Can Systematic Justice Be Achieved for Parents with Intellectual Disabilities in Deprivation of Custody Cases?

Abstract

This case report is a reflection on the cumulative results of a number of research projects conducted in Iceland in the field of parenting with a disability. The underlying research consisted primarily of an analysis of court case documents and interviews with parents, extended family members and relevant professionals. The contribution that follows emerged out of a question that we posed to our overall research findings and experiences—what does justice look like for parents with ID who have to contend with deprivation of custody orders? In the rare instances in which a parent ultimately prevailed over an unjust deprivation order, this was only accomplished after an extensive fight through the court system, after which, a great deal of harm to the family had already been caused. We offer for consideration a close look at one such case that we followed, the aftereffects of which are still ongoing. The other path to success appears to be that of early intervention, but this typically occurs through happenstance and requires the involvement of a network of progressive professionals and fortuitous timing. Our contribution is a call to discuss what justice looks like and how this may be transformed into something more systematic.

1. Introduction

This contribution is offered as a discussion oriented toward scholars, activists and advocates who work with or support parents with intellectual or developmental disability (ID/IDD) who come into contact with children’s protective services. Our specific focus is on deprivation of custody orders (Is. forsjársvipting). According to Icelandic child protection legislation, the court may deprive the parent or parents of custody if the child protection committee finds that the child may be at risk due to the lack of fitness of the parents due to, among other things, ‘mental instability’ or ‘low intelligence’ [1]. For many years, both authors have been conducting research in this area in Iceland and we have observed numerous times that once a child protection case involving parents with ID has become a matter for the courts, the outcome, almost without exception, favours the will of the child protection system. In the rare instances in which a parent ultimately prevailed over an unjust deprivation order, this was only accomplished after an extensive fight through the Icelandic court system, after which, a great deal of harm to the family had already been caused. We offer for consideration a close look at one such case that we followed for numerous years, the aftereffects of which are still ongoing. The other path to success appears to be that of early intervention, but this typically occurs through happenstance and requires the involvement of a network of progressive professionals and fortuitous timing. We offer an example of such a case but argue that this, at least in our experience, is not common and is successful despite, not because of, the formal system. Ideally, the long-term solution would be a progressive child protection system that is not ableist in its ideologies and practices. However, the research in Iceland over the last couple of decades, and even older research abroad, suggests that these are deeply entrenched practices and the system is resistant to change and are by no means unique to Iceland. Our contribution is a call to discuss what justice looks like in this context and how this may be transformed into something more permanent and systematic.

2. Materials and Methods

What is offered in the following sections are two cases drawn from our collective research experience—one as an example of early intervention and one as a victory, of sorts, through the courts. These are offered as exemplars of what justice could look like, with the caveat that these are rare examples and not indicative of most of the cases in our collective research experience. This paper was informed by a number of years of collaborative research projects between the authors; the primary data were analysed from a ground theory perspective (e.g., [2,3,4]) of deprivation of custody case materials and interviews with relevant parties. The analysis of these materials was further informed by a collection of theoretical stances drawn from disability studies, anthropology and cognate disciplines. The earliest material was drawn from the doctoral project of the first author which began in the 1990s and led to a doctoral dissertation which focused on the support services offered to parents with intellectual disabilities [5]. This later led to a collaboration between both authors in 2014, a project entitled “Family Life and Disability”, funded by the University of Iceland’s Research Fund. This multi-year project analysed a national sample of publicly accessible deprivation of custody court cases (at both the municipal and national court levels) between the years of 2002 and 2014. This included a total of 56 cases, which is somewhat significant considering the small size of the Icelandic population. Each case was read and coded to perform a thematic analysis, and later, a comparison was made between cases that concerned parents with ID and cases which did not. Distinguishing between these cases was difficult considering the extent to which child protection services and their lawyers would suggest or insinuate ID was involved even if the parents were not diagnosed as such. Another project followed in the wake of this research (“Disability, Immigration and Multigeneration: Intersecting Factors in Child Protection Cases”, University of Iceland’s Research Fund), building upon the earlier findings and methodologies while extending the research to incorporate the factors of intergenerational effects and immigration status. Our knowledge base continued to expand, informed by personal experiences, case research conducted on our own, and the work of graduate students in this field that we supported. Both projects were assessed by the University of Iceland’s ethics review committee, who found no reason to oppose the research. We situated our research in the framework of collaborative research in which parents are actively involved in the process. This ranged from consenting to tell their stories and having their perspectives on their cases heard in our publications, to actively assisting their lawyers, and more recently, working with parents as collaborators and co-authors at conferences or in academic publications. This was part of our applications for ethical review. All materials that are not publicly accessible, such as extended case documents, were discussed with the parents in interviews during which, it was mutually decided what materials could be used in publications and how the materials would be presented in light of privacy issues. We have omitted or altered certain details in order to protect the privacy of the parents, children and family members involved. As Iceland is a small society, the potential for recognition is high and as such, the number of children, their genders, place of residence and other such potentially identifiable details have been omitted or altered.

