Introduction and aims
This article is based on a study which concerns Child welfare workers and their experiences with mothers who have intellectual disabilities. The study has two aims: first, to search for child welfare services' own descriptions of their practices in the assessment of the care skills of these mothers; second, to investigate how child welfare services recognize mothers with intellectual limitations. The empirical data in this study consist of interviews with 19 Norwegian child welfare workers who were interviewed in six focus groups.
The perspective taken is that of child welfare workers who are responsible for the implementation of The Child Welfare Act (Act of July 17 1992, No. 100), which aims to ensure that children receive necessary care from their parents, among other things. The participants focused on women in the interviews because women are more often clients in child welfare than men. Parenthood is often understood as motherhood in child welfare. Caring is so often associated with women both because they feel responsibility for caring insofar as this is the social world to which they belong (Traustadóttir 2004), and because caring is a way in which women construct themselves as females (DeVault 1991). Research on parents with intellectual disabilities has also had its primary focus on the mother's role (Llewellyn 1990; Tymchuk 1990), although research on the father's role shows that fathers are more important than previously anticipated. Sigurjónsdóttir (2004) argues that support workers in her study often assumed an old-fashioned model of family life with traditional gender stereotypes.
A more critical stance against the child welfare perspective should underline the importance not only of focusing on mothers (with or without disabilities) but of finding ways to work with both mothers and fathers, including their networks of caring friends and relatives. We agree with Traustadóttir and Sigurjónsdóttir (2010), who argue that ‘a closer look at the lives of parents with intellectual disabilities helps us understand that they, too, are trying to resist oppressive conditions’ (116), and as McConnell and Sigurjónsdóttir (2010) argue, parents with mental limitations have difficulties getting out of the ‘Child Protection Net’ once caught in it.
The background scenario for this study stems from an incident in 2001, when a young Norwegian mother was deprived of her two children, because she, in the opinion of child welfare, failed to provide her children with ‘good enough care’. The issue received a great amount of attention in Norwegian newspapers between 2002 and 2004 because the mother had allegedly limited cognitive resources (Dagbladet.no 2002; VG.no 2003; Aftenposten.no 2004). The Child Welfare Agency had in this case initiated an IQ test in order to clarify the mother's level of ability and created a storm of reactions both from the media and other parts of society. The debate that followed focused mainly on whether it was ethically correct to use scores from an IQ test to determine whether a person was fit to be a parent. The debate lasted until the case was concluded in 2003 with a ruling in the Hålogoland Court of Appeal (case number 2003-00310), giving the Child Welfare Agency their approval. The decision made in the Court of Appeal emphasizes the necessity of assessing the mother's adaptive abilities; i.e. evaluating her everyday functioning as a mother. The use of the IQ test did not seem to be of the same importance to the Hålogoland Court of Appeal (ibid) as it was in the decision of the lower court. In our opinion, this case and the attention it received in the media is interesting for two reasons. Firstly, the discussion in the media points toward an ambiguity about the experience, knowledge and expertise that exist in the municipal child welfare services concerning mothers with intellectual disabilities. Secondly, the case raises uncertainty about the use of IQ tests in child welfare services and why it created such a massive media storm and provoked as many reactions as it did.
A pre-understanding in this study has been that mothers with intellectual disabilities have special needs, but that they are not necessarily more demanding and problematic than other cases in child welfare. One assumption has been that mothers with intellectual disabilities are not given high enough priority by the child welfare services, and that this may be related to stigmatizing norms. The silence that seems to prevail, without discussions that seek to combine research and practice, appears to have made room for the many myths about intellectual disabilities (Llewellyn and McConnell 2010).
