Negotiating the Administrative Burden: The Navigation of Welfare Services by Parents with Disabled Children

Coordinators and Welfare Services

Coordinators are service providers assigned to users who require long-lasting and comprehensive services (Norwegian Directorate of Health 2018). The coordinator system, which is regarded as a type of healthcare service, is part of the rehabilitation and habilitation services and is organised by municipalities. Each municipality has a ‘coordinating unit’ responsible for appointing, training, and supervising coordinators. Coordinators are supposed to be the closest collaborators to users, and their next of kin in ensuring that services are continuous and coordinated. The coordinators’ prime task is to arrange coordination group meetings, which bring together parents and professionals involved in the child’s life in different ways (e.g., teachers, physiotherapists, general practitioners and specialists from hospitals or advisory units). In the meetings, the participants usually discuss whatever happened during the previous six months and set aims for the next period. However, coordinators do not have any authority to grant services, as this is done by municipal case managers, specialist health services, or schools. Users and their families must apply for a coordinator.

Using the same dataset as this article, Albertini Früh et al. (2023) found that assigned municipal coordinators are usually professionals employed municipally as physiotherapists or school nurses. They perform their responsibilities as coordinators in addition to doing their regular full-time work. Coordinators argue that they often lack the time, resources, and competencies to provide equivalent and satisfactory services to families. Coordinators are often stretched between high demands and limited resources, and struggle to interpret their roles (Tveit & Cameron 2013; Albertini Früh et al. 2023). Bekken et al. (2021) found that a lack of time and resources requires other professionals in habilitation services to provide users with a ‘realistic’ understanding of what users can expect from public services. Nevertheless, there is limited knowledge of how the coordinator arrangement is implemented and experienced by parents of disabled children and coordinators in Norway.

Families with Disabled Children and Welfare Services

A growing body of research in disability studies suggests that the challenges and frustrations faced by parents (especially mothers) with disabled children stem from interactions with welfare services, rather than from their children’s impairments (Runswick-Cole 2007; Nowak et al. 2013; Kittelsaa & Tøssebro 2014; Barr et al. 2021; Østerud & Anvik 2023). This seems to be the case across states and welfare regimes. In a large research project on families with disabled children in Norway, Kittelsaa and Tøssebro (2014) found that parents are frustrated by the lack of access to information concerning available support, the fragmentation of public services, and how support depends on the civil servants they encounter. Gundersen (2012) argued that the contradiction between parents’ expectations of the welfare state and the everyday reality they encounter leaves parents feeling that the state is working against them. Skagestad et al. (2023) argued that in Norway, stigmatisation and marginalisation can pose challenges for disabled youth and their parents in dealing with services that other parents of children of the same age do not face.

Green (2007) found that mothers in the US described their ‘burden of care’ as relating to objective burdens (e.g., time-consuming contact with medical services) rather than emotional distress (e.g., embarrassment, guilt, resentment, entrapment, and emotional upset). She also found that perceived stigma towards individuals with disabilities, in general, was related to an increase in mothers reporting both higher objective burdens and emotional distress. Furthermore, Traustadottir (1991) in Iceland and Blum (2015) in the US showed that the caring role of mothers of disabled children involves advocating or acting as ‘vigilantes’ for their children in meetings with health and education professionals. Blum (2015) also argued that navigating welfare bureaucracies may be particularly hard for working-class single mothers and women of colour. However, she concluded that even families with considerable class advantages have little authority to confront authoritative discourse and specialists in educational and medical systems. In Norway, Jacobsen (2023) showed that levels of cultural capital matter in institutional interactions because it helps users know when and how to pick their battles. Mladenov and Dimitrova (2022) used the concept of epistemic injustice to show how parents of disabled children are constantly undermined and deprived as epistemic peers (i.e., they suffer epistemic injustices) in meetings with professionals by having their statements understood as less credible than the statements of professionals. Ryan and Runswick-Cole (2008) argued that parents of disabled children operate within a narrow and inflexible system of benefits, allowances, and access to resources. This system enforces perceptions of disability as negative and undesired, which, in turn, mirrors the dominant views of disability within society.

