Introduction
International research has found that parents with intellectual disability are overrepresented in child protection cases ( Lightfoot & DeZelar, 2016; Slayter & Jensen, 2019). Contextual factors such as poverty, social isolation, and lack of social support are known to be prominent features in these parents’ lives ( Powell et al., 2017; MacIntyre et al., 2019). Presumptions about child neglect, mistreatment, and not being able to attain new skills or benefit from support are among the biases held by professionals and child protection workers ( McConnell & Llewellyn, 2002; Laliberte & Lightfoot, 2013; Rice & Sigurjónsdóttir, 2018; Albert & Powell, 2021; Sigurjónsdóttir & Rice, 2023). It is also well documented that parents with intellectual disability can be effective parents if meaningful and appropriate supports are put into place, their social supports are strengthened, and negative views and expectations from the system are countered (see e.g. Llewellyn, 1995; Aunos et al., 2003; Booth & Booth, 2005; Mayes et al., 2008; Traustadóttir & Sigurjónsdóttir, 2008; Feldman et al., 2012).
Our analysis places the work of the rights protection officers for disabled persons (RPOs) in Iceland into the framework of critical disability studies, human rights and the United Nations Convention on the Rights of Persons with Disabilities (CRPD) ( United Nations, 2006) as the scholarly, legal and ethical underpinnings of how parents with intellectual disability should be respected and supported in the parenting role. We also apply the perspective of institutional justice capital, as suggested by Hamilton and Maslen (2022), to understand how the RPOs serve as a resource not only for parents with intellectual disability but also for the workers in the system.
1. Recent Developments in Rights Protection for Disabled People in Iceland
Legislation concerning disabled people in Iceland that explicitly referenced the notion of rights has existed in different forms since 1992. The Act on the Affairs of Disabled People 59/1992 (1992), Articles 36 and 37 are of specific importance here. The main purpose of those articles was to safeguard the rights of disabled people living in small-scale institutions and group homes. In 2010, following Iceland’s signing of the United Nations CRPD 2007, changes were made to the act which signalled a shift toward a greater emphasis upon disability rights in light of the provisions of the Convention. Representatives ( trúnaðarmenn) were then appointed to safeguard the rights of disabled people. Iceland’s signing of the CRPD, followed by formal ratification in 2016, continued to have an impact upon disability rights in the country as disability legislation was revised considering the anticipated ratification process. One such example is the 2011 Act on the Protection of the Rights of Disabled Persons 88/2011 . With the act, the position of rights protection officers for disabled people (formerly named representatives) was created. Rights protection was expanded from being primarily concerned with safeguarding the rights of disabled people living in small-scale institutions to safeguarding the rights of all people who self-identify as disabled persons in all aspects of life ( Ministry of Welfare, 2013). The main aim of the act is to ensure that disabled people are provided with appropriate support in safeguarding their rights, ensure that their right to self-determination is respected, and that their legal rights are protected when urgent interventions in their life are required. The act states that rights protection for disabled people should be threefold. First, the act includes the implementation of the Ministry’s 1 rights monitoring unit, which is responsible for collecting information about rights-related matters for disabled people and providing relevant education and information to various stakeholders, including disabled people themselves, their spokespersons, and service providers. Second, an important inclusion is a provision for a personal spokesperson for disabled people ( persónulegir talsmenn fatlaðs fólks), if so required. The spokesmen provide the disabled person with support in safeguarding their rights and taking care of their personal affairs, such as decision-making in their personal lives or assisting with their finances. The personal spokesman is, when possible, chosen by the disabled person.