Normalization and integration
Normalization and integration have affected the development of welfare politics in Norway over the past decades, and constituted the ideological pillars of a reform of health care for people with intellectual disabilities carried out in Norway in the period 1989 to 1991 (NOU 1985:34; Ot. prp. n. 49, 1987–88; St. m. n. 67, 1986.87; St. m. n. 47, 1989–90). The reform, which consisted primarily of dismantling institutions, transferred the responsibility for those with intellectual disabilities from the county level to the municipal health and social services. Normalization and integration of programs and services for citizens with intellectual disabilities can be considered both as targets and as aiding in efforts to improve their living conditions (ibid). Reflections on the position of the intellectually disabled in society and their ability to fill a parental role are therefore an important approach to knowledge and understanding in child welfare cases where the mother has an intellectual disability.
Many terms have been applied to the type of disability that characterizes mothers we focus on in this study: learning disabilities; intellectual disabilities; mental retardation; cognitive impairment; cognitive limitation (Mørch et al. 1993; Karlsen 1995, 2001; Booth and Booth 2000; Galaun et al. 1999; Pixa-Kettner 1999; Feldman 1998, 1999; Tymuchuk 1999, 2006; Llewellyn et al. 1999; Melgård 2000; English 2002; McConnell et al. 2003; Young and Hawkins 2006). The many different definitions of disability that have to do with intellectual functioning might reflect both the knowledge of and attitudes to this phenomenon. But it can also be an indication that the scale of what should fall within or outside a normal range is changing, and that it is therefore difficult to find the appropriate term for this disability. We have chosen to use the term intellectual disability.
One must also keep in mind that discussion of who is to be labelled as intellectually disabled has changed over time and varies from one society to another (Llewellyn et al. 2010). There is also an on-going discussion about social and environmental factors that contribute to the creation of intellectual disabilities (Traustadóttir and Kristiansen 2004). Another relevant discussion is the underprivileged position that intellectually disabled people, especially women, have in society and the way prejudice and labelling contribute to create barriers to participation in ordinary life (Mirfin-Veitch 2010; McConnell and Llewellyn 2010).
The prevalence of mothers with intellectual disabilities is difficult to estimate, but researchers seem to agree that there is an increasing amount of families in society where one or both parents have intellectual limitations (Feldman 1998; Llewellyn et al. 1999). Estimates from The Swedish Social Agency (Socialstyrelsen) indicate that at any given time about 0.5 to 1 per thousand of all mothers within the population of Norway, Sweden and Denmark have intellectual disabilities (Socialstyrelsen2007). The estimates are uncertain because some people with intellectual disabilities can be difficult to detect (Melgård 2000). They may perform as well as those in the lower part of the normal range and therefore they do not necessarily stand out from other parents (Egelund and Sundell 2001).
English, Australian and American literature seem to confirm that people with intellectual disabilities can have problems functioning in society as parents (Booth & Booth 2000, 2004; Kirsbaum 2000; Block 2002; Llewellyn et al. 2003). Booth & Booth (2004) argue that parents with intellectual disabilities are likely to come into contact with child welfare services in one way or another, because they might need advice on practical issues or financial problems.
A possible intellectual disability may exist but is undetected by the child welfare services. In order to determine whether there is any degree of intellectual disability, IQ testing is used as a tool but only in combination with an assessment of adaptive functioning (Karlsen 1995, 2001; McGaw and Newman 2005; Socialstyrelsen2007).
How scores are measured depends on both the contents and the context of the measurement. The ability to learn and to develop must be linked with the measured IQ (McGaw and Newman 2005). However, there is disagreement about where to draw the line concerning what counts as a ‘good enough’ parent. Some researchers argue that people with an IQ over 70 are not intellectual disabilities because they function well as parents, while other studies operate with an IQ limit of 80 (Mayes et al. 2006). Others believe that the ability to learn and to develop caring abilities is present even with an IQ as low as 60 (McGaw and Newman 2005). Lisbeth Pipping (2004), who grew up with a mother with intellectual disabilities, claims that a person with an IQ below 70 will not be able to care for a child.