Conceptual Framework

In summary, a body of research has focused on parents’ (especially mothers’) exhausting experiences and objective burdens in facilitating services for their children. In this article, I wish to build upon previous research and continue to theorise this ‘objective burden’. I argue that the high involvement of parents in acquiring and customising services for their children mirrors what Herd and Moynihan (2019) termed an administrative burden. This notion enables us to conceptualise and distinguish between the costs of dealing with bureaucracies. Herd and Moynihan (2019) argued that dealing with bureaucracies comes with different costs arising from individual experiences of interacting with the government. First, learning costs arise from engaging in processes to collect information regarding public services, such as which services are available and what the associated eligibility criteria are. Second, compliance costs are the material burdens associated with following administrative rules—which require filling in forms or providing documentation—and the time lost in meetings and waiting for services. Third, psychological costs include a sense of loss of personal power or autonomy in interactions with the state or the stress and frustrations of dealing with administrative processes (Herd & Moynihan 2019).

In Norway, the state has acknowledged that parents face an administrative burden by implementing the coordinator arrangement. Parents’ costs related to the coordination of services should be reduced through the help of coordinators. To understand how these coordinators help parents tackle their administrative burden, I use the concept of negotiated discretion (Johannessen 2019). The concept is based on Lipsky’s concept of street-level bureaucracy (Lipsky 2010). Lipsky (2010) used a bottom-up conceptualisation to understand how public policy is translated into practice and the discretionary decision-making of bureaucrats. Lipsky (2010, 1980, p. 3) defined street-level bureaucrats as those who ‘interact directly with citizens in the course of their jobs’ and ‘have substantial discretion in the execution of their work’. This discretion in how they operate does not imply the absence of rules and regulations, but suggests that there is room for their judgment. Building on Lipsky, Johannessen (2019) argued that the discretion exercised by frontline workers cannot be understood as separate from the people with whom they interact. He used the concept of negotiated discretion to show how decisions between street-level bureaucrats and clients are often negotiated. He argued that we should approach street-level policy as an interactional accomplishment rather than focusing on bureaucrats as the sole agents of policy. Shifting our attention to negotiations enables us to better grasp the power dynamics of street-level encounters by acknowledging the boundaries drawn by coordinators and the role of the client’s resources and assertiveness in these negotiations (Johannessen 2019). Johannessen (2019) also used the concept of negotiation context (Strauss 1978), which links negotiations to their broader context and the local conditions that shape them. Strauss (1978) highlighted different contextual conditions, but this article mainly focuses on the relative balance of power between negotiators (i.e., between parents and coordinators). The discretion of coordinators–who have no authority in granting services–relates to how involved they should be in coordinating services and helping families. By combining the concept of negotiated discretion with the concept of administrative burden, I wish to explore both the roles of families and the roles of coordinators while investigating families’ objective burdens.

Parents’ Perspectives

All the parents in the study wished for someone who would make their lives easier by informing them of their rights and available services and assisting them with writing applications for services:

I wish there was someone who could assist me with all this, because the problem is that my daily life is rather exhausting and rough, so being stuck with these applications during the night is truly burdensome. I wish there was someone who said, ‘Okay, you have the right to these services, we will help you apply’, and I could just sign the paper. (Isabella)

Although the participants had different administrative burdens, they all argued that these burdens were an exhausting aspect of their everyday lives. Parents spend considerable time searching for information related to the availability of welfare services and their rights to and eligibility for these services (i.e., they face learning costs). Moreover, parents spend time applying for services, specifically writing applications. This involves providing documentation to support their requests and demonstrate their children’s level of function. Furthermore, applications are often denied, leading to extra time spent writing appeals. Parents also attend various meetings that require preparation and follow-up work. All of these tasks increase parents’ compliance costs. Moreover, most parents find these processes frustrating, particularly regarding their interactions with and applications for municipal services, such as relief services and personal assistance. The participants explained that they are often frustrated with the procedures (which they often considered arbitrary and discriminatory), and not necessarily with the services themselves. Several of them also stated that they had to downplay their children’s functional abilities when applying for services, which requires focusing on the negatives rather than the positives, to have a better chance of being granted the services. At least two of the participants avoided pursuing further services because they felt that their fight for additional services had come to a standstill. They argued that the stress and frustration they encountered during the process outweighed the potential gains from engaging in further battles. To different extents, all the parents faced learning costs, compliance costs, and psychological costs related to facilitating their children’s services.