Thirdly and of most importance for this contribution, a key development in the above-mentioned legislation is the creation of a special Office of Rights Protection for disabled people funded by the Icelandic government. The rights protection officers for disabled persons, hereafter referred to as RPOs or officers, are responsible for monitoring the circumstances of disabled persons and are available to assist them in securing their rights. According to the Rights Protection Act, there should be eight officers serving seven different regions of the country, which includes approximately 380,000 inhabitants ( Statistics Iceland, 2024). The officers are hired by the Minister of Social Affairs and Labor after receiving a comment about potential applicants from the Icelandic Disability Alliance. RPOs are not required to have a specific educational background but to be knowledgeable and experienced in the affairs and rights of disabled people. Anyone may notify and is, in fact, required to notify the office if they are concerned that the rights of a disabled person may have been violated. RPOs can also initiate a case by their own initiative. RPOs, in conjunction with the disabled individual in question, may assist in investigating the claim and support the individual in pursuing a remedy. Such remedies can, for example, be actions to initiate a formal process for claiming improvements in services or, if necessary, send a formal complaint to either of the two governmental bodies that oversee surveillance in the matters on the rights of disabled people. What seems to set this safeguarding mechanism apart from many other countries is that the Office of Rights Protection and the officers working within it are able to assist in cases on an individual level, whereas it seems more common that safeguarding mechanism elsewhere involves primary an emphasis on education and awareness-raising about the rights of disabled people (similar to the purpose of the rights monitoring unit described earlier) (Ministry on Welfare, 2013). In recent years there has been an increase in cases that are reported to the office. In 2021, the office received 4028 notifications about possible human rights violations, which is an increase of 1725 notifications from the year 2020. The reason for this increase is unknown. In general, the notifications most often come from disabled persons (32%), their closest relatives (27%), or service workers (26%). In most cases, the notifications are about insufficient services (24%,) the need for support in an ongoing case (19%), lack of services (12%) and violence (10%) ( Rights Protection for Disabled People, 2021). It is not known how many cases are pertaining to parents with ID.
2. Theoretical Context
The analysis presented here on the role of rights protection officers regarding supporting parents with intellectual disability and their encounters with child protection services draws upon two key perspectives. The first is the disability human rights perspective, largely inspired by the CRPD and disability studies scholars working in this area. The Convention provides the legal (and arguably also moral and ethical) framework in which child protection in Iceland should work within when a case involves disabled parents. Our analysis draws attention to how this regularly falls short and the vital role that RPOs play in attempting to rectify these injustices. The second draws inspiration from the concept of “institutional justice capital” as outlined by Hamilton and Maslen (2022). While Hamilton and Maslen focus on marginalised families in Australia that come into contact with child protection, there is enough overlap with the situations faced by parents with intellectual disabilities in Iceland to adapt their work for our purposes. The institutional justice capital perspective suggests that the RPOs could be seen as a vital resource for the parents to ensure that the child protection process is transparent, respective to the human rights of disabled people, and which results in just outcomes for families.
2.1 The Human Rights Perspective and Parents with ID
Disability studies emerged from the disability rights movement which, in turn, grew out of a larger push for various civil rights that occurred in the global north in the 1960s and 1970s. Intellectual and political agitations against varied forms of oppression, discrimination and socio-economic segregation have been at the forefront of the disability rights movement since its earliest days ( Oliver, 1990; Traustadóttir, 2006; Shakespeare, 2014). However, the CRPD has been referred to as a “paradigm shift” in the area of disability human rights ( Degener, 2016) in how disabled people are highlighted as rights holders and human rights subjects. This perspective challenges the view in which disabled people are seen as problematic and instead claims that social arrangements and environments are the major contributors to the many barriers disabled people face in their everyday lives. For the purpose of this article, and with regard to disabled parents specifically, Article 23 of the CRPD (Respect for Home and Family) and Article 13 (Access to Justice) are particularly significant. For marginalised groups, such as parents with intellectual disability, access to justice has been highlighted as fundamental to realising human rights in general. The ratification of the CRPD has arguably influenced Icelandic legislation in relation to parenting. In late 2018, disabled parents were, for the first time, mentioned in an Icelandic act of law in relation to services and support ( Act on Services for Disabled People with Long-Term Support Needs, 2018, 38/2018). The act places responsibility on municipal social services to provide disabled parents with appropriate support to fulfil their parenting duties.
