Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance

Abstract

This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.

Keywords:

• Personal assistance
• disabled children
• case workers
• decision making
• professionalism
• grounded theory

Points of interest

•	We present research findings on Swedish case workers responsible for performing the social need assessments that precede decisions about disabled children’s access to personal assistance.
•	Current assessment criteria, combined with the utilization of precedent rulings, make it difficult for the case workers to provide disabled children access to personal assistance.
•	The presence of medical certificates, combined with the assessment of basic needs, has contributed to emphasizing a medical discourse that promotes functionality and care needs at the expense of social needs.
•	We consider the case worker’s experience of exercising authority and discuss this in relation to perspectives of professionalism.
•	This type of research is important because it contributes to heightening awareness of the adverse consequences of current practice.

Introduction

In order to enable independent living and inclusion in the community, article 19 in the United Nations Convention on the Rights of Persons with Disabilities (2006) requires states to provide personal assistance (PA) services. Scandinavian countries have adapted to the Convention on the Rights of Persons with Disabilities to varying degrees. In Sweden, PA is regulated in a special rights law, the LSS Act, while Denmark and Norway have incorporated PA in existing social and/or health legislation (Christensen, Guldvik, and Larsson 2014). What distinguishes PA from traditional care support is the explicit objective of user control, which implies the right to self-determination regarding service provision (Askheim, Bengtsson, and Richter Bjelke 2014).

According to a recent national report, PA has entailed an improved quality of life for many disabled children, leading to a richer life and greater opportunities for children to participate in activities on their own (National Board of Health and Welfare 2014). PA has also led to better health for the entire family and the parents’ overall assessments indicate that PA is perceived as invaluable support (National Board of Health and Welfare 2014). The responsibility for making decisions about access to PA is governed by the Swedish Social Insurance Agency (SSIA) and the local municipalities. PA is regulated by two laws, the LSS Act (1993:387) and the Social Insurance Code, Chapter 51. PA is available for basic needs and additional needs. The LSS Act defines five basic needs, which include support for personal hygiene, meals, getting dressed and undressed, communication, and other assistance that requires thorough knowledge of the disabled person (SSIA 2015). The municipalities are responsible for the cost of basic needs that amount to less than 20 hours a week, while the state and the SSIA are responsible for the cost of basic needs that exceed 20 hours a week.

The LSS Act is often described as aiming to strengthen the power of the individual (Grassman, Whitaker, and Larsson 2009), but a strong legal right is not a guarantee that rights are provided to the user; the rights still have to be claimed (Lewin, Westin, and Lewin 2008). In order to receive PA, the person in need of assistance has to request it. In the case of disabled children under the age of 15 years, the formal application for PA has to be sent in by the parents or a proxy.

In line with increased demands of global austerity, the restructuring of social security benefits for disabled people has become a dominant theme in international policy (Grover and Soldatic 2013). New organizational models have been introduced in public welfare services (Hood 1991) influenced by neoliberal ideology associated with economic liberalization policies such as reductions in government spending and deregulation of the market (Goodley, Lawthom, and Runswick-Cole 2014).

Although successful, the Swedish assistance reform has raised recurrent concerns regarding increased cost development. Already in 1995 it was proposed that children under the age of 16 years should be excluded from the right to obtain PA because their need for support should be provided by their parents (SOU 1995/96:146). The proposal was not adopted at the time but the discussion about parental responsibility has reappeared as an argument to limit the authorities’ responsibilities and transfer them back to the parents (SSIA 2017, 8).

In Sweden a continuous erosion of the assistance reform has taken place since 2009, a trend which has been intensified since 2014 (Altermark 2017). The emergence of case law has increased the utilization of precedent rulings in the decision-making process concerning access to PA. Precedent rulings are indicative, but they must be interpreted and applied with regard to circumstances in each individual case (Bondesson 2017). Two judgements from the Supreme Administrative Court (Högsta Förvaltningsdomstolen) has resulted in fewer people being entitled to assistance compensation for the basic need other assistance that implies thorough knowledge of the disabled person (Högsta Förvaltningsdomstolen 2012, 2015). At the beginning of 2016, the Swedish government formulated a directive to the SSIA, in which the authority was instructed to prevent the increased cost development of PA (Government Offices 2016).

The rejection of PA applications in Sweden has grown, from 59% in 2012 to 79% in 2016; that is, by one third in five years (SSIA 2017, 8). In 2017, the total number of assistant users declined from 16,200 to 15,550 persons (Assistanskoll 2017). Children and people with intellectual disabilities are the two groups for whom refusal of assistance compensation has increased the most (SSIA 2017, 8).

Swedish social workers perform their work under increasingly tough conditions, doing a demanding job (Tham and Meagher 2009). The social worker’s duties consist of investigating, assessing and deciding about applications for support (Lipsky [1980] 2010). There is a transitional trend to standardize social work, resulting in an increased use of manuals for investigation, which guide professional decisions (Ponnert and Svensson 2016). Many researchers claim that this development has led to a reduction in professional trust and that work is now mostly governed by organizational and bureaucratic ideals (Evetts 2009; Munro 2011). Social work is a practice where the constantly changing needs of service users requires a high level of professional flexibility and discretion in order to fit various needs. Thus it seemed important to explore the experiences of social workers responsible for investigating disabled children and adolescents need for support.