3. Context and Theoretical Framework

Throughout our collective research experience in this field, we have consistently posed a set of questions toward our data in an attempt to make sense of what we were seeing, reading and hearing. A cursory skim of the introduction to one of the typical deprivation of custody cases concerning parents with ID that we analysed would, at first glance, reveal nothing particularly untoward. The highlights from parenting assessments and the case history concerning accusations of parenting abuse or neglect would be stated, and we would wonder, briefly, if we were wasting our time as the justification for deprivation of custody would sometimes appear to be sound. However, as we dug into the cases further, and as our understanding of the matter deepened as the result of additional documentation provided by parents and/or their lawyers, and compounded by what we learned from interviews with parents, extended family members and critical professionals, inevitably we would wonder: How was this possible? How could such cherry-picked and shoddy evidence be accepted by the courts? The ridiculousness of some of the claims, the bungled timelines and facts, and the dubious nature of some of the evidence provided by so-called experts should have been obvious to everyone involved in the case, as well as the sub-standard, inappropriate or even non-existent family support. We could not understand why the justice system did not seem to see what we did. Occasionally judges would appear sceptical about certain claims and ask poignant questions, but for the most part it would amount to nothing of significance and the trajectory of the case would continue along to its seemingly inevitable conclusion of deprivation of custody. In the analysis process, we noted certain patterns that emerged from the data. For example, at one stage in our research, we became aware of how notifications of abuse and neglect were made and used as a form of evidence in their own right, despite serious deficiencies in their value as such [6]. In one complex case, we spent several months dissecting the evidence and it was only after this process did we come to realize the problematic ways in which notifications functioned. This may not be apparent to others involved in the case but it could indeed be a factor, along with the discretion and trust allocated to members of bureaucratic organizations such as the police [7] and, in this case, child protection workers and by extension their hired experts. Unless the lawyers for the parents presented compelling counterevidence, it is understandable why judges would place their trust in claims made by the child protection system, and we can appreciate this. We encountered cases of clearly demonstratable abuse and neglect, enough to confirm how critically important child protection services are. We did not always disagree with deprivation of custody even if the path to that conclusion was sometimes problematic. However, we contend that the impetus driving the cases pertaining to parents with ID specifically, and the lack of interest in rigorously examining the evidence (or seriously considering the counterevidence), is the core belief that parents with intellectual or developmental disabilities should not be parents under any circumstances. Deprivation of custody cases which involved concerns about, for example, parental drug abuse, were, in our view, framed as parents who were seen as ‘normal’ but with a problem that could hopefully be addressed through the successful completion of a treatment program. Custody termination was only sought if such treatments were proven ineffective. In contrast, parents with ID have to fight an uphill battle to demonstrate that they could be parents at all; the burden of proof is therefore reversed and placed upon parents to show that they can parent in general and whose impairments were seen as an insurmountable problem. Child protection workers and legal professionals are not alone in holding these views. As researchers, we have often noticed how surprised colleagues or social acquaintances outside of our field have been when learning about our research, sometimes commenting with a variation of ‘they allow them to be parents?’ We argue that these beliefs are grounded in the history of 19th and 20th century eugenics and whose effects are still with us today.