One key issue with the CRPD is its applicability to child protection interventions concerning families headed by parents with intellectual disabilities. The international literature (e.g. Collins et al., 2018; MacIntyre et al., 2019; McConnell et al., 2021; Powell, 2022) and the Icelandic literature (e.g. Sigurjónsdóttir & Rice, 2018; Sigurjónsdóttir et al., 2019; Sigurjónsdóttir & Rice, 2020; Rice et al., 2021; Stefánsdóttir et al., 2022; Stefánsdóttir et al., 2023) have highlighted several issues, such as difficulties by parents in understanding the complexities of the child protection and legal systems, poor working practices on the part of the child protection system, inappropriate or inflexible supports, and that the justice systems are inherently ableist. These studies also highlight the importance of early interventions to prevent later harsh measures, such as custody deprivation, and the critical importance of advocates on behalf of the parents whose views are listened to and respected. In the absence of demonstrable child abuse or neglect, custody deprivation is still possible if the child protection authorities present an argument based upon the risk to the child’s future well-being or development under the continued custody of the birth parents. It is in such cases where the parent’s disability status figures prominently and where the need for knowledgeable advocates, supporters and counter-experts is urgently required.
2.2 Institutional Justice Capital
Hamilton and Maslen (2022, 539) define institutional justice capital broadly as the focus on “the capacity and resources to understand, navigate, and communicate fairly and equitably in all aspects of the criminal justice process”. Extending the work of Cloud and Granfield (2009), Hamilton and Maslen (2022, 538) apply this to the child protection system in Australia to consider factors included within institutional justice capital such as “recovery capital” (“personal resilience skills and resources”); “social capital” (“family, peers, networks”); and “community capital” (“access to training and education to reduce stigma”). However, attention needs to be paid to whether these resources are available and form part of the justice system itself, as for example, CRPD’s Article 13 that demands the inclusion of procedural and age-appropriate accommodations. Furthermore, Hamilton and Maslen consider the dynamics of family and generation regarding access to these forms of capital. They write: “Families involved in child protection now more commonly experience child removal across generations, and distrust of the system presents barriers to accessing and utilising resources in the community” ( Hamilton & Maslen, 2022, 539). The authors are writing primarily here of Australia in the context of aboriginal families, but there are some parallels that can be drawn with the international literature pertaining to families of people with intellectual disability. While some research has shown that children who have been removed from disabled parents can demonstrate resilience and may do well (e.g. Collings & Llewellyn, 2012; Lightfoot & DeZelar, 2016), some qualitative work (e.g. Sigurjónsdóttir & Rice, 2020) points to similar inter-generational negative feelings about the system by parents and children as articulated by Hamilton and Maslen. Feelings of anger or mistrust toward the system, or shame for being the focus of a child protection investigation, can prevent parents from accessing the capital that can help them with their case. Another appealing facet of the institutional justice capital framework is that attention must be paid to whether these resources exist at all and the numerous barriers that can block access to these necessary resources. Our application of the framework is meant to support the position of rights protection officers as a critically important form of capital in helping disabled parents navigate the child protection system and the courts.
3. Methods
This contribution draws upon data collected from interviews with rights protection officers for disabled persons (RPOs) in Iceland. Their experiences were explored in order to understand their role and the challenges of their work. The specific focus of this contribution is how RPOs support parents with intellectual disability and safeguard their rights when they have become the focus of a child protection investigation. The data gathering and analysis was inspired by Charmaz’s (2014) grounded theory approach, which is rooted in social constructionism. The approach is inductive and allows certain flexibility for data gathering and analysing. The analysis itself was conducted using such an inductive approach that focused on patterned meanings that emerged from the data. This allowed for exploring the rights protection officers’ perspectives and understandings of their work through their own words, as well as to solicit their views as to whether, and to what extent, their efforts impacted on their cases. The study took part in Iceland and all eight RPOs who held either part-time or full-time positions at the time of the study were contacted by email and asked to participate. Altogether five of them accepted the invitation and three declined. In addition, one former RPO and one child protection worker participated. The former RPO was invited to take part as he was known by the researchers to have a great deal of experience working with parents with intellectual disabilities. At the end stage of the data analysis, the child protection worker was recruited. All seven participants in the research had some experience in supporting parents with intellectual disability in relation to child protection interventions. It is worth mentioning, that despite this small sample size, that the entire population of RPOs at the time of the research were only eight officers in total and therefore, it could be said that the sample is quite representative of RPOs in Iceland.