The present study is part of a larger study with the overall aim of exploring social workers’ perspectives on various aspects related to the decision-making process that enables children and young people to live with PA.

Method

A classic grounded theory analysis (Glaser 1978, 1998) was performed on interview data collected with the aim to discover how participants resolve their main concern. The results presented are conceptual hypotheses explaining patterns of behaviour generated from the empirical data in the substantive area (Glaser 1998; Glaser and Strauss 1967).

Sampling and participants

The sampling decisions for the initial data collection through focus group interviews were based on the general subject area (Glaser 1978) of the decision process regarding access to LSS interventions that include PA. The social workers came from different regions, representing both rural and urban communities in Sweden. The sample in this study was homogeneous as regards gender and ethnicity; academic women predominated, which is reflective of the situation in the social work profession. This could indicate that the values and norms reflected in the discussions are representative of this particular group and might have been different if case workers with a different ethnic background and gender had been represented to a higher degree. The groups consisted of four to seven participants, a total of 34 women and one man. Their individual experience of working with LSS legislation ranged from zero to over 10 years within the occupation. Fourteen of the 35 social workers had more than 10 years’ experience of working with LSS legislation. Sixteen of the social workers had a university degree with a major in social work and 13 had a university degree with a major in other social and behavioural sciences. Twenty-seven of the participants had previous experience of working in different positions and different occupations in relation to people with disabilities.

The theoretical sample, which corresponded to the need to incorporate more data relevant to the emergence of new categories and properties (Glaser 1978), consisted of 11 individual interviews with female administrators at the SSIA. Information about their educational background was not reported. All of the administrators at the SSIA had more than 13 years’ experience of working with assistance allowance.

Data collection

Seven focus group interviews were conducted with 35 municipal social workers responsible for making decisions about children’s and young peoples’ access to different types of LSS interventions. The focus group interviews were performed by two of the authors (L.H. and U.F.) and another researcher (A-M.Ö.). One researcher had the main responsibility to act as a moderator and initiate a group discussion. Meanwhile, the other researcher wrote down the social workers’ initial statements connected to their place at the table, so their voices could be recognized on the audio recordings. The researchers shared responsibility for asking probing questions in order to clarify statements or engage all the participants in the ongoing conversation. The interviews began with open questions to explore social workers’ experiences of children and young peoples’ involvement in meetings preceding different support interventions regulated in LSS legislation. However, since the emphasis was on discovery and exploration, the group approach was not strictly structured (Morgan 1998).

The focus group interviews were audio recorded and transcribed. They lasted for two or three hours and were conducted in February–June 2016. The study was approved by the Regional Ethical Review Board (2012/671/31-5) and participants were informed of the overall aim of the study.

The individual interviews were semi-structured telephone interviews, carried out by staff at the internal department for analysis at SSIA. They lasted for 60–120 minutes and were conducted during 2015. The interviews were transcribed verbatim. Since both focus group interviews and individual interviews were performed in Swedish, the quotes were translated into English. The individual interviews were performed in response to a governmental request directed to the SSIA, in which the government commissioned the SSIA to analyse and report on why both the number of people and the number of weekly hours per person had increased (SSIA 2015). A supplementary ethical permission was granted to use these interviews in the analysis (2017/207/786-32). Although the individual interviews were performed for a different study, we were able to use them since the open-ended design of the questions encouraged the administrators to share their experiences and perspectives.

Data analysis

When the social workers in this study talked about their experiences of children’s participation, they considered that meetings about PA were very different from meetings regarding other types of support interventions. Thus, data about PA from the focus group interviews were sorted out from the rest of the data. As a first step, open coding was performed on these interview data in order to discover the participants’ main concern, the core category and related categories (Glaser 1978). Thereafter, selective coding was performed on all data from the focus group interviews. The sampling process was guided by the emerging theory and when the category, struggling with the division of responsibility, emerged, we decided to involve the other authority responsible for investigating and administering PA. Selective coding was conducted on the transcribed data of interviews with administrators at the SSIA.

Throughout the analysis, memos were written about categories and their properties. Data were analysed using the constant comparative method of grounded theory. During the sorting of memos and writing-up of the manuscript, literature was used as additional data in the discussion.

In this study, the participants are referred to as case workers when they represent both authorities; that is, the SSIA and the municipalities. When it is important to make a distinction between representatives from the different authorities, staff from the SSIA will be referred to as administrators and staff from the municipalities as social workers.

Limitations

When the theoretical sample was performed, unfortunately we were not given permission to interview the administrators at the SSIA. However, we got access to individual interviews performed in 2015. The impact of precedent rulings has increased since 2015, so it is most likely that the administrators’ perspectives would have been different today from what they were when the data were collected. While this is a limitation of the study, we still believe that their answers are an important complement to the social workers’ perspectives.

Results

Maintaining professional integrity is how case workers are trying to resolve the main concern of struggling with compromised professional integrity. Case workers perform the social investigation for children applying for PA under constantly shifting conditions and recurrent changes.