Iceland has arguably functioned as one node in what Mitchell and Snyder [8] have referred to as the ‘Eugenic Atlantic.’ Mitchell and Snyder’s historical project made visible the intellectual origins of eugenics, which have often been overshadowed by the murderous extremes of the movement which culminated in the atrocities committed by Nazi Germany. There is no question that virulent antisemitism played a significant role in Nazi ideology and practices. However, the Holocaust began with the murder of disabled people. In the early phase, this did not provoke much in the way of a reaction from the German medical establishment, nor those of other nations in the North Atlantic for the crucial reason that they all shared the same eugenic ideologies which target so-called ‘inferior populations’ and ‘useless eaters’ who were seen as a social and economic burden upon society. Mitchell and Snyder contend that the expansion of the Holocaust through targeting other populations resulted in the condemnation that arose at the conclusion of the war: “In other words, one could effectively assume that if the Nazis had not moved from the persecution of biological ‘deviants’ to the extermination of racial, ethnic and sexual minorities, the imaginary line between ‘medical intervention’ and murder would not have been crossed” ([8], p. 845). While the other nations that participated in this Eugenic Atlantic at the time did not go so far as Nazi Germany, they did pursue targeted sterilization and segregation of specific populations. The important point to make is that many of the nations of the North Atlantic that joined in the condemnation of Germany after its defeat shared the same core belief concerning disability: “Even among countries that were engaged military enemies at the time, scientific and cultural agreement about the menace of ‘defectives’ transcended battlefields and diplomatic impasses as an ideological formation” ([8], p. 846). Iceland, while a relative late comer in eugenics compared with the other Nordic nations, followed similar practices, particularly in regard to people with intellectual disabilities. This included involuntary sterilization and segregation into institutions. Often framed in humanistic discourses as ‘protecting’ disabled people, particularly women, the intent was to prevent the biological reproduction of populations deemed to be deviant or unfit. While eugenics fell out of favour in the mid-twentieth century once the atrocities committed by Nazi Germany were laid bare to the world, Iceland continued the practices of institutional segregation as well as coerced sterilization, for example, sterilization was a pre-condition for the transition to smaller group homes well into the 1970s and 1980s [9,10,11].

It is a mistake to assume that these practices and modes of thought have vanished in the first quarter of the 21st century, despite some appearances of progressive change in attitudes. The principles of normalization, which emerged primarily from Denmark in the 1960s, held that institutions needed to be reformed in order to approximate, as much as possible, the routines and rhythms of ‘normal’ or non-institutional ways of living. Yet, this appeared to not extend to the idea of people with ID having children and forming families, and evidence suggested that some 50 years after the emergence of this ideology, there have also been pushes to return to larger-scale institutions as housing options [12]. The deinstitutionalization movement, which pushed for the closure of all institutions to be replaced with community living options, also proved to be problematic in this area, with independent living often meaning, in practice, cluster apartments or shared accommodations. While in many ways preferable to traditional institutions, these arrangements still reflected the belief that some populations of disabled people could not, or should not, be parents and head families. Further, the gradual increase in size of shared accommodation residences has led some scholars to interpret this as a form of ‘reinstitutionalization’ [13]. One outcome of the ascendancy of the deinstitutionalization and independent living movements of the 1990s and 2000s is that certain populations of disabled people, who had in the past been unable to govern their reproductive capabilities due to sterilization or segregation, now had the opportunity to have children and form families and thus causing alarm among the child protection authorities. Unable to prevent such pregnancies to the same extent as the past, the contemporary reaction is to remove children from such parents after birth. McConnell and Llewellyn [14] remarked that “successive international studies have reported unusually high rates, in the range of 40 per cent to 60 per cent, of children being removed from their parents with intellectual disability” ([14], p. 297). It is important to note that many of the deprivation of custody cases that we encountered concerned parents who probably would not have been living in institutions in the past, and whose intellectual impairments or limitations may have been recognized but they would generally have had a role in society. A common tactic that we encountered was to collapse the category of intellectual disability to include those with formal diagnoses of mild or borderline ID as well as those who were merely evaluated as having scored on the lower end of normative evaluations using IQ tests as an indicator. We also found evidence that IQ evaluations sometimes lowered over the duration of the case, which we interpreted as efforts to exaggerate the severity of the parent’s impairment. Sometimes an insinuated or suspected ID was enough to label a parent as such and the case proceeded along this assumption. This ID label played a significant role in how the case was argued and how the case data were interpreted, regardless of the accuracy of the diagnosis [15,16].