An important requirement for judging a person's adaptive functioning is the living conditions that surround the person. Society's demands and the support of the environment are essential in determining a person's opportunities for optimal functioning (Socialstyrelsen2007; McConnell and Llewellyn 1998). This means that the requirements for adaptive skills will vary throughout life. At the same time, it seems likely that the genetic component of IQ becomes more evident and significant for the adaptive functioning the more complex society becomes (McConnell et al. 2003).
There is little research on the vulnerability of growing up with parents with intellectual disabilities. Two themes have been addressed by since, however. One is the risk of genetically conditioned learning difficulties. The second is the risk that children may suffer abuse, neglect and developmental disorders (Karlsen 1995, 2001; McGaw and Newman 2005). There is also a risk that children can take over control in the home, simply because they understand more of the complex society than their parents. They are young adults with responsibilities beyond what they are developed for (Tymchuk 1992, 1993; McGaw and Newman 2005).
Keltner (1994) has carried out a comparative study of two groups of mothers with the same underprivileged social background. One group consisted of mothers with intellectual disabilities. Measured IQ was below 75. The second group of mothers had an IQ score of above 85 and was seen as intellectually normally functioning. The study showed that the mothers in the first group were significantly more likely to render children to neglect than mothers in the second group. Based on a study of mothers who have grown up with intellectual disabled mothers, Llewellyn and McConnell (2010) found that these mothers had experienced greatly voided parental care, but half of the mothers in the material said that their mothers had been good and caring. It seems important to ensure that child welfare carefully evaluates such experiences and keeps in mind that care skills are learned through one's own childhood.
A total of 19 child welfare workers were interviewed by two interviewers in each of the six focus groups (Bloor et al. 2001; Litosseliti 2003). The purpose of using focus groups was to create an atmosphere where the participants could speak freely with each other (Pettersen 2009). This method for gathering data is considered to be particularly well suited to reveal patterns of social groups' stories, interpretations, norms and interactions (Halkier 2005). The interviewers not only presided over the meetings but had an active role in regard to participating in the focus group discussions. Holstein and Gubrium (1995) describe this form of participation for active interviewing. They do not speak of focus groups in specific terms but argue that active interviewing is an alternative to the more passive form of interviewing where the researcher is more of an observer. In active interviewing the participants and the researchers cooperate by constructive storytelling and searching for meaning. This implies a social-constructivist perspective on research; it postulates that meaning itself is also a social construction (Berger and Luckmann 1966/1991). As a basis for discussions in the focus groups a semi-structured interview guide was developed. A case was also presented to illustrate the research question in focus. Using case studies or vignettes as the entrance point to the reviews of various themes is methodologically recognized (Bunkholdt 2006; Grinde 2006).
Focus groups should ideally consist of between 10–15 participants but in studies with sensitive issues or vulnerable groups it can be an asset with a smaller number of people. Some groups may come down to 3–5 participants when special circumstances require it (Pettersen 2009). The largest focus group in this study consisted of four persons and the smallest had only two. We chose to conduct the interview with only two persons as a couple interview. All interviews were digitally audio-recorded and transferred to a computer for storage. The interviews were thereafter transcribed. All of the recordings were erased when the analyzing phase was completed. Each interview lasted 1–2 hours and amounted to 20 to 30 pages of transcribed text.
In focus group interviews, it is the interaction and conversations between the informants themselves that constitute the main focus of the researcher's interest (Halkier 2005). We learned, however, that we could not only be spectators during the interview. We were also participants through questions and input. Our questions and suggestions followed the discussions in the groups but at the same time we had a layout that had been determined in advance. We were not unaffected by the conversation that took place between the interviewees and they were not unaffected by us. Even so, we believe that the opinions and beliefs that emerged from the interviews are real expressions of the informants' thoughts and experiences with mothers who have intellectual disabilities.
Informed consent was given from all of the informants, including the recording of the conversations on digital audiotape and permission to use citations from the interviews. The consent was given verbally. All names and data are made anonymous in the presentation in such a way that we believe we have taken care of sensitive information in an ethical manner.