Maintaining professional integrity

Professional integrity is about being able to perform the professional duty in a correct and objective way; in this case, doing the social investigation which is largely based on the social needs assessment. The case workers are maintaining professional integrity by applying different strategies, which can be divided into the following categories: struggling with the division of responsibility, bureaucratizing, and justifying and protecting (Figure 1).

Figure 1. Theoretical model of maintaining professional integrity.

Struggling with the division of responsibility

In order to maintain professional integrity, responsibility is clarified. Struggling with the division of responsibility includes defining limits for discretion, which either implies transferring responsibility to other authorities and stakeholders or adapting to a top-down agenda.

The struggle with division of responsibility is facilitated by collaboration. However, workload/time pressure might lead to a decrease in collaboration. The case workers perceived that they previously collaborated more with each other.

When neither collaboration nor division of responsibilities occurred, or occurred too late, this might lead to double work and that the work performed becomes meaningless. The case workers expressed frustration about the current construction of decision-making about PA. They believed that there should be one authority responsible for PA:

In 2010 when the law was changed, I wished for one main authority, and it’s from a user perspective – it’s better for the individual to have one authority to relate to, it would facilitate it for them in every way. (Group 2, social worker 2)

Transferring responsibility

Struggling with the division of responsibility is resolved by transferring responsibility to other stakeholders. In this study responsibility was transferred to authorities or parents, thus referring to it as parental responsibility. Transferring responsibility requires the categorization of individuals in order to identify the appropriate authority or stakeholder. When a person is categorized as, for example, disabled, it becomes possible to identify and relocate responsibility to someone else:

The other day, I had such an extreme case, with IfO [the family unit] … It was difficult to make a diagnose because the surrounding situation was not particularly optimal or stable, maybe he had a developmental disorder … And then a social secretary came to me who thought ‘this’ must be an LSS case. (Group 5, social worker 5)

Just because you get a diagnosis, it doesn’t have to be an LSS intervention. It may as well be the mother, who needs the support, just the mother, and not this boy … (Group 8, social worker 4)

Even in situations when the social workers considered that the entire family’s health was at risk, staff at the family unit (IfO) were sometimes unwilling to provide support since they related all family problems to the disability:

And it’s interesting that you say that [the sibling’s need] is part of the assessment, because we don’t take that into consideration. We think we shouldn’t do that because the LSS legislation is so inflexible, it’s solely that [disabled] child’s need – one can only assess their assistance. (Group 2, social worker 2)

A reason for transferring responsibility was the increased workload, due to a growing number of applicants ‘waiting for the insurance agency to make its decision, for one doesn’t want to make any decisions before … would they give …’ (group 1, social worker 4). Another reason was the perceived pressure to save money:

Thus the big change is that previously, the feeling was that the municipality took more responsibility. There used to be a better cooperation. Today I get the feeling that the municipality has to save [money], trying to pass it to the Social Insurance Agency. (Administrator 9)

A third reason for transferring responsibility was that it was not within their area of responsibility. To provide emotional support and help parents cope with their emotions was considered the responsibility of habilitation units, which were specialized in providing support with physiotherapy and technical aids, as well as providing emotional support to disabled children and their families.

Adapting to the top-down agenda

Adapting to a top-down agenda is a strategy for handling the division of responsibility. By referring to rules and regulations, the individual case worker did not have to take full responsibility for the outcome of the decision since they could refer back to the interpretation of the law or the standardized use of guidelines.

All of the case workers claimed that they had to act according to local or central guidelines which in many cases were based on interpretations of precedent rulings from the Supreme Administrative Court. Many of the social workers claimed that their decisions had to be consistent with decisions made by administrators at the SSIA, and if they made decisions that deviated from guidelines or court rulings they had to be confirmed on a higher level:

Many times we do the same [as the SSIA]. It is the Parental Code that controls our decisions. Thus, it is an interpretation based on case law, we come back to these precedent rulings, which govern. If they refer to the way they are judged, we must do the same. Then there’s the second approach that you mentioned, our municipality has been very generous, and a municipality can always exceed the case-law. It is possible to choose to be more generous, but that is a question for the municipality’s politicians. In our city, we have guidelines. (Group 2, social worker 2)

Some of the social workers believed that some of the parents tried to transfer their parental responsibility to the municipalities – they said that these parents had unrealistic expectations of what PA should compensate for, especially when their children were very young. Thus the social workers became provoked when they met parents whom they thought were under the impression that they could be relieved of all of their parental responsibilities because they were the parents of a disabled child, which is exemplified by the following quote: ‘Perhaps you may have the idea that it will cover up for everything, but three-year-olds [without a disability] actually needs supervision at night, they may wake up several times’ (group 4, social worker 1).

Bureaucratizing

Bureaucratizing is about objectifying decisions; gathering facts and evidence rather than relying on subjective judgements. Bureaucratizing is an approach to maintaining professional integrity, which included strategies such as utilizing structured assessment tools, utilizing precedent rulings, collecting medical certificates, and ‘discovering distorted claims’. Information was requested from various actors and was documented meticulously in the social investigation, in which the social needs assessment played a decisive role. The administrators talked about the assessment as a qualification process for sorting out those persons who were entitled to obtain PA, ‘But you have to qualify for twenty hours first, then we usually say, that it is as if through the eye of the needle and then the whole pearly gate opens’ (administrator 1).