The first decade of the 21st century has also witnessed a significant turn toward advancing the human rights of disabled people in 2006 with the creation of the United Nations Convention on the Rights of People with Disabilities [17]. Prominent legal scholar of disability rights Gerard Quinn [18] argued that the importance of the CRPD cannot be overstated, as it blends together the form of a standard non-discrimination treaty, which prohibits unfair treatment, with substantive rights. In other words, actual material support is required in order for disabled people to enjoy the benefits of these rights and without which, these rights would only remain as rights on paper. As such, the articles of the Convention speak to many areas of daily life, “identifying what extra was needed in order to give equal effect to these rights and to tailor them in the context of disabilities” ([18], p. 247). Article 23 (“Respect for Home and the Family”) of the CRPD denotes the right of disabled people to maintain their fertility as well as prohibiting deprivation of custody on the basis of disability status: “In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents” [17]. As Quinn argued, here, we have an anti-discrimination clause (prohibiting deprivation of custody on the basis of just being disabled) but it is complemented with a positive duty, a substantive right that is also found within the Article: “State Parties shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities” [17]. The government of Iceland signed the Convention in 2007, but it is widely known among disability scholars and activists in Iceland that successive governments have not made ratifying the CRPD a priority, and this was only accomplished in 2016. Further, the Convention still needs to be transposed into Icelandic law and additional foot-dragging on the matter is likewise obvious as the first draft of the bill to do so only began to circulate for comments in late 2024. In our view, the lack of interest in the CRPD and disability rights appears to be widely shared among most political parties in Iceland despite differences in other areas.

Returning to our opening question about why the legal system so often sides with child protection in matters pertaining to parents with disabilities, despite the evidence routinely being so weak, we contend that forms of culture are indeed at the root of this. McConnell and Phelan [19], drawing upon practice theory informed by the work of Pierre Bourdieu [20] and Anthony Giddens [21], contend that practices “are learned and routinized ways or modes of responding, including ways of knowing, desiring and doing,” and that “routine social responses to the sexuality and reproduction of people with intellectual disability can be read for the schema they encode, and this schema is eugenic” ([19], p.1). This approach sheds some light on why the child protection system appears so predisposed and at times outright hostile toward the idea of parents with ID merely being parents. Extending McConnell and Phelan’s observation that such schemas can be extended to organizations, we would also include the child protection system along with the justice system in such an analysis. Quinn [22] argues that there is indeed such a thing as a legal culture, which “involves a set of unstated values that underpin the legal order as well as a set of assumptions that guide how legal institutions like courts ought to behave” ([22], p. 20). Modern social scientists tend to view culture in terms of change, fluidity and hybridization, eager to incorporate new forms and ideas, but it will always be cautious about this, as seen in culture’s alternative tendency for traditionalism and reactionism in the face of rapid change (see, e.g., [23,24]). Quinn suggests that the legal system is perhaps even more conservative than culture in general, particularly when pertaining to the incorporation of new ideas. Following the work of Karl Klare [25], Quinn contends that legal thinking changes slowly and often only as the result of case precedent, not social or political innovations. “It is pretty plain that some innovations of the CRPD do not fit with orthodox legal culture. It is no surprise therefore to see States hedging their bets when it comes to law reform” ([22], p. 22). While efforts to change ideas and attitudes about disability in the larger society are critically important, we have often mused that legal change will only happen through rigorous engagement with the legal system as Quinn suggests.