The project has been subjected to the Privacy Issues Unit at the Norwegian Social Science Data Services (NSD), which has concluded that project does not require any special approved under the Personal Data Act (§§ 31 and 33), because the data cannot be linked to any personally identifiable information. In addition to approval given by NSD, it has been important for the researchers to live up to Norwegian ethical standards as they are stated by The National Research Ethics Committee for the Humanities and Social Sciences (NESH). These standards include reflecting on how to conduct research in order to avoid unjustifiable ethical consequences for individuals, groups of individuals or society. There are, especially, three considerations which have been important in relation to research ethics in these studies: the right to self-determination and autonomy; respect for peace in private life; and an evaluation of the risk of damage or injury. All stages of the project were carried out by the researcher in a manner so that the ethical considerations mentioned above are insured.
Our goal was to establish contact with child welfare workers who had experience of working with families with intellectually disabled parents. This is a relatively small group (Socialstyrelsen2007). We therefore made a strategically orientated choice (Dalland 2006) and turned to child welfare workers with a minimum of two years' experience in child welfare services in municipalities with a population exceeding 10,000. This study consists of six municipalities: two rural municipalities and four town municipalities. The smallest municipality has about 14,000 inhabitants, the largest approximately 50,000. The informants' professional experience in municipal Child welfare work ranged from two to thirty years. Participants were selected first by telephone contact with the leader of the child welfare office. The leader thereafter asked the employees who had more than two years' experience and at least a bachelor degree within social and health sciences whether they wished to participate in the study. In this first conversation, the project was presented to the participants. After receiving a list of participants from the child welfare leaders a letter was written to each participating child welfare office where a detailed account of the project was given and in which they were asked to make this known to their employees.
Child welfare workers may have different academic backgrounds, such as child welfare, social worker, preschool teacher, etc. We did not apply education as an important criterion in the selection of informants. The reason for this was that we considered their practical experience in the field to be more significant for the study than their formal education. All interviews were carried out in the child welfare agencies. Participation was voluntary and all informants could choose to withdraw from the interview at any time. None of them chose to do so.
The analysis was performed in four steps (Kvale 2001). The first step involved letting the participants describe freely, without interpretation or explanations, their experiences in focus groups interviews. The second step involved discussions in the focus groups where the participants asked questions and give their responses to the story that was told. New elements could arise during this step and the storyteller might see factors he/she was not previously aware of. Here, the participants gave their own interpretation of the story. In the third step, the interviewer started to arrange the material in meaningful categories, based on themes from the interview guide. This is what Kvale (ibid) calls condensation of meanings, an interpretation process that is done together with the participants within the focus groups. This step involves a continuous flow of interpretations together with a simultaneous confirmation or rejection from the participants. The fourth step involved transcription of all the interviews that have been recorded and structuring the written material for further analysis in arrays of defined rows and columns (Miles and Huberman 1994) using the interaction between our presupposition and the trends given in the written material (Thagaard 2009). This led to categories with subcategories. In the analysis, the categories are illustrated by using the participants' own words in a narrative reconstruction. Quotations have been chosen to give meaning to both topics that were discussed in the focus group. The main tools used in the analysis are therefore: condensation of meaning; categorization; restructuration of stories; and interpretation (Kvale 2001). All citations were recorded and transcribed in Norwegian and translated into English in the writing of this article.
The findings from this study can be summarized in the following categories and subcategories.
1. Mothers with problems
- a. they both stand out and do not stand out in society;
- b. the dismantling of institutions in Norway has made this group more invisible for society in general.
2. Child welfare dilemma
- a. child welfare must apply normal requirements to mothers with intellectual disabilities;
- b. child welfare does not have the appropriate tools;
- c. some families are in need of life-long help.