Data were obtained through nine semi-structured interviews. All interviewees participated in one interview except for two officers who participated in two interviews each. This format was chosen with the aim to encourage the participants to articulate in their own words their experiences and perspectives ( Kvale, 1996). An interview guide was developed to determine/articulate the domains of inquiry and acquire the core dataset from all participants. As the understanding of the subject matter started to develop, questions were added or removed from the guide. Participants were asked to describe their work with parents with intellectual disability with an emphasis on parents who were involved in the child protection system. Some examples of questions that were asked included: “Can you tell me about your work with parents with intellectual disability?”; “Can you describe the process you go through with parents with intellectual disability who are involved with child protection?”; “Who contacts you when there is a possible violation on the rights of parents with intellectual disability?” As proposed by Charmaz (2014), additional data collection was performed at the end of the first stage of the process, and participants were asked if they were willing to take part in the research again at a later stage of the analysis to elaborate and refine the categories identified from the data. For that purpose, an information-rich former employee of child protection was also contacted via email and offered to participate in the study. This helped to enhance the analysis, allowing us to compare the views of the RPOs on the decision-making process with the views of a child protection worker.
The first phase of the analysis included familiarisation with the interview data by repeatedly reading through the transcripts. Analytical ideas and first thoughts were noted down, followed by initial coding in which many of the key analytical themes emerged. The final coding process was performed to develop the final themes presented in this article. Seven interviews took place via computer-based applications and two were conducted at the researcher’s office. The interviews lasted 60 minutes on average. They were all recorded and transcribed verbatim. To protect the privacy of participants, and due to the small population of rights protection officers in Iceland, a decision was made to not describe participants in detail. Furthermore, all participants were given non-gendered pseudonyms. The overall study, of which this contribution is part of, was approved by the Icelandic Bioethics Committee and the Data Protection Authority (no. 14-062/-V1).
4. Findings
In the process of the data analysis, multiple themes emerged. After discussion among the authors, the decision was made to present four overlapping core themes. The first is Altering power relations. In this section, we explore what RPOs do for parents in a practical sense to illustrate the role they play in enabling parents to exercise their rights, and the forms of institutional capital they provide. Sometimes this means altering the power dynamics of the situation through the RPOs amplifying and supporting the voices of the parents. The final three themes draw the attention away from the parents and look specifically at the issues and barriers that confront the officers in their work. The first of these we call Lack of knowledge. While the lack of knowledge on the part of the child protection system in how to appropriately support parents with intellectual disability is well-known in the literature, the lack of knowledge we refer to here extends into the judicial system. Judges, not being well-informed about disability rights or what constitutes appropriate and meaningful support for those parents, as a result tend to defer to the authority of child protection and their hired experts. This dynamic is challenging for RPOs to counter. Another role of the RPOs seems to involve educating the workers in the system that what is at stake is more than about “service provision” but human rights. Iceland arguably enjoys an international reputation for gender and LGBT+ equality, yet according to our data, it seems that this thinking about equality often does not extend into the disability area. Some officers have commented that this association of Iceland with “equality”, while simultaneously not extending this to disability, poses some issues for their work. The next theme is Systemic apathy. RPOs articulated their frustration with the general lack of interest in disability rights, which extends to apathy as seen in poor attendance at meetings concerning disability rights by service workers, and which presents a serious barrier to the effectiveness of their office. The last theme we call Challenging the informal. While some of the key statements in the social sciences on bureaucracy and governance (e.g. Weber, 1922 [1978]; Herzfeld, 1992; Scott, 1998), as well as those in philosophy on governmentality and governmental rationality in the tradition of Michel Foucault (e.g. Burchell et al., 1991), tend to situate documents, dossiers, and the knowledge making activities of state agencies as oppressive, our argument here in this context is somewhat different. RPOs commented that one of their challenges in their work is fighting to ensure transparency in the process, so that the assessments and decision-making activities about parents are rendered even more visible. To do so, they have repeatedly insisted that the minutes of meetings need to be taken and disseminated and the decision-making process needs to be documented and made available to parents and their supporters in an attempt to safeguard their rights.