4. Results

The question that drove this retrospective look at our collective research asks, What does justice look like for parents with intellectual disabilities in deprivation of custody cases? What justice looks like, we contend, in part takes the form of establishing a number of legal victories through challenging deprivation of custody orders through the courts. By this, we mean a court rejection of the demand from the child protection committee for deprivation of custody and the subsequent provision of appropriate assistance to parents in their child-rearing duties as delineated in the UN CPRD, Article 23 [17]. When and wherever possible, we have assisted parents, their families and their lawyers through providing our insights into the workings of the case for what it is worth, when such requests have been made. However, after observing cases in which a parent has prevailed, this entails costs—not just in time and energy but emotional costs. Of the very small number of cases we are aware of in which parents have prevailed in some way, this typically happens only after damage has been done, and after numerous appeals during which time the children have been removed and placed into foster care. While not indicative of all foster care arrangements, we are aware of children who have suffered various forms of violence in this system, all of which could have been avoided if proper supports were in place at an earlier stage. Parents also have to contend with the loss of their children and endure struggles to maintain visitation after loss of custody, in conjunction with the loss of the material benefits; these parents are often already socially and economically marginalized, either though reduced benefits or wage losses if visitation hours are scheduled during the workday. Some scholars have referred to this as system abuse [26] in which policies and practices intended to protect children and their families can instead cause harm. We offer for consideration one case as an example of such, which we have followed for many years to the point where we are now observing the inter-generational ripple effects as some of the children age out of the foster care system. These children, now older teens and transitioning to young adulthood, have to contend with various forms of trauma as they begin their adult years as a result of the deprivation of custody process, disrupted relations with parents and extended family members, and their experiences in foster care. As such, what looks like justice in cases like this appears more as a pyrrhic victory in which, hopefully, at least some legal precedent has been set and lessons learned, though at great harm to the parents and children in the process.

The other facet of what justice looks like that we have observed is that of early intervention in which efforts to support parents appear to have worked to an extent and prevented the rush toward deprivation of custody that would typically happen. The goal here is to prevent the case from becoming a deprivation of custody case before the courts in the first place as, in our experience, the margin of victory for parents is very slim once a case moves into the legal system. Another goal is to keep the case and provision of support within the local social services system rather than the child protection system. Sometimes, due to progressive workers in the system, access to legal counsel and the intervention of advocates, the supports seem to work and deprivation orders are avoided, at least at that time. In such cases, early intervention is the key, and the question then becomes how to turn early intervention from happenstance into a systematic approach. We offer for consideration one such case as an example of early intervention as a path toward justice in this area.

4.1. Early Intervention

We came to the realization early in our collective research experience that examples of parents prevailing over child protection demands for deprivation of custody were practically non-existent once the case moved into the courts. It is important to note that our knowledge about this is based on court cases that have been adjudicated. The typical pattern in cases concerning disabled parents was that of repeated notifications to child protection, followed by lacklustre or non-existent support and then the gradual move toward deprivation of custody. Unlike cases of clearly demonstrable abuse or neglect where the child is at immediate risk of harm, in the kind of cases under discussion here, it appeared that child protection was unwilling, or unable, to provide the long-term support that could be offered by the municipal social services. Action was then taken when the number of notifications continued to build, which suggests that in the early stages, the child was not seen as being at immediate risk. A preferable path to justice in a different scenario is that of early intervention and support provided through social services rather than child protection which appears to operate in more of a crisis mode mentality. One such case involved a woman with multiple diagnoses including autism and mild ID. Her social support network was practically non-existent, and the system became aware of her when she presented herself to the emergency department at a hospital complaining of abdominal pain. It was discovered that she was pregnant and shortly afterwards, she gave birth. As the result of her disability status, lack of support and lack of knowledge that she was pregnant, the healthcare workers contacted the child protection authorities. One area of disability rights in Iceland that is rather progressive is the office of the Disability Rights Protection Officers (RPOs), who are public officials operating under the Ministry of Social Affairs and Labour and who are tasked with safeguarding the rights of persons with disabilities. The positive impacts of RPOs have been noted in recent research in Iceland, despite the office being underfunded and the RPOs overworked and understaffed (see [27]). In the case under discussion here, it was also decided that an RPO should also be contacted. It was later learned that child protection’s initial reaction was to place the infant into temporary care based on the assumed lack of ability of the mother to care for the child and the view of some healthcare workers that she posed a danger to the infant. A lawyer with experience in disability rights was contacted and decided to act as an advocate on the mother’s behalf.