Mothers with problems
They stand out – and do not stand out in society
In conversations about how child welfare workers started to believe that mothers they encounter in their work might have an intellectual disability, the following exchange of words can be illustrative:
Anne: I think we have met Karen (case history) many times, with her story … in-school projects, limited schooling, bullying, making friends … never got any work experience … violent men … being used by men … no thoughts for the future. I think that she would not, from experience, have any other thoughts than that she wants a new boyfriend who could to help her and little Sofia (Case history) … he should be kind and helpful.
Mary: And they have so very little understanding of the fact that they need advice and guidance. Small networks are vulnerable.
The conversation shows that the child welfare workers had an idea of who these mothers are. Their descriptions seemed to be based not only on the information given in the case, but also on the experiences they have in general in such cases. The informants described characteristics for both socio-economic conditions, inadequate education, in an unstable employment, and difficulties in relationship matters. Lack of education, little or no work experience and small networks seem to be a characteristic of many of the parents child welfare comes in contact with. The child welfare workers' stereotyped opinions about who these mothers are, and the fact that people with intellectual disabilities are commonly defined as a group, not as individuals with individual resources and needs, seem to be a prejudice that had developed out of personal experience and was not based on validated scientific knowledge. The need for increased knowledge among child welfare workers in order to develop a more critical angle with regard to the perspectives and attitudes shown in the above quotes about intellectual disabilities will be further discussed toward the end of this article.
Looking at the estimate given by the Swedish Social Agency (Socialstyrelsen2007) it is doubtful whether all the problems of these mothers were related to their intellectual disability. The statement may indicate that child welfare workers did not first and foremost have the mothers' intellectual functioning in mind, but rather how the parents' different inadequacies were expressed in relation to their care skills. They seemed to be concerned with a more adaptive approach, i.e. how the practical responsibility of childcare was carried out. It seems likely that they recognized these mothers as part of the issues that require considerable efforts in the form of compensatory measures over time. ‘It's the issues we work with the most,’ as was said in one of the focus groups. It seems that mothers with intellectual disabilities struggled with many of the same general issues in relation to parenthood as other parents in child welfare. This may indicate that problems in this zone of uncertainty are significant (Melgård 2000; Booth 2003).
Dismantling of institutions
Participants in this study seem, to a certain extent, to associate the problems with identifying mothers with intellectual disabilities with a lack of education:
Liv: When the dismantling of institutions started, being diagnosed was more important … you can say that they were stigmatized … with all the negative things, but it was in a way easier to deal with. I think of this girl … she had gone to a normal school. She had never been tested throughout her childhood or in school, and it's clear that you have no opportunity to do so either… compete in a normal working life or in further education and that kind of thing … We see that there are many youths who have big behavioral problems, that is … they are enrolled in a perfectly normal school system, while the diagnosis could be cleared up some. We get the people who are more like in the grey area now.
An important goal in the dismantling of institutions was to avoid stigmatizing a vulnerable group of people. In the quote above, however, the informant asked questions about whether normalization efforts may have had some unintended negative consequences, such as leading to children with minor intellectual disabilities being ignored in the normal school system. Without these ‘labels’, they might be at risk of not being seen as who they are and what needs they had with respect to school or work. The result may be that the child grew up and was first seen when she showed up as an adult client within child welfare because someone was worried on behalf of their child.
The social taboo of intellectual disabilities may be another unintended consequence of the normalization requirement. Our informants concluded that this was happening not only within the family, but also within the child welfare system, which often failed to address the cognitive impairment that may be an underlying cause of child neglect.
Child Protection Dilemmas
Child Welfare must apply to normal requirements to mothers with intellectual disabilities
The informants in this study expressed concerns about what would happen to the children of mothers with intellectual disabilities because they saw themselves in a context where there were many professions involved, all with a variety of opinions about what the problems are and how to solve them. The following exchange of opinions illustrates this:
Marie: It's clear we have to have normal expectations of them and at the same time exhibit tolerance.
Eve: Time goes fast and children fall behind in their development.