4.1 Altering Power Relations
As expressed by the rights protection officers most cases in which they are involved are about lack of or inappropriate services, support for visitation when a child is in foster care, objecting to or disputing out-of-home placements of children, support in dealing with and communicating with child protection workers and, in some instances, the judicial system in cases pertaining to custody deprivation. One key role the RPOs play is to simply to be present when parents interact with child protection authorities and the courts. In addition to making parents aware of their rights, they use their presence to “force” the system to take the parents seriously, to ensure that they are listened to and respected. The RPOs articulated that, in their experiences, the power dynamics in the child welfare context are skewed toward child protection workers, often leaving the parents powerless and vulnerable to unjust interventions. With marginalised parents, such as those with intellectual disability, power imbalance is an issue that needs to be addressed. In the interviews conducted with rights protection officers, mixed feelings were expressed about how effective they considered their contribution to be for cases involving parents with intellectual disability and child protection. However, most of them agreed that the involvement of an advocate with the expertise and disability-related knowledge influenced the process of how cases are worked in the system. The officers’ presence gave little room for the exclusion of the parents’ voices as the RPOs supported them in raising their concerns and gave them more leverage over the proceedings, as summarised by Norður:
The case is, unfortunately, that we are often escorting the parents to meetings, and we are there because, otherwise, they are not taken seriously. That’s really sad because we don’t have any formal power [. . .] but the reality is that meetings that we attend end differently than meetings where parents attend without us; they end differently and usually not well [. . .] the parents just don’t get the chance to express their point of view, and there are instances where something is decided in a meeting with a parent and later when we ask for the minutes, the already made decisions have been altered.
The powerlessness of parents with intellectual disability in their dealings with the system and the need for a strong advocate was evident in the responses from the RPOs. The power imbalance reached outside meetings and into venues supposedly designed to support and teach the parents. Logn described an instance where a mother had been placed at a residential parenting unit to observe her when taking care of her child and to teach proper childcare skills:
The workers were supposed to be the professionals [. . .] and there she was [a mother with ID] asking for painkillers for her baby, who cried and cried because of an ear infection. They didn’t believe her when she asked for medicine for an ear infection. They just said “No” and refused to give the baby something for the pain. It wasn’t until I called them and said: “Listen! Now you’re going to give her paracetamol”. It really needed the third party to call right before midnight and tell them. They didn’t believe the mother, even though the baby was crying with a high fever. Being far away, I had no idea if the baby had this infection, but I believed the mother. And as it turned out, she was right. This is happening in the year 2022! [emphasis added].
Getting results in an environment imbued with such power imbalances, as the RPO experienced, sometimes required them to be very strategic in how they approached each case and, at times, put on a tactically changing “cloak of power”. Rökkur said:
How big do I need to be at today’s meeting? Should I be the good Rökkur who gets people to play in my team, or do I need to be the tough Rökkur with all the rules and regulations laid out on the table? I really need to prepare for how I will appear at the meeting.
All the RPOs talked, in one way or another, about the importance of “taking space” in meetings that involved child protection and support services. That simply meant that they were not afraid of being critical of the services that were being implemented or work that had taken place in each case. That included, for example, asking critical questions and investigating if all appropriate support had been tried.
As soon as we step inside, the power structure changes drastically. We ask questions, ones that the parents have asked but have gotten no answers to [. . .] “How does that work? And who is supposed to do that? Who’s responsible for that to happen? Are you doing counselling? Support? or is this surveillance? and what are the differences?” (Rökkur).
The RPOs felt that by showing presence and asking demanding or critical questions had multiple effects on the work that was being done by the workers, one of which was to create more time. Slowing down the process not only gave the parents more time to act but seemingly also gave the child protection workers the opportunity to reflect on their own work and identify other service options.
It is all too common in child protection cases that for the sake of the child’s interests it is necessary to intervene quickly, but action is taken without particularly thinking it through, without demonstrating proportionality, but when there is pressure [from the RPOs] to perform of high quality and justify actions, more space for the process is created (Ariel).
Logn had a similar experience:
When I ask challenging questions, it makes way for different views of the case and new ideas to come forward, and it also changes how fast the child protection workers are able to work their cases.
By questioning the system instead of only the parents, the focus sometimes shifted, and the responsibility for the welfare of the family was not placed solely upon the parents but upon the system as well.