In this case, both the RPO and the lawyer were able to act fast, and also had access to what was being written about the mother at an early stage of the case. The RPO immediately noticed, for example, discrepancies between the initial reports written by a psychiatrist and the compiled report by child protection. For example, the psychiatrist saw no evidence of psychosis on the mother’s part, which was juxtaposed with a report written by child protection which claimed that there was evidence of psychosis. This also extended to information compiled by workers hired to observe the mother, with one stating that the mother was unable to follow guidance and direction with another report a few days later written by another worker who stated that the mother takes guidance well. The mother stated that the only information she was given in the hospital was in reference to things that she did wrong, and nothing about what she was supposed to do and how. In an analysis of the case materials, it was plain that an emphasis was placed upon the mother’s lack of knowledge that she was pregnant, with her diagnosis being used as an explanation for this. A second key theme was her lack of knowledge about parenting, despite never being a parent previously. The rapid alignment among the medical staff and the child protection workers on the views that the mother was incompetent was apparent. The lawyer, after examining the evidence and the conflicting claims, argued that there was no convincing evidence in either the medical records or the psychiatrist’s evaluation which demonstrated incompetence and inability to parent, provided that proper support was implemented. Yet the groundwork for deprivation of custody was being laid early and rapidly, with the RPO reporting that meetings were being held and decisions were being made which excluded the mother and her advocate.

The case was indeed a struggle from the very start and there initially appeared to be little evidence of any intention on the system’s part to provide the mother with meaningful support. The lawyer argued that there was no basis for child protection involvement and nothing in her behaviour, conduct or demeanour in recent months which justified child protection intervention. The mother’s lawyer demanded that support be provided through the local social services and that court-appointed assessors with knowledge of supporting parents with intellectual disabilities and/or autism, as well as an assessor with expertise in disability studies be provided. Based on this assessment, appropriate services for the mother should be designed and child protection’s role should be that of coordinating all parties involved in supporting the mother and child. Child protection made it clear that their intention was to place the child into foster care and it was only after the lawyer’s objections was it agreed that a temporary foster care arrangement would be put in place. This was implemented and an arrangement was made in which the mother and child could still be together but under supervision. This was unusual in our experience but there still seemed to be no consideration of any long-term support, which the mother would require and is entitled to, as everything was done ad hoc for the short-term, and did not provide much in the way of preparation, consultation or notice. Child protection’s proposal was the placement of the mother and child in this arrangement for up to two months while systematically reducing support without any seeming awareness that such parents would need long-term support that should evolve as the child ages. The lawyer objected to child protection’s plan and cited a long list of domestic laws and operating procedures, as well as international human rights agreements, which child protection’s actions violated. This legal pressure appeared to force the child protection authorities to pause in their push for deprivation of custody, but it was not until six months after this that the mother was allowed to test her parenting capacity in her own environment. This case is not offered as an example of ‘success’ per se, rather of what kinds of early interventions and efforts are needed for the possibility of any other outcome than immediate foster placement. It was clear to any critically minded observers in this case that without this early intervention, the child would have been removed from the mother shortly after birth and placed into permanent foster care. It was this intervention that at least gave the mother a chance to demonstrate her parenting capacity, without which, we all knew what would have happened.

4.2. A Pyrrhic Victory

In the rare instances in which a parent ultimately prevails over an unjust deprivation order, in our experience in Iceland, this is only accomplished after an extensive fight through the Icelandic court system, at multiple levels, and long after which a great deal of harm to the family has already been caused. The case we are using as an example is one which we have been following for over a decade, through the documentation, through the mother and later a close family member who acted as an advocate, and which appears in a way to be no closer to a form of closure for the family after all of these years. While the highest court in Iceland ultimately ruled the original deprivation order was unjust, this was only accomplished long after the children had been through the foster care system for a number of years. All of them are dealing with varying forms of trauma as a result of their experiences. Due to the sensitive and ongoing nature of the case, certain details have been omitted or written with as little specificity as possible.