Interviewer: But is there anyone who discusses this subject with them?
Marit: I think we do it and those who work in kindergarten also …, I think so, but it is not systematic, no. It just runs on … and it's we who are the bad guys … the others, such as the health clinics, for example, they are the nice guys.
Eva: I think that if they do give their children what they need, then there is little predictability in it; it is from one day to another, and it is not something children can rely on.
Maria: No predictability … they are themselves … they cannot put their own needs aside when they get their own children, when they get someone else who must come first. A mother who will not adapt to the child's needs, but the child must adapt to the mother's, that's the saddest thing of all.
Maria concludes that ‘the saddest thing of all’ is when children are not met with their basic needs to be seen as a child. Child welfare workers seemed to experience that there is a paradox with respect to the normal requirements for mothers who obviously are not ‘equipped to live up to them’, as said in one of the focus groups. Normal requirements seemed to create conflict and discomfort for child welfare workers because they have a responsibility to say to parents that their care is not good enough, or that it is not within the scope of what is ‘normal requirements’. The respondents seemed to feel that they were given an isolated responsibility, which meant that they must take the final responsibility for the child when mothers who have intellectual disabilities had difficulty putting the needs of the child before their own and had problems providing compassion and empathy to the child.
We do not have the appropriate tools in Child Welfare services
The conversation below is between Lise, Tine and Anne, and it demonstrates what child welfare workers believe working with mothers with intellectual disabilities is about:
Tine: I think that these children (referring to the case history) have mothers who can't be changed so that the care they give their children will be good enough. There are plenty of good measures, maybe it's possible to try even harder, but we have a child who is constantly growing and developing in the wrong direction and shows deviations, apparent discrepancies; and we have no tools in the Child Welfare service to be able to change these mothers.
Lise: I think that the longer I work in child welfare the more resigned I become to change.
Anne: We have family counselling programs here in the community to which we are referring the parents … there is group counselling, but for these mothers, we have said that it must be up to individual measures, they can't function in group counselling.
Child welfare workers said that it is the mothers who must change, but they seemed to believe that this is not possible. They experienced a resignation on the child's behalf because it was difficult to see change and the potential for development in the mothers when it came to childcare. Hence, it became difficult to take action because they did not believe the mothers had what it takes to be a good enough parent.
Some families are in need of life-long help
The biological principle and the principle of acting in the best interests of the child mean that the aid measures must be directed toward both children and parents. But when child welfare workers find that the implemented measures are not in the best interests of the child, even though they are both extensive and have a long-term perspective, the contradiction between the two principles becomes clear. Again, child welfare workers find themselves in a dilemma.
Eva: I imagine that the aid that we present: nursery; home consultations; home visits; these measures constitute a whole aid package we put into the family. I have more faith in it than in these programs: PMTO [Parent Management Training – Oregon]; FFT [Functional Family Therapy]; there is something new here and I think that having different relief measures … I think this is important. I think this is much more useful. And then it's true that we come to an acceptable level for families that we work with all year round. So we must be there until the children turn 18 and that's kind of how it is. There are some choices child welfare service must take, some families … we must be a part of the lives of these children.
Eva says here that she would prefer to have an array of measures that last until children are 18 years old and ‘carried out 24 hours a day’. The long-term follow-up was also an ethical dilemma for child welfare workers. How much help should be put onto a family before the limits of privacy are transgressed? An understanding of the dilemmas here may lead to new insights on how the biological principle can lead to invasive measures to safeguard the child's best interests.
This study shows that child welfare workers have good descriptions of mothers with intellectual disabilities, but they are not immediately recognized as such. They recognize them first and foremost along the same socio-economic variables as other mothers in Child welfare cases. This phenomenon is also discussed by Booth and Booth (2004) in an article about children who grow up in such families. Egelund and Sundell (2001) use the term ‘borderline mothers' (78) about the group of parents who exist in an area where there are doubts as to whether the childcare is good enough. The term also fits mothers with intellectual disabilities because it shows how this group is recognized but is less visible. They are on the borderline in terms of intellectual abilities and care expertise. It is only when their lack of caring skills related to parenting is visible that the help system is engaged and the local child welfare services are contacted. Thus, the respondents in this study expressed that they, as child welfare workers, must find out why these mothers were not capable of carrying out their caring responsibilities and why possible child neglect may be associated with such lacking capabilities.