4.2 Lack of Knowledge
One role of the rights protection officers is to educate the parents on what their rights are and what kinds of support they are entitled to, but another appears to be educating workers within the system itself. It is difficult to understand how the rights of disabled parents can be respected within the child protection system if this knowledge is not in place, which was one issue that was repeatedly raised by the RPOs. Júlí, a former child protection committee member, spoke to this:
The committee is supposed to ensure that the work in a case was done properly. But the reality is that there was no expertise within the committee, the members just said “yes” to what the child protection workers proposed. When I was appointed to the committee, there were no requirements for knowing human rights or disability rights [. . .] I got no information or education when I started. The people who also sat on the committee had no specialized knowledge or knowledge of trauma or anything similar [. . .] and we got no education about the CRPD [. . .] so there was no factual discussion there. So it’s very easy for child protection to drive their decisions forward when parents have little or no support.
An RPO, Regn, felt that this knowledge was not entirely absent, but certainly lacking:
Knowledge about the rights of disabled people, the CRPD, or laws like 38/2018 within child protection just isn’t there. Sure, there are workers here and there who have the knowledge, and I’ve met those workers, and I just love them, and I really push to get them involved on the case [. . .] but knowledge in general, no! [emphasis added].
The RPOs interviewed also felt that the protections afforded to disabled parents in the Convention and the domestic legislation are “weak” due to the lack of knowledge and understanding of those documents in the judicial system, leaving judges in custody deprivation cases pertaining to disabled parents “insecure”. The judges’ insecurities and lack of knowledge of disability rights were argued by some of the RPOs to be the reason why they rely so heavily on the information provided by child protection and their paid experts (e.g. psychologists) when they make their decisions. Ariel stated: “There is little awareness about human rights and certainly not disability rights and what they entail in the judicial and child protection system”. This lack of knowledge was considered to have an impact on the process of each case and works against the possibility for parents with intellectual disability to be treated fairly by the system. Ariel continued:
Parents [with intellectual disability] who go to court with their case don’t stand a chance [. . .] There is a tremendous lack of knowledge within the judicial system on the Convention, on law 38/2018, and a lack of understanding about basic concepts like “disability”, “parenting capacity”, they don’t have a clue about what “reasonable accommodation” entails, there is lack of understanding on how psychological assessments are done so these psychologists can do what they want without any rationale [. . .] judges seem to believe that disabled people all live in institutions and are not people that can run a home and have a family [. . .] it can be extremely difficult to fight this.
As Ariel suggested, sometimes the issue is not a lack of knowledge, as in knowledge that is not acquired, but countering the “knowledge” that is already held in place, such as prejudice and stigma toward disabled people and their capabilities. Another related theme that emerged from the data is the tendency, as some officers noticed, for workers within the social services system to equate “equality” solely with gender or LGBT+ issues, while overlooking disability. Alex interpreted this as linked to Iceland’s reputation for equality in this area, and which is officially embraced by the state, yet which often overshadows issues connected to disability and which makes it difficult for their work to be recognised or valued in the same way:
Heaps of people within the government ministries attend seminars about the rights of gay people, LGBTQ people, women’s rights; they go to the women’s conferences and support international policy pertaining to equality strategies and gender equality in Iceland, but that is not the case when it comes to the rights of disabled people, there is absolutely no [emphasis added] interest! There is no interest within the government to secure that training in this area that is in accordance with international policy-making [. . .] and we can also talk about the Office of Equality, they have no knowledge about the affairs of disabled people, or due process or reasonable accommodation. Nonetheless that’s the institution that oversees all equality affairs in Iceland, but the focus is all on gender equality.
The lack of knowledge also appears to result in deference to the experts hired by child protection, such as psychologists who conduct parenting capacity or custody assessments. The RPOs indicated that the assessments produced by these hired experts appear to be accepted by the courts without question and which play a significant role in custody deprivation cases. Some of the RPOs expressed how the opinions of psychologists become almost incontestable in a courtroom setting, especially if their opinions align with the desired outcome on behalf of child protection. The view of how the courts “rubber stamp” the narrative put forward by child protection workers was expressed and Rökkur’s comments reveal how parents with intellectual disability have indeed very little access to justice when it comes to disputing the claims of child protection authorities:
We have taken a case to the court where a specialist in disability (on our client’s behalf) testified, saying that proper support was not provided and that did not change anything [. . .] because in my experience it is very rare for judges to be critical about the treatment of a case in child protection or go against what child protection is proposing.