The mother at the centre of the original case retained custody of her children during their early years, and only appeared to struggle as the children became older. Some of the children have various diagnoses and began to exhibit challenging behaviours, and numerous notifications about yelling and abusive language emanating from the home prompted child protection to act. The mother lost custody of her children on a temporary basis and then permanently one year later. During this time, she fought hard to keep her children. Initially, she struggled alone as she felt the situation was so shameful that she hid it from her closest relatives, but this also removed a great deal of potential support. When the extended family learned of the situation, they wanted to find ways to assist the mother and her children, but it was too late to reverse the situation for the reasons discussed earlier. Like other cases we have analysed, once it reaches a certain stage, it seems impossible to reverse course and child protection usually remains committed to their plans. The children were initially sent to live with a couple in what could be described as an unofficial ‘group home’ for fostered children with various diagnoses in another municipality. The mother was allowed limited visitation, two hours per month under surveillance in a child protection facility, even though the case was built on risk of neglect and without any convincing evidence of actual abuse or neglect in the case record. The mother formally requested increased visitation, which was ignored for two years. Only after a formal complaint was made to an agency that used to supervise the work of local child protection committees (and which no longer exists) could she meet with her children for four hours every month—and now including grandparents and other relatives who could also call the children on their birthdays. Prior to this change, all communication between the children and mother and relatives was strictly limited. Five years after the children were removed, the mother started a seventeen-month long process of seeking to overturn the original deprivation orders.

It would be fair to say the mother was traumatized by this ordeal. During the original custody termination process, the mother had another child. While criticisms of the mother’s actions under the circumstances would be understandable, in our view and estimation of her, she valued her role as a care provider and the loss of her other children negated her ability to fulfil this role. This has been recognized in the international literature [28,29]. One analysis interprets rapid pregnancy after these events as a grief response, but which also opens the mother to future child protection interventions [30]. During an interview in her home, we learned how fearful she was to go out in public with her baby. She was worried that if the child was crying in public that it might generate a notification to child protection. In reality, a crying infant in public is something that few would notice and see as anything significant. However, her actions and fearful emotions suggest the extent to which she has internalized the surveillance and evaluation of her parenting that she had experienced for years. In the significant number of documents the case generated, it is stated that there was no evidence of substance abuse and that the mother’s life is orderly, her lifestyle is healthy, that she had taken good care of her children while they were with her, and that there are no worries about her housing or financial situation. In our visit to her home, we found that it was clean and orderly, and we were cynically amused by reports from a psychologist which made negative comments about such trivial things such as her window curtains or that she had too many pots and pans in her kitchen. It appeared as though the system struggled to find negative things to write about in her case. The bonds between the mother and her children were said to be strong, but that the mother lacked insight into her own problems and her children’s needs. For example, one repeated mention of her inability to support her children was the challenges that will arise as the children grew older. We could understand this, but this is something that can be addressed with support. Each stage of a child’s development will require a different skill set and this applies to all parents. What we could not understand was the common complaint that, due to her perceived intellectual limitations, she would not be able to assist the children with their homework as their schoolwork became more complex. This is possibly true; however, we could never understand the criticism every time that we encountered it as there is an entire system set up to address this very issue—the public education system—for which there are various forms of educational assistance for children and none of which should be relevant in regard to deprivation of custody.

The entire arc of this case was incredibly long and drawn out and we realized that as researchers, one day, we will probably be interviewing the children as they age out of the system about their experiences when they become young adults. As researchers, we found the case exhausting and never-ending, and could only imagine how much more intense and emotionally fraught the experience was for the mother, children and extended family. One child eventually aged out of the system and during a period of time thereafter took to social media to lambast their foster care experiences and expressed intensely negative feelings about the child protection system, which is not unusual in our experience. The mother decided to fight to get a younger child back. The child missed her siblings and mother and as it stated in a court document, it was “heart breaking to see her laugh away her feelings and then burst into tears”. Oddly, the argument against the mother was that if her youngest child would go back to her, she would need to change schools and her local environment and friends, which would not ensure her ‘stability.’ This ‘stability’ matter was often raised and remains a baffling and perplexing argument, as children’s home lives, friendship circles and family ties are routinely ruptured as a result of deprivation of custody orders and foster care placements, yet the accusation of a threat to the child’s ‘stability’ is only ever applied against parents and never, in our experience, raised against child protection.