The low registration of children with different types of learning disabilities is also confirmed by other research that has been done in this area (Overland 2007; Damsgaard 2007), and may be an indication that the normalizing vision and integration ideology that the reform of health care for people with intellectual disabilities is built upon may have some unintended, negative consequences such as the invisibility of what is different and special. This in turn could lead to mothers with intellectual disabilities being treated according to the general measures that are common in child welfare, and that the special arrangements these mothers need are not implemented (McGaw and Newman 2005). The consequences for the children in such situations may be that they have to live with inadequate care while general measures that may not work are applied repeatedly.
The data collected in this study from interviews with child welfare workers seem to indicate that mothers with intellectual disabilities are stigmatized and that such a stigma can have a hidden effect on the principles of normalization of motherhood. It seems imperative that the stigmatization child welfare workers inflict on mothers with intellectual disabilities have to be discussed openly so that professional social work practice can advance based on scientific knowledge and not on biased personal opinions. Being given a diagnosis is important for people in need of public services because it is a gatekeeper for getting access to the service system. However, child welfare workers should in our opinion not be preoccupied with the diagnosis ‘intellectually disabled’ but with the quality of caring in every mother of concern. Child welfare workers should take a more critical stand toward the request for diagnosis and try to see intellectual disability from different angles. Marecek (1999) argues that categorizing people through different diagnoses builds upon psychiatric causal explanations that are linear and mono-clausal, and set aside the individual's own understanding as set forth in a personal story (narrative). The perspectives of child welfare workers that the mothers cannot be changed could be discussed against the degree of support they would need in order to be able to care for their children.
This study has focused on the stories from child welfare workers, and a major shortcoming of this study is that the voices of the mothers themselves are not heard here. Future studies that focus on mothers with intellectual disabilities are, in our opinion, necessary in order to deal with the stigma these mothers suffer from. In addition to more research on this area, it seems imperative that focus should also be put on the education of child welfare workers in order to increase their knowledge of intellectual disabilities. The demands that are put on child welfare workers in order to evaluate the care given by parents with intellectual disabilities are substantial. This study shows that child welfare workers are in the need of increased knowledge about intellectual disabilities in order to understand, evaluate and implement necessary help in these families.
It is through this struggle to find appropriate measures that child welfare workers seem to develop an understanding about this group of mothers and their special needs. In international research, considerable attention has been devoted to the fact that Child Welfare is not able to provide services that are specially adapted to this group of mothers (Tymchuk et al. 1999; McGaw & Newman 2005; Karlsen 1995, 2001, Llewellyn & McConnell 2010). If it is true that Child welfare workers first and foremost relate to parents with intellectual disabilities as citizens with the right to be parents, and not parents with special needs (Skov & Henningsen 2001, Socialstyrelsen2005), then it may be that mothers with intellectual disabilities have become a part of the normal variation in society.
Research shows that measures given to mothers with intellectual disabilities must be comprehensive and long-term in order to prevent neglect. Networking and specifically tailored training programs are important prerequisites for success (McGaw & Newman 2005; Tymchuk 2006; Socialstyrelsen2007). Child welfare workers in our survey also believed that it is the comprehensive and long-term measures that work. But they also expressed doubt and questions about whether it is right to invest too much time in these measures. They were concerned that the time it takes for mothers to become competent caregivers, if possible at all, can work to the disadvantage of the child's health and development.