The participating parents relied on their coordinators to tackle their administrative burdens. However, the parents varied in their interpretations of the coordinator role. Anita argued:

In the beginning, I had greater expectations of my coordinator. … She is very good at leading coordination group meetings. But I expected that she would be a little proactive in discussions with parents. (Anita)

Anita understood the role of her coordinator as being somewhat limited. Her expectations shifted after she realised that the coordinator had taken on a restricted role regarding involvement in her child’s services. The parents often related their expectations to their experiences and how their coordinator drew lines regarding the coordinator’s involvement. For parents, the initial period after being granted a coordinator was usually spent figuring out what to expect from the coordinator and negotiating the coordinator’s level of involvement. However, when parents had a coordinator for a longer period, the relationship usually became established after the initial period. Camilla’s expectations of her coordinator’s involvement also were low. She explained how she had attempted to negotiate their involvement:

I have, for the most part, coordinated things myself…. I have never really experienced a coordinator who has taken any initiative. I have tried plenty of times to delegate tasks but have been met with the argument that I should address the service myself since I know the situation best. (Camilla)

Camilla had attempted to get her coordinators more involved several times. For example, she had asked for support in obtaining personal assistance for her son and wished for someone to help her find the best strategy to apply for the service. Finding the best strategy involves a mix of learning costs and compliance costs, because parents must spend time learning how to apply for the service and then applying for it (and, perhaps, appealing the decision). For parents, learning and compliance costs are usually combined and are difficult to separate into different processes, as they must learn the correct way to comply. In the two examples above, the coordinator drew clear lines of involvement, usually limiting their involvement to arranging coordination group meetings. Thus, the mothers’ expectations about having more proactive coordinators were discarded. The coordinators drew these boundaries to prevent themselves from becoming involved in longer processes of service acquisition—processes that involve a mix of learning and compliance costs for parents.

However, other parents had higher expectations of their coordinators. Ingrid told us that she contacted her coordinator regularly. She was planning to apply for a support contact for her son and explained that she contacts her coordinator whenever she needs more information: ‘If I need help with anything, I call my coordinator and ask her. I expect that she will help sort it out’ (Ingrid). She expected her coordinator to be involved in the everyday navigation of welfare services and to help her with the learning and compliance costs of acquiring a new service. Ingrid described herself as assertive and explained that she often requested high involvement from professionals. By being more assertive, she negotiated a higher degree of involvement from the coordinator. Another mother, Nora, argued that her coordinator was essential to her:

She [the coordinator] has helped me with multiple applications and appeals, with things at the hospital, with the school and with the municipal service office, which we have had big problems with. And she has done much of the talking…. She does much more than is expected of her. (Nora)

Nora explained that her coordinator stands by her side in tackling the loss of autonomy and stresses of attending tough meetings with other professionals. She is grateful and advised that her coordinator does not need to help her so comprehensively but that the coordinator does it out of sympathy and care for her. The practical and emotional support she receives from her coordinator helps her tackle the psychological costs of her administrative burden, as well as the learning and compliance costs. Nora does not describe herself as assertive but is grateful for her coordinator. By being grateful, she reinforces their good relationship.

However, not all parents reported that they had their coordinator on their side in their struggle for services. Those who understood the coordinator’s role as limited considered their coordinator a neutral figure rather than their advocate. However, parents were seldom frustrated with their coordinators per se; rather, they were frustrated with being refused services and with the lack of flexibility in the services they had. One mother reflected on the role of her coordinator in the greater health and welfare system: ‘When the municipality is not willing to grant anything, there isn’t much that she [the coordinator] can do either. It’s not that she hasn’t tried’ (Benedicte). According to this mother, troubles arise from not being offered appropriate services. She argued that her coordinator has attempted to help her, but the problem is that the municipality does not provide the services she requires. Although the parents were frustrated with ‘the system’, they usually recognised the role of coordinators in the larger welfare system and understood that the coordinators had limited influence over decisions regarding services. The way parents considered their coordinator in relation to their psychological costs depended on the extent to which they believed the coordinators had their backs when facing the system.