Utilizing structured assessment tools

Most of the case workers used structured manuals to include relevant perspectives in the social investigation. Many of the municipalities had developed detailed and specialized surveys for PA with a specific focus on expenditure of time. Despite this fact, many case workers found it difficult to ask children about basic needs. Many of the social workers found it difficult to ask children because they themselves perceived the questions as intrusive, and some of the social workers thought of it as stigmatizing and offensive having to answer those kinds of questions.

The case workers experienced a change in how they should assess basic needs and perceived it as restricting their exercise of authority:

But then there’ve also been changes in how we ‘should think’ – how to assess basic needs and then what we should count as basic needs and so … Yes, it’s become … both clearer, but it’s also like … I don’t know how to put it … tightened it? (Administrator 4)

Although decisions were supposed to be based on specific individual needs and circumstances, they were often based on general assessment criteria, in which ‘normal development’ and ‘parental responsibility’ were taken into consideration. The case workers’ interpretation of parental responsibility was in line with the SSIA guidelines, in which parental responsibility was considered to cover all actions that parents of a child without a disability would help them with. Despite access to guidelines, many of the case workers found the concept of parental responsibility difficult to grasp and they struggled to come to terms with the practical implications of how to distinguish support connected with parental responsibility and support provided on account of the child’s disability:

I think about same-age ones, what they do. You look at what a 3-year-old can do, can you leave them alone in a bathtub or in food situations or alone in a room or at the playground? I don’t know … The best way to know is to look at precedent rulings and then you can see it’s not normal for a 3-year-old to do this. (Group 2, social worker 3)

Parental responsibility is rather … it’s the courts that have judged and we review practice

… If you read many court rulings, a pattern appears somehow … They seem to follow some kind of developmental psychology, I think. (Group 1, social worker 1)

This distinction was perceived as particularly difficult when parents themselves were employed as their child’s assistant:

When the parent is an assistant, what do you do as a parent and what do you do as an assistant? Because I’m with my child all the time … Yes, but, a little bit belongs to your parental responsibility and then you cannot allow time for that. Yes, it’s really hard. (Group 1, social worker 4)

It was also perceived as problematic when the child was very young: ‘Then they applied for assistance when he was two. And in some way there was no parental responsibility for him’ (group 2, social worker 2).

Utilizing precedent rulings

Precedent rulings were viewed as evidence in bureaucratizing and were utilized to motivate and thereby legitimize the case workers’ decisions. Using precedent rulings as evidence in the social investigation had affected what were to be seen as basic needs in the assessment. There had been a gradual change in how basic needs were interpreted and assessed in the social needs assessments. The steady increase of more restrictive assessments for what should be considered as basic needs was not related to individuals’ decreasing need for support; rather, it could be explained by the increased use of precedent rulings, which had affected the case workers’ interpretations of the law:

I mention this with case law, it’s changed a great deal in recent years, and we are forced to relate to it. These precedent rulings and it’s hard because you’ve seen a difference with how you had to consider the need 7–8 years ago against what we can do today … There’s so much you don’t include in basic needs today as you did earlier. There’s been a lot about this in the newspapers. (Group 2, social worker 2)

Overall, decisions taken complied with precedent rulings and guidelines. The assessment criteria for basic needs had changed over time, which had led to a continuous shift in decisions: ‘You have seen things in one way and then you are being thrown to see it in another way, it is difficult’ (administrator 1).

Many of the case workers experienced assessments now being more restrictive as regards basic needs:

It’s been made harder to count certain things as basic needs, which we did initially. This means fewer [people] will get up to 20 hours. Yes, the first thing that [changed] … it was about the meals that it happened first but then even that with getting dressed and undressed was tightened, too. Then we’ve got clearer guidelines on communication, i.e., in-depth knowledge. (Administrator 1)

Precedent rulings helped the case workers to identify both what could be considered as ‘normal parental responsibility’ for a child of a certain age and what could be referred to as expected age-related development for a child of a certain age. Some of the social workers considered precedent rulings as a support in their work: ‘I think it’s nice to lean against case law. I have no problems with it, on the contrary if there is nothing, it will be hard’ (group 2, social worker 4). In addition, the majority of the case workers had access to legal guidance which was provided on a regular basis either by an external consultant or by staff at their own authority.

Collecting medical evidence

Collecting medical evidence means compiling and evaluating different kinds of information that is meant to ‘prove’ the existing disability, as well as its extent and consequences, in which the medical certificates play a crucial role in confirming the applicant’s basic needs. By asking experts and other persons who were considered to have thorough knowledge and understanding of the child’s functional capabilities, case workers could confirm that the child had needs which corresponded to the expenditure of time claimed in the application:

And we’re very dependent on the certificates we have, which reinforces oral information. We always request an ADL [activities of daily living] assessment … Thus, all certificates that substantiate the matter are important, in terms of permanent needs. (Group 2, social worker 2)

Because we’re supposed to do this, it’s for analysis, we’re going to look at; how does their description agree with the medical [certificates]? Hence, does the medical evidence reinforce this functional limitation they describe – yes or no. (Administrator 1)

Consistency in professional opinions was sought since different perceptions of what the child was capable of doing were believed to complicate the social needs assessment. High consistency in medical certificates and professional opinions made the case workers feel more confident about motivating their decisions. If there was conflicting information, the case workers tried to visit different environments in which the child resided, but when the case workers formulated their decisions, little consideration was paid to the importance of the shifting context.