The biological principle is strong when assistance for children and parents by child welfare are considered (Bunkholdt 2002, 2006; Grinde 2006). In such a perspective one might expect interest in developing comprehensive and long-term measures tailored toward mothers with intellectual disabilities so that they are able to take care of their children. But despite the general knowledge that research has brought forth, it does not seem to be the long-term measures and methods that have the greatest value in the field of child welfare. It is rather the short-term parent guidance programs which are developed through the Norwegian Children, Youth and Family Department that are offered to mothers with intellectual disabilities, even though they can hardly make use of them. This may on the one hand mean that there are disputes between the positions in the field about what is best for the children concerned. On the other hand, it may be that the ideology of normalization stretches the biological principle in such a way that these families' special needs are made invisible.
The weak position of mothers is also expressed through the child welfare worker perceptions in that they may find it difficult to talk to them about the possibility of failure. They talked with each other and with partners about the possibility that a mother may have intellectual disabilities, but found it difficult to confront mothers with this because ‘we feel sorry for them, for they can't help it,’ as informant Anne put it. In this way a difference between a language ‘on stage’ and a language ‘behind the scenes’ seemed to develop concerning this group of mothers (Goffman 1963). Problems related to substance abuse and mental health was, according to our informants, topics they can speak more effortlessly about with the parents.
Research shows that interdisciplinary cooperation and coordination of programs and services for this group of mothers are crucial for success (McGaw and Newman 2005; Socialstyrelsen2005). When respondents in this survey felt isolated and alone, it reinforced the impression that they are as dominated in their position as child welfare workers. Thus, it requires an effort to make contacts with the outside world.
Child welfare workers are in many ways in a dominant position with their responsibility for evaluating long-term negligence and lack of appropriate care for children, but they seem reluctant to act. The reason for this might be that the consequences for children's health and development are not clear enough. Even though these mothers continue to have children and their children suffer from maltreatment and neglect, child welfare workers in this study said that it is difficult to carry out necessary actions in these cases. This is somewhat contrary to Booth and Booth (2005), who argue that these mothers often have their care skills tested by the court. Child welfare workers in this study argue that more cases should receive necessary actions before the children develop behavioral problems as a result of neglect.
The study that has been carried out has several limitations. The number of participants is low and therefore does not give ground for generalization. The findings still give a foundation for discussing important elements concerning how child welfare services relate to mothers with intellectual disabilities. Another limitation is the one-sided focus on mothers in the interviews, which is also characteristic for other studies in this field of work (Sagatun 2011; Østerberg 2010). Participants in the study discuss mothers, while fathers are not given any attention. It is clear that even though fathers are not usually of concern to child welfare, they might actually still play an important role in the care of the child. Mays and Sigurjónsdóttir (2010) have carried out a study where either the mother or the father or both are intellectually disabled, and they argue that it is of great importance to take into account the role of the father in caring for the child and to treat him as an independent person. By omitting fathers in this study concerning the assessment of parental care, one ends up in danger of under-evaluating resources in the child's immediate care environment. We believe in retrospect that the role played by the father should have been raised in the discussion by us as researchers, and will be remembered in future studies.
Our conclusion is that mothers with intellectual disabilities are particularly demanding in terms of recognition, appropriate measures and assessment of ‘good enough care.’ The normalization ideology and the strong position of the biological principle in the field may have made it difficult for child welfare workers to gain support for acting in the child's best interest when it cuts across the interests of parents and their needs. When child welfare workers' experience-based knowledge is not given sufficient value in the field of social work, it probably helps to reinforce this image. Child welfare workers in this study expressed the need for the development of measures for these mothers in particular, as several of the findings presented in the preceding also show. They are also doubtful of the mothers' development and potential to change when it comes to caring competence. Further research in this area should aim to develop methods that can turn child welfare workers' experience and expertise into ‘appropriate action’ so that appropriate measures can be implemented before children develop behavioral problems, or as Lundstøl (1999) and Schön (2001) argue: to find just the right actions adapted to the group of mothers and children concerned.