some social workers say that referring to a template makes them feel more confident – that ‘it's easier to have a template to follow, because then it won't really be difficult to ask the question [about difficulties in everyday life]’ (SW3).

In addition to the templates and control routines provided to ensure children’s participation, some of the interviewees emphasise that there are other forms of participation-promoting organisational support. Above all, the importance of continuous method supervision is emphasised, where the social workers through teamwork can share their experiences, talk about feelings of insecurity, a child they cannot reach, or inspirational tips about different forms of communication tools. Through teamwork, where supervision is offered, there is often a more permissive and supportive climate too.

In the spring our team agreed that we could like select two different communication methods and sort of start with them. Because there are so many different methods and it can be a bit difficult to know which one to choose, which ones to focus on? So, we have agreed that half the group will use ‘Cat-Kit’ and half the group will use ‘Tejping’. And then we will test it for a period […] and then we will follow it up and evaluate. (SW9)

To link back to Shier's model, it can be argued that social workers within their respective organisations often appear to reach Levels 1 and 2, in that they are ready to listen to children and they are often prepared to support children’s expression of their views. But to take a further step according to the model, it seems that something more than blindly following templates with associated control systems is required. In the following discussion, we would like to argue that a participation-promoting organisational culture, where issues of leadership and professional discretion play prominent roles, is needed.

Discussion

The results show that enabling factors for enhancing children’s participation are related to the social workers’ readiness and preparation, which make the child comfortable during the meeting. Another enabling aspect concerns management's responsibility for creating organisational conditions that promote creative, participatory initiatives, such as freeing up time for method supervision and shared experiences. The hindering factors mainly consist of the parents’ need for’relief often coming into focus, where the parents’ rights exceed the child's best interests, which is in line with previous research (Gallagher et al., 2012). In addition, social workers highlight difficulties in promoting children's participation that are associated with risks of disturbing or hurting the ‘fragile child’ as well as a fear of making mistakes, e.g. using an inappropriate communication method. In a Swedish context, Hultman et al. (2019) and Engwall and Hultman's (2021) stress the importance of children with disabilities being given the opportunity to air their own perspectives on interventions such as respite care during the decision-making process. For them, it can be more important to live like others. The interviews showed that the social worker's conversations with the children were mostly ‘small talk’ or talk of to what extent the child was satisfied with an ongoing intervention. This can be interpreted as a reluctance to upset the child with troublesome questions instead of genuinely taking an interest in the child's unique situation. The social worker tends to fall into the role of administrator, proposing participation-promoting measures in accordance with intentions found in conventions and legislation, instead of acting as a social worker with a genuine interest in the child's unique needs.

From an international perspective the results are also in line with Vis et al. (2012) who have identified three main hindersto children being allowed to participate in the decision-making process: (1) participation becomes inappropriate because it might be harmful (2) the social worker finds it difficult to communicate with the child (3) participation was not deemed necessary. Even though this study concerned child protection cases, they conclude that improvement of children’s participation within the welfare system’s formal regulations and guidelines needs to be accompanied by better skills in working with children through participatory processes. However, research has shown that there’s not always a consensus among social workers regarding the necessity of children’s participation in every situation. This could be explained by social workers’ varying perceptions of what‘participation’ means. Some put more emphasis on participation as involvement in the outcome of the decision and others on participation in the process (Vis et al. 2012, p. 17). In this context Thomas and O’Kane (1999) stress that respecting children's interpretation of participation does not mean that they ‘must get what they want’, but rather that participation is about ‘being listened to’, ‘being allowed to have their say’ and ‘being supported to express their views’.