Dissatisfaction with the medical certificates was explained by the physician’s inability to describe the consequences of the disability:

There may be a line about the child’s diagnosis and one gets nothing more that says anything about the consequences of the disability and the diagnosis just for this particular child [stresses this]. (Group 2, social worker 2)

Another complaint referred to the physician’s lack of detailed knowledge of the child, which resulted in medical certificates based on parents’ description of the disability, rather than on the physician’s professional opinion:

Yes, but they can write the most amazing [things]; they can write that they are entitled to assistance 24 hours a day. And many stories about what parents have related, on a certificate. And very little in the box for status and objective findings … (Administrator 1)

In this context, the medical certificates were supposed to serve as a guarantee that the applicants were not exaggerating their needs for support.

Discovering ‘distorted claims’

Discovering ‘distorted claims’ entails avoiding policy distortion as well as disclosing parents’ and assistance companies’ inflated claims for obtaining PA. Discovering ‘distorted claims’ included two interrelated actions; where creating the structural conditions of an assessment was part of processing and the caseworker’s personal judgement was added in order to create perspective. In order to enhance a formal right and thereby avoid decisions based on ‘false grounds’, administrators applied what they considered to be ‘feasibility assessments’. This meant assessing whether the required time for a certain need or doing a certain activity seemed reasonable in relation to the applicants’ stated expenditure of time. The applicant could not, for example, do several activities simultaneously or sleep only two hours a day. Overall, assessing what should be identified as valid basic needs was considered to be a difficult task: ‘It is difficult to assess needs, basic [needs] also, when it is … It is often a mixture; small pieces of practical help and activating support’ (group 5, social worker 5).

If there were no precedent rulings to refer to, many of the social workers tried to associate with how they handled parental responsibility in their private situation: ‘My daughter is almost seven years old but we shower her, and sometimes she still needs help in the toilet’ (group 4, social worker 4). Thus, their private situation was transformed into representing the parental responsibility of an imagined ‘normal population’, which was adopted as assessment criteria in the social needs assessment.

To expose cheating and irregularities, case workers compared the stated need for assistance with what was written in the medical certificates. If there was a discrepancy between how staff at school and parents or proxies described the need for support, the case workers became suspicious:

At the same time, it’s very difficult, because the school gives a completely different picture of this boy. He gets there, he goes to the toilet by himself, he eats food in the dining room, he can take care of everything … But at home, it’s claimed that he needs help with going to the toilet and getting dressed. So we get really different perspectives and we don’t have any good [medical] certificates that prove what he needs. (Group 2, social worker 7)

Having a perceived vested interest leads to the suspicion of ‘distorted claims’. The lack of trust seemed to derive from the case workers’ belief that exaggerating needs was a deliberate strategy on the part of assistance providers, with the objective of reaching the ‘right level’ of provided assistance hours. Faced with an application that seemed to inflate the needs for assistance or had inadequate medical certificates, the case workers were likely to reject the claim for PA: ‘Thus, if you don’t get a certificate that strengthens it [the need for PA], it points more to a rejection because you don’t know, there’s nothing that strengthens it [the need]’ (group 2, social worker 2).

Some of the parents were also believed to have a vested interest when they received their main income from being their child’s assistants:

Assistance, that is, if you have an employment relationship, then it continues. Or if it’s wise parents that take some part of it, because they want to keep working, being employed, and then maybe they take it themselves, early morning and late night. But if it’s become the main income then it continues. (Group 6, social worker 6)

Apart from blaming private assistance companies for exaggerating needs, the case workers’ discussion about irregularities and assistance fraud referred to hearsay and/or media reports about cheating. However, none of the case workers told about any personal experience of fraud related to applications of PA.

The fear of ‘lock-in effects’ often coincided with the case workers’ own perceptions of normality, in which adolescents’ should emancipate themselves from their parents. The social workers thought that parents’ vested interest would not allow children to have external assistants. Many of the social workers considered that an adequate solution to this problem was to put a limit on how many hours parents should be allowed to work as assistants to their children: ‘I wish there was some form of law that says parents should not be employed [as assistants] for as many hours as they are now’ (group 4, social worker 4). None of the case workers problematized the fact that prohibiting or limiting parents from working as PAs would mean that whenever external assistants were absent, parents had to provide unpaid support – support that exceeded ‘normal’ parental responsibility or did not contribute to the idealized emancipation from the parents. Few of the social workers expressed any thoughts about the reasons for parents working as PAs to their children. Some of the social workers could understand that parents wished to stay at home when the children were young, but when they became older the social workers thought it was better if the parents worked and the child was assisted by external PAs. The social workers found it difficult to imagine any advantages for children having their parents as assistants.