Although parents often experience being at the mercy of their assigned coordinators, they have different lines of flight (Goodley 2007). Lines of flight is a concept used by Deleuze and Guattari and adopted by Dan Goodley to understand the parents of disabled children’s ways of escaping narrow framings of their situation. Marianne told us that her child had recently been assigned a new coordinator who was hesitant to take on the task and subsequently went on sick leave. After a couple of months of attempting to get in touch with the municipality to acquire a new coordinator, Marianne wrote a complaint:

I wrote about what I was discontented with and explained that we wanted a new coordinator. And I wrote a little threat [laughter] that if I didn’t get a reply before a certain amount of time, I was going to contact the county governor because that’s my right…. And then my request went through. (Marianne)

After this, she was appointed an experienced coordinator with whom she had regular contact. In the last interview, we asked her about her current relationship with her coordinator, and she replied, ‘I was at a place where the coordinator simply didn’t work, but then I wrote a complaint and got the best!’ (Marianne).

Parents were free to terminate their coordinator arrangements at any time. During our fieldwork, Camilla and Benedicte terminated their coordination groups and stopped collaborating with their coordinators without applying for new ones. Benedicte argued that the meetings were often used to simply update the coordinator on their current situation. Both argued that they received limited support (which both had attempted to negotiate) from their coordinators and argued that it was less burdensome for them to contact the service providers directly. Their children were also older, implying that they knew the welfare system better than parents with younger children and had already established what services they could receive, hence limiting the need for a coordinator.

Coordinators’ Perspectives

Coordinators recognise parents’ stories of high administrative burdens. They argue that these families have a lot on their plates and need support from the public. However, one of the issues they discussed most frequently amongst themselves was regarding when to get involved and when to leave tasks to the parents:

Some might want help with absolutely everything, but where do you draw the line between your role and what the parents in fact have to do themselves? (Physiotherapist, interview)

The coordinators varied in the extent of their involvement and interpretation of their roles. However, a common perception was that being a coordinator means, at the very least, being a person that families can easily contact with their questions concerning health and welfare services. One coordinator argued, ‘In general, I think a coordinator should be someone they can call if they have questions or need help with anything’ (occupational therapist, interview). Parents are involved with a range of services, and having one person they can contact regarding their questions and concerns is valuable. However, since most coordinators are health professionals, they are seldom familiar with which welfare services are available to families; this implies that they also must learn how to navigate the system. Coordinators agree that part of their job is to help families with the learning costs of having a disabled child. However, the coordinators vary in their interpretation of whether their professional obligations extend beyond providing families with information:

It’s not like we have to do everything and make every call. I think that our role could sometimes be to find out where the parents can call and assign responsibility to the parents by saying, ‘We can help you with this, but you have to reach out yourself’. (Physiotherapist, focus group)

Several coordinators claimed that the best way to help parents was to teach them how to navigate the system. They believed the best way to do this was to let parents do most of the work themselves. The interpretation of what work belongs to coordinators and what tasks are parental obligations shifted towards assigning more responsibilities to the parents. This theme was discussed in a focus group:

Physiotherapist: I have the impression that we sometimes create passive parents. This can lead to increased helplessness, where the parents just argue that we can do everything and repudiate their responsibilities….

Interviewer: Why is it important that families have the responsibility?

Physiotherapist: It is multifaceted. First, it’s not like you have a coordinator for the rest of your life. You actually need to fix the basic things yourself. And we know that for these families, this is much more comprehensive, and we get it. However, if we as coordinators should do everything for the parents, then the role of the coordinator needs to be expanded substantially because we don’t have the time and capacity to do it. And I don’t know if it is right to do everything for the families, either. (Physiotherapist, focus group)

Thus, it is evident that with their current resources, it is not possible for them to help families extensively. However, as noted in the excerpt above, this is also a normative question of accountability and self-reliance. The cited coordinator argued that parents need to be accountable for their children, and by doing too much for the parents, the coordinators are doing them a disservice. Being accountable for facilitating services for one’s child is regarded as normal parental work. The coordinator believed that by not enabling parents to learn to navigate the system, they may create passive users who are unable to get by without assistance. The administrative burden, particularly compliance costs, was part of what this coordinator deemed ordinary parental responsibilities.