Another valid question concerns what it takes to go from Shier's Levels 1 and 2 to Level 3, which is the minimum point a social worker must achieve to endorse Article 12 in the CRC? Within the legal framework of their job, it is the municipality that formally approves or denies an application for support and is also responsible for following up on the decision. Therefore, Level 5 is not relevant in this context. Based on the analysis of the empirical material, we argue that to reach higher levels in Shier’s model, the social worker needs to use their professional discretion. A social worker’s discretion is used to develop ways of relating to service user participation, and in particular, increases opportunities to use new ways of enhancing user voices within the framework of the professional role (e.g. using AAC and/or digital technology in the assessment process). Characteristic for street-level social workers is the constantly present dimension of having a variety of alternatives to choose from. As Taylor and Kelly (2006) point out, the margin of discretion can be related to three different elements: (1) rule discretion (e.g. decision-making bound by legal or organisational restraints), (2) value discretion (e.g. professional codes of ethics or attitudes toward new and alternative ways of conducting assignments) and (3) task discretion (e.g. the prerequisites and abilities to carry out a prescribed task). We believe that the social worker needs to be creative, innovative, and courageous. In this respect, uncritlically following of templates (rule discretion) is not enough. To develop an organisational culture that promotes participation, social workers also need to integrate both value discretion and task discretion. It is important that the organisational culture pays attention to the child's perspective, and to some extent this may only be rooted in policy and regulatory requirements – but there is also a need for management that enables this, that conveys an organisational climate that perpetuates and supports the child as protagonist. There should be communication support materials, supervisional meetings focusing on methods for the child's participation – rather than a legislative interpretation and current legal cases – and control systems.

This raises questions about what individual responsibility can and should be placed on the individual social worker as well as what responsibility and obligations the organisation has to take into account in terms of policy, rules, and guidelines. We believe that Shier's model invites such an organisational contextualisation of issues concerning children's participation in their encounters with welfare organisations. This leads to questions about the reasonableness of all social workers being obligated to learn a plethora of AAC. To what extent does AAC actually contribute to real participation in the process – not just ‘giving the child a voice’ (Lundy, 2007)? Therefore, organisations need to create conditions for both relationship building and continuity in order to promote children's participation in the process that leads to decisions on disability support. Introducing some form of AAC that works and is easy to use is one way of doing this. Creating an inspiring and permissive organisational culture is perhaps more important than actual knowledge of different AAC methods – all social workers do not have to be SUPER knowledgeable.

Conclusions and implications for practice and research

In conclusion, we would like to point out that it is relatively common for children who need support according to SDA also to need AAC. Many have individual tools, and it is completely unreasonable to expect every social worker to know all the AAC methods. To reach higher levels in Shiers model, it would be appropriate for social workers to let go of the ambition to adapt a wide range of materials and methods of communication to the individual child. Nevertheless, everyone can use something. Even if it is not the most perfect method for the child, it is a gesture that the meeting is adapted to a child, and this can create security for the social worker who can instead focus on making the child feel comfortable. However, it is important to be aware that it is a heterogeneous group of children with disabilities that the social workers meet and refer to, i.e. children with varying needs, different ways of communicating, and who have different socio-economic backgrounds, etc., which is clearly a challenge for social workers and may have influenced the results of this study.

Consequently, it is important both before, during and after the assessment process to have access to and knowledge of illustrated information letters before the meeting with the child, to have a set of basic images linked to what is to be assessed and an illustrated decision message that can be used when decisions are to be communicated with both the child and the parents. Furthermore, one way to present these support materials to the child in a safe and non-stigmatising way is to do it in terms of ‘this is what we do with all children’. Social workers say that lack of time is an aggravating factor, but on the other hand there is the experience that solid material and adequate templates can also free up time for increased focus on conversations with the individual child. There is, however, also a need for future research to investigate whether child-adapted and specially designed information materials really work. This can, for example, be done by adopting an intervention study design.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Swedish Research Council for Health, Working Life and Welfare: [Grant Number 2020-01335].

Notes on contributors

Elisabet Björquist

Elisabet Björquist, PhD in Medical Science – Disability Research and senior lecturer in Child and Youth Studies at University West. She has a research interest in social participation for children and youth with disabilities.

Stina Persson

Stina Persson, Master Degree in Social Work, university lecturer and research assistant at University West. She has an interest in social legislation within the field of disability.

Martin Molin

Martin Molin, PhD in Disability Research and Professor of Social Work at University West, has a research interest that focuses on social participation for young people with intellectual disabilities in different contexts.

Notes

1 Communication tools such as Tejping (using small dolls as visual representation), Pictogram (a visual language consisting of black and white illustrations) or Cat-Kit (Cognitive Affective Training, a method for inspiring and structuring conversation between people on thoughts).