Justifying and protecting

Justifying serves to protect self-esteem and professional integrity. Protecting concerns both the personal and the professional self-image. The case workers did not want to be seen as unempathetic people. They became upset when parents and relatives accused them of failing to understand or being insensitive to both the child with the disability and/or the entire family situation. The social workers understood that parents might experience hardship and difficult situations in relation to the entire family situation: ‘Sometimes it doesn’t turn out well and we don’t agree with either parents or adolescents, and that’s when we lie sleepless. It’s not funny’ (group 1, social worker 1) Nevertheless, it was not always possible for them to grant the requested amount of assistance hours, either with reference to precedent rulings and current legislation or based on what the case workers themselves considered to be ‘rightful claims’.

Justifying dealt with sense-making by seeking rational explanations for how to handle the assessment process. Justifying was achieved by blaming others and questioning current praxis.

Blaming

Blaming is done to justify decisions in which the responsibility for the decision was attributed to societal and organizational structures, as well as other stakeholders. The case workers expressed that they had to take responsibility for making assessments that were in accordance with current praxis, which derived from case law, guidelines and regulations. Hence it was not up to them to question the courts’ interpretations of the law or the local politicians’ influence over municipal guidelines.

Sometimes the case workers informed parents, children and proxies, that they – as individuals – had limited power to affect the outcome of decisions. Some of the case workers were only responsible for doing the social investigation, while their managers or a political board were responsible for making the final decision about access to PA. One of the social workers said that ‘Political decisions come from the city council, it has to be that way’ (group 3, social worker 1) and an administrator claimed that ‘Many of us administrators have a good knowledge of the law. And the decisions are quality-reviewed by decision-makers, and several colleagues in some way’ (administrator 6).

The case workers expressed accusations towards assistance-providers and parents for taking advantage of the system and the generous disability act, which involved exaggerating the needs of the person applying for PA. Representatives from assistance companies were often accused of advising parents to apply for an excessive amount of assistance hours, to tell the case workers that their children could not do anything and not allow disabled children to participate in the assessment meetings since that could make case workers doubt the descriptions of the children’s needs:

They [the families] have also become an easy target, I can experience that assistance companies recruit them in the mall during the weekend, and get them to sign a contract … So the assessment meetings are very special, because then they [the children] bring their parents, eagerly cheered on by the assistant companies that write applications which are not at all consistent with the visible picture. (Group 4, social worker 4)

Some of the social workers also blamed other stakeholders for providing parents with incorrect information about access to various support interventions. Being provided with incorrect information from health social workers made parents believe that their children were entitled to PA solely because they belonged to the target group entitled to apply for LSS interventions:

What I’m thinking about, is the cooperation with the habilitation, that sometimes the counsellors tell crazy things; that you can get everything and then it becomes a bit difficult. For example, it may be about access to companion service at school or something else that isn’t available as support. It’s very important that you collaborate and give information in the same way. (Group 2, social worker 1)

The social workers said that this kind of misleading information contributed to parents becoming angry and disappointed with the social workers who were unable to grant access to PA or any other support interventions without making a proper social investigation.

When parents blamed the social workers for not helping them to cope in situations which parents described as unsustainable, some of the social workers were under the impression that some parents had not been able to cope with the presumed crisis related to being parents of a child with a disability:

And then you end up there … And just this grief that you have to deal with their sorrow and despair in such an incredibly ill child as this one was, while it’s absurd to say that; you have a parental responsibility. (Group 2, social worker 2)

Questioning

Questioning is a strategy for justifying when doubts are expressed of whether the consequences of the decisions are consistent with the original intentions of the rulings, in this case the LSS Act. Adapting to the routine use of precedent rulings created a tension between individual social workers’ understanding of the goals and intentions of the Act in relation to made decisions:

It also happens that … precedent rulings which turn up that suddenly and have the effect that municipalities invent a new rule or so. … And if you have guidelines sometimes that contain routines and stuff that are incompatible with the law. (Group 5, social worker 5)

It is to and fro, yes, praxis will develop, but the LSS legislation is not what it was when it came into force in ‘94, especially not regarding personal assistance. And then quite suddenly, the parliament and the government, wake up about costs, hey, it costs more than the defence budget, now we must do something, and then one has to make cuts. (Group 1, social worker 3)

For some of the social workers this raised ethical questions about social work practice and the long-term consequences of denying people access to much-needed support. Some of the social workers even feared that it would result in parents permanently having to leave their children at institutions:

We’ve noticed the [effects] of the new precedent ruling, to some extent … Then the SSIA will make deductions, so maybe we’ll also get a lot harder … And then unfortunately you may have to leave your children … The [parents] should be able to get the prerequisites in order to be able to be there, because it’s not a matter of deficient parental ability, rather about care needs. (Group 1, social worker 2)

The implementation of precedent rulings also raised questions about legal rights and the unlimited power of the supreme courts, as exemplified in the following dialogue between the social workers (SW) in group 5.

SW4:

The cs – it also has a lot to do with court rulings. It depends on who is serving in the court that day.