Some coordinators were more hands-on in working with families. These coordinators declared that they often worked extra hours to help their families. They carried out tasks beyond providing information, such as helping families with applications or contacting other professionals. One coordinator claimed:

I think I am more involved with these children than I should be. For instance, I tell the parents, ‘Just sign this paper, and I will apply for you’. And I am rather kind to a fault, but I have to be. (School nurse, interview)

This coordinator argued that she often goes beyond the scope of her role to provide support for families, including helping them with applications. Her rationale for doing so was that she was a nurse by profession, and she reported that she is an exceptionally caring person, bordering on “being naïve”. She did not argue that tasks such as writing applications are not the responsibility of parents. Her argument was that although these tasks are part of parental responsibilities, these families need extra support because they have too much on their plates.

Furthermore, the coordinators acknowledged the psychological stress these families face when navigating welfare bureaucracies. Several argued that parents are ‘overwhelmed’ or feel ‘let down by the system’. However, the coordinators varied in how they supported families in dealing with the psychological costs of their administrative burdens. The head of a local coordination unit, who is also an experienced coordinator, elaborated on how it is important for coordinators to remain neutral even though they might agree with a family’s frustrations. In supervising other coordinators, she often advises them as follows:

To be a coordinator is to be a neutral person. In the first meeting, you sort out expectations. Some will typically go, ‘Poor family, they have no services and way too little relief—ugh, it’s awful’. Thus, as a coordinator, it is important not to get carried away. Because if you promise something on behalf of the municipality, it can put you in a squeeze. (Disability nurse, interview)

She argued that being too supportive of families by agreeing that they receive too little can put coordinators in a position where the families become even more frustrated and lose trust in the coordinator if the service is not granted. The fact that these coordinators have no resources or power to grant any services but are the frontline representatives of the system puts them in a squeeze. This Janus-faced nature of the coordinators is boosted if parents are dissatisfied with the services provided to them. However, other coordinators argued that the most crucial feature of their role is to support families emotionally and relationally in navigating the concerned systems, even though they may go against the rest of the municipal system:

In my cases, it has been about fixing the relationship with the municipality; they hate us and everything we haven’t done…. It feels like they are at war, and I am trying to be the negotiator, and they become known as ‘that family’. But they are only ordinary people who are experiencing a crisis and maybe say some wrong things, and things get out of hand. (Special education teacher, focus group)

Furthermore, coordinators see their roles as interconnected with the rest of the welfare system. Being more familiar with the available services than most parents, several coordinators argued that a central aspect of their job is to guide parents’ expectations regarding what it is possible to achieve. One coordinator described her role in the following manner:

You are an important ally for the family but also a person who can tell them what is not possible to achieve. Because we receive some requests where there is a huge gap between expectations and the here and now. Unfortunately, our role is often that of providing families with realistic expectations about what they can achieve, and that is perhaps the worst part of the job. (Physiotherapist, focus group)

Parents often have expectations regarding the level, flexibility, and processing time of available services that coordinators feel are unrealistic. Hence, they need to guide parents’ expectations towards what is possible to achieve in terms of the provision of services. By attempting to create realistic expectations among parents, coordinators hope to limit psychological costs as the gap between expectations and reality is reduced.

Furthermore, some coordinators argued that how they are involved is often related to the characteristics of the families they serve. The coordinators described how they enjoyed working with families that were grateful for the work they put in. The coordinator working with an immigrant family with limited Norwegian language skills, reported that she enjoys working with families who ‘do not only see the negative stuff’:

Obviously, it is easier when someone is grateful and you are not just getting yelled at. I care, and I have always been told that in my job as a nurse, I care especially for vulnerable families and those who struggle more than others. I am very engaged in helping others and when they also are grateful, I think, ‘Okay, this is time-consuming, but it means the world to them’. (Nurse, interview)

This coordinator describes her relationship with the family. They were rather grateful for the help they received. The coordinator argued that helping vulnerable families is particularly important to her. However, other coordinators argued that families differ in their expectations about their coordinator’s involvement and that families with fewer resources struggle to get the help they need:

Undoubtedly, those with more resources are better at using me and the available services than those who don’t know about the services or are not used to standing up for getting these services to the same degree. They are less visible and disappear a bit. (School nurse, interview)

She argued that those with more resources, such as economic resources or a higher education degree, contact her more often to acquire support in tackling their administrative burden. By contacting her more frequently, they may receive more support during the administration of their services and obtain better services than parents with a lesser sense of entitlement.