The mother ultimately won the case on the grounds that her situation had changed for the better and that her youngest child was isolated from her siblings and mother, and that it will be likely that she will seek out her family of origin when ageing out of the system just like her older siblings did. The family is now united but it is not without difficulties—so much harm had been done and ‘winning’ is perhaps not the most appropriate term to use.

5. Discussion

Both cases offered for discussion here are unique—a rare example of an early intervention that appeared to pause the immediate rush to deprivation of custody and allow for some meaningful support to be tried and assessed, and a case in which the disabled parent ‘won’—however, both cases can offer some lessons to be learned and also caveats. Despite the uniqueness of each case, they also contain so many common elements that were familiar to us from other cases that we are cautious about suggesting these cases represent any indication of positive developments on the part of these systems. Parallel to Quinn’s [22] point made earlier in the introduction about the resistance of the courts toward the recent changes in disability rights as seen in the CRPD, we are under no illusions that child protection will change on their own. As such, we contend that early intervention is the key, but it remains unclear how early intervention can be implemented as a systematic process rather than the happenstantial form it currently takes in Iceland. Until that happens, challenging the system through the courts and creating precedents and growing awareness is the fallback position and has some utility in this struggle, but this is also not tenable considering how slow the wheels of justice turn and the damage that is caused to children, parents and families in the process.

In the case of early intervention, in our discussions with the lawyer, we all agreed that without such intervention, deprivation of custody would have been the inevitable result. There were no family or friends in the mother’s corner and, prior to the RPO’s intervention, no one challenged the process and called out child protection’s practices. International research has also shown that informal support, such as neighbours and friends, are also critically important but under-researched in the literature [31], while others have stressed the importance of the role of independent advocates in supporting parents with ID [32]. We knew from experience that once the disability label was invoked, the discourse of ‘lacks insights into child’s needs’, ‘lacks ability’ and ‘unable to follow guidance’ would be invoked and followed by ‘all means have been tried’, all of which generally emerge from parenting capacity assessments, the validity of which have been questioned in the international arena for decades [33,34]. We also knew that counter-evidence from psychologists or system workers which challenged these views would be excised from the narrative produced by child protection once the deprivation of custody stage was reached. What was new in this case was seeing this happening before us, and armed with this knowledge, the lawyer sought to challenge these claims before they became part of the accepted narrative. With the ‘pyrrhic’ victory case, in our view, early intervention would most likely have been extremely effective. The mother retained custody for a number of years when the children were young and we could tell from the records that the original case manager was not terribly concerned by the notifications, and she appear to interpret them as originating from a tired and stressed single mother. No doubt this was true, but we could not find much in the way of support that was offered, which was exacerbated by the mother’s inability to reach out to extended family for help due to her shame of having been brought to the attention of child protection. Further, without intervention, the number of notifications grew. To make matters worse, the tally of notifications was later used as a form of evidence against the mother (‘we now have X number of notifications’) when such notifications could also be interpreted as the result of inaction on the part of the system, a process which we documented in greater depth elsewhere [6].

6. Conclusions

Early intervention is crucial—not just on the part of child protection but that of legal support, advocates and family—in order to ensure that proper supports are implemented, the rights of the family are respected, and evidence is examined and challenged before the case turns into the familiar pattern we have seen many times before. However, while we offer the early intervention case as an example of how to prevent this, the missing crucial element is how to make this systematic. The mother is lucky that someone in the system had the knowledge to contact an RPO, and it was fortunate that a lawyer with significant knowledge of disability rights was involved. Raising awareness of disability rights and the role of RPOs among healthcare workers, educators and others who come into contact with children is a start, but the involvement of RPOs at the onset of the notification process when a case concerns disability should be a standard operating procedure. The goal is to create a positive duty; it is not enough to treat disabled parents ‘equally’, but they must be given the additional support they are due considering the adversity they have to contend with in a parenting role and from dealing with child protection itself. The alternative is bleak: deprivation of custody cases that are pushed through with minimal challenge or else pyrrhic victories in which long-winded challenges still result in extensive forms of trauma for all those involved. While case precedents are needed and will ultimately be helpful in supporting disabled parents who are unfairly treated by the system, preventing a case from becoming a case should be the ultimate goal.