SW3:

You don’t get any wiser from the precedent rulings

SW2:

No

SW1:

No, there are a number of …

SW4:

On some specific issues, possibly.

Discussion

Maintaining professional integrity is how case workers in this study handle the main concern of ‘compromised professional integrity’, which occurs under shifting structural conditions. Struggling under shifting conditions contributed to many of the case workers being unsure of how to act in relation to recurrent changes in directives regarding various assessment criteria, in particular in relation to the increased use of precedent rulings.

Maintaining professional identity can be realized by conforming to current praxis (Evetts 2009), but when the social workers act against their own ethical beliefs and question their decisions, their behaviour can be experienced as compromising professional integrity. The findings in this study indicated that some of the social workers experienced a stressful situation when they questioned current praxis and could not reconcile it with their own ethical values. Social work research (Fenton 2015) and nursing studies (Lützen et al. 2010; Sørlie, Jansson, and Norberg 2003) have showed that stress-provoking and contradicting demands, as well as conflicting moral principles, weaken an individual’s sense of control and lack of autonomy and power. The concept of moral distress has been used to explore the psychological consequences of being aware of one’s responsibility but lacking the power and resources to act on this awareness (Sørlie, Jansson, and Norberg 2003). In addition, some of the social workers in this study questioned the adverse consequences of utilizing precedent rulings in individual assessments and a few of them expressed fears that if children and parents were provided inadequate support, children would have to go back to live in institutions.

Although many of the social workers were aware of the negative consequences which denial of access to PA had for the children and families concerned, they felt unable to decide otherwise. Following the prescribed behaviour of bureaucratizing decisions, this could be interpreted as if the majority of the case workers had internalized understandings of what constitutes an appropriate performance in relation to their work environment and normalized their own behaviour accordingly. Although Sweden has ratified the Convention on the Rights of the Child, the social workers did not utilize the convention to protect the rights of disabled children. The case workers’ behaviour could be understood in terms of emotional labour as described by Hochschild; that is, their ability as social actors, to work on emotions in order to present a socially desirable performance and capitalism’s appropriation of that skill. Hochschild’s (1983) research among flight attendants suggested that workers used techniques of ‘surface acting’ and/or ‘deep acting’ to achieve desired emotional performances at work. Hochschild argued that demands for such performances can have a negative impact on workers, leading to burnout and alienation, which seems to be in line with expressed experiences that indicated the presence of moral distress among some of the social workers (Sørlie, Jansson, and Norberg 2003).

Discovering ‘distorted claims’ appears to have reinforced the case workers’ engagement in collecting medical evidence and utilizing precedent rulings. Utilizing precedent rulings involved either accepting or adapting to current practice but feeling uncomfortable. Regardless of the case workers’ personal attitudes, they had to comply with current practice. This meant utilizing precedent rulings as if they were applicable on a general basis, which overruled the possibility of making decisions based on individual circumstances (Bondesson 2017). The diligent use of precedent rulings, combined with medical certification, has further attenuated disability rights. The demand for medical certification, combined with a detailed assessment of the individuals’ lack of functional abilities, serves to promote an image of professional judgement based on objective and unbiased expertise. Hence, clinical medicine offers the promise of diagnostic methods that can distinguish between genuine disability and feigned disability (Stone 1984). Thus, those who can ‘prove their disability’ and at the same time accept the label are allowed to benefit from the politics of redistribution (Stone 1984).

Before 2008 there were no articles in the Swedish press that featured the occurrence of assistance fraud, but between the years 2009 and 2015 there were over 500 published articles related to the presumed overuse of PA (Hall 2015). The way in which disability and issues such as social security benefits are portrayed and culturally constructed will play a role in how the policies described are perceived, as well as the esteem in which disabled people are held more generally (Fraser 1997). According to Evetts (2009), the presence of parallel discourses changes what is to be considered professionalism within the field.

In this study, the case workers saw it as one of their main responsibilities to make sure that assistance compensation was granted on a reasonable level instead of being based on what was perceived as stakeholders’ exaggerated needs. The phenomenon called ‘commercialized professionals’ addresses this contradiction embedded in the market model, when providers are supposed to do the best for their clients while achieving this within a tight financial frame (Evetts 2009), an issue that has been scrutinized by Lipsky ([1980] 2010) when discussing the conditions under which street-level bureaucrats operate. In their ambition to conduct accurate social investigations, many of the case workers seemed to have lost the purpose of the intention with the assistance reform; that is, to ensure disabled people independent lives by means of self-determination and freedom of choice. In the United Kingdom, the impact of austerity measures has already caused significant suffering for disabled children and their families. It has been revealed that disabled people and their families experienced diminishing levels of civic and social engagement, retrenchment of services and an increase of mental health-related problems (Wood 2012). Recent media reports (Bengtsson 2018; Swedin 2018) reflect the same kind of adverse consequences that already has occurred in the United Kingdom (Wood 2012). Young children between the ages of four and six years have been denied PA, since respiratory aid and feeding assistance via percutaneous endoscopic gastrostomy are no longer considered basic needs (Swedin 2018). From 2015 onwards, the decline of assistance allowance provided by the Swedish state has forced disabled people to apply for PA from the municipalities (Bengtsson 2018). According to a report from the National Board of Health and Welfare (2018), one of the clearest deteriorations for individuals is that it takes longer to investigate and enforce decisions within LSS legislation, where a clear change took place between 2015 and 2016. In addition, the commissioner of the Council of Europe has expressed concerns that Sweden makes it more difficult for people with assistance needs to get them met (Swedin 2018).

The case workers considered the utilization of precedent rulings as a compulsory part of the social investigation. In June 2017, the Supreme Administrative Court announced a court ruling which implied that PA could not be provided for time in-between active support interventions (Högsta Förvaltningsdomstolen 2017). If applied as previous precedent rulings, it would mean ‘the death’ of the entire assistance reform – suggesting that disabled people once again should be referred to a patchwork of various support interventions (Jacobson 1996). As a response to this particular court ruling, the government has proclaimed a temporary stop to the reassessments of already granted assistance allowance. Furthermore, the government has issued a proposal for a bill that would abolish the consequences of this court ruling. However, this bill does not change the impact of previous precedent rulings, which still leaves large groups of disabled people without access to PA. In December 2017, the National Board of Health and Welfare reported on its government assignment concerning the investigation of the consequences of two judgements in the Supreme Administrative Court, where the main issue concerned the so-called fifth basic need other assistance that requires in-depth knowledge of the disabled person, indicating that children are overrepresented in the group affected by these court rulings. Their analysis showed that it was difficult for the municipalities to find interventions for children who can meet the needs previously met by PA. Almost half of the children received relay service instead, an initiative that gave the child a worse chance of independence and participation than PA. Twenty per cent of the children who did not receive assistance will be without municipal efforts (National Board of Health and Welfare 2017). The increasing utilization of precedent rulings has raised questions regarding the legal literacy of Swedish social workers. Undergraduate education in social work is a generalist education which means that social workers have a limited knowledge regarding interpretation and application of precedent rulings.

The question that arises at this point is, therefore: what does it mean to be a professional social worker and how can professionalism in social work be understood? In her analysis, Evetts (2009) makes a distinction between ‘occupational professionalism’, where the focus is on finding appropriate solutions for the service user, and ‘organisational professionalism, where the locus of control lies with the authority which prioritizes managerial procedures, budgetary imperatives, performance management and audit. The findings in our study showed that the current use of precedent rulings, medical certification and uniform screening instruments has reinforced the use of standardized procedures and hierarchical structures of authority and decision-making, which corresponds to the idea of organizational professionalism (Evetts 2009; Fenton 2016).

During the last decade, social work education in Sweden has stressed the importance of academic skills and research (Sandström 2007), a development that goes hand in hand with the strong influence of evidence-based practice (Swärd and Meeuwisse 2007). Simultaneously, the length of field practice during social work education has been reduced to an average of 75 days (Tham and Lynch 2014). A Swedish study of social work students’ transition from the university to the field revealed that they felt unprepared for the social work positions and expected to receive considerable support and guidance in their workplaces (Tham and Lynch 2014). In the face of uncertainty, students may actually look towards more technical responses to issues encountered in their work (Tham and Lynch 2014). Studies from the United Kingdom indicated that students (Preston-Shoot 2011), and inexperienced social workers (Fenton 2014), objected less to and relied more on agency procedures in line with ‘organisational professionalism’ rather than on ‘occupational professionalism’ grounded in the value base of social work ethics and critical social work theories.

In this study we have highlighted the various strategies which the case workers employ in order to maintain their professional integrity. The results indicated a shift from occupational professionalism to organizational professionalism, leaving the individual social workers without adequate tools to provide service users with adequate support.

Conclusion

In light of our findings, we argue for the restoration of social work professionalism grounded in an occupational professionalism. Good practice requires that the social worker develops skilful ethical behaviour as a practitioner. The findings emphasize the need for professionals to strive for an increased awareness of social work ethics in which assistance users and their families should be considered knowledgeable allies. Social/case workers cannot stop at identifying injurious disciplinary practices at an individual level; rather, they should engage in taking ethical action on behalf of the service users by challenging the structures at a societal level. To facilitate such action, social work education has to engage with developing a curriculum in line with social work ethics, by providing legal, ethical and theoretical knowledge aligned to ‘occupational professionalism’. A professional knowledge that is grounded in disability studies and contributes to promote reflexivity and critical thinking, which promotes having the moral courage to take ethical action and advocate for change.

Disclosure statement

No potential conflict of interest was reported by the authors.

Funding

This work was supported by Norrbacka-Eugenia Stiftelsen [PhD student grant]; Stiftelsen Allmäna Barnhuset [grant number 4-166].

Acknowledgements

The authors would like to thank the participants who generously gave of their time and shared their experiences. A special thank goes to Ms Helen Scott and participants at the Grounded Theory seminar held in London, UK, April 2017. The authors also would like to thank Ann-Marie Öhrvall, PhD, occupational therapist in the Department of NVS, Division of Occupational Therapy, Karolinska Institutet, Stockholm, Sweden and research director at The Research & Development Unit North-East, Danderyd, Sweden.