The RPOs have also stressed that the views of the psychologists working on behalf of child protection, and the child protection staff themselves, are trusted and respected by the judges while in the process downplaying the views of the parents and their lawyers. This creates a mutually reinforcing and legitimising triumvirate between the psychologists, child protection staff, and judges, which makes it very difficult for counter-arguments to be heard and considered. While we do not dispute the RPOs’ experiences and contentions, which we have experienced elsewhere and noted in the literature, this must be tempered by the indications, as offered in Section 4.1, that the very presence of RPOs can alter the power relations of the situation. Whether their presence is powerful enough to alter the outcomes is a question for further research, though the authors have experience with cases where the early intervention of advocates has done so (see, e.g. Rice et al., 2021; Stefánsdóttir et al., 2023). However, the crucial point here is how this lack of knowledge would be even more profound if not for the presence of rights protection officers who act as a critically important counter-balance of support in these cases.
4.3 Systemic Apathy
The finding framed as Systemic apathy runs the risk of appearing overly dramatic or possibly being misunderstood, but this is what emerged from the analysis of the interview data even though the RPOs did not use this term specifically. “Apathy” appears to be a fitting description for some of the findings from the data, as will be discussed. However, we are extending the term apathy slightly in order to avoid the simplistic assumption that child protection workers or judges are uninterested in their work or that they intentionally act in unprofessional ways. Rather this form of apathy, we suggest, can be linked to factors as discussed in the previous section in which “equality” is associated only with gender issues, or the societal-level assumptions about disability or disabled parents result in little interest or energy to think critically about equality work in the disability arena. According to the interview data, some of the RPOs perceived this apathy in the system as rooted in the larger society and culture, a further analysis of which is beyond the scope of this contribution. But for the purposes here, the officers note that these forms of apathy appear to stretch from higher governing systems, such as state ministries, which distribute funding and draft and enact laws and regulations affecting disabled people’s lives, down to managers and then workers in the service systems, such as child protection and social services. The RPOs, when talking about basic requirements on the governmental level, argued that knowing about and understanding the CRPD ought to be a must. Yet a significant amount of work on the part of the officers involves fighting this apathy, such as through attempts at awareness-raising about these issues or simply getting officials to listen. Alex heatedly explained:
Since the Convention was signed in 2007 and ratified in 2016, no one [emphasis added] from the Ministry, no one, [emphasis added] except us, the rights protection officers, and people from NGOs, have attended special seminars about the rights of disabled people and the Convention.
The lack of interest in disability justice often complicated the work of the RPOs and essential time and efforts were spent in the basic education of people in the government about how the Convention needed to be translated into support and services. One RPO, Regn, interpreted this apathy as rooted in the misconception that the issue is merely about service provision:
The trouble with the government is that they don’t know if the Act [38/2018] is service-based or rights-based [. . .] knowledge about the Convention, and how it should be used, implemented and translated into Icelandic laws, is very limited, and we spend time educating about that.
Alex admitted that this becomes tiring, and which introduces a form of apathy into their own work:
When I started, I used to write letters that were like these big reports because I was trying to educate the Parliamentary Ombudsman about the Convention and what it meant, and where they could find supplementary material and such things, but with time I don’t do it as much. Now I just refer to previous writings.
According to the data, the disability apathy noted in the systems described above also appeared to seep into the systems of workers who directly work with those parents and even those whose role is to support the parents. Some of the interviewees described mixed feelings about their work that involved being in a relationship or contact with child protection workers, mostly because of the general lack of understanding of the needs of parents with intellectual disability and their resulting frustrations.
4.4 Challenging the Informal
The last theme speaks to an issue raised by the rights protection officers that another challenge they faced was that the system was too informal in how it operated. The demand that a governmental agency function in a more “bureaucratic” way was not expected by us. The RPOs framed the issue as one of “transparency” and which spoke to their frustrations that the decision-making process by child protection was opaque to both them and the parents, and which made it difficult to critique and challenge. This also extended to a demand by the RPOs to make the process understandable to the parents they supported, such as insisting that accommodations were made to fit the parent’s needs in the form of written documents such as Easy-to-read documents, having all decisions documented, and having no documents signed without proper explanations about the consequences of doing so.
From the point of view of the interviewees, in these kinds of child protection cases the goalposts, in a manner of speaking, often appeared unclear and shifting, and it was uncertain to them how decisions were made, by whom, and when. This was interpreted by some interviewees not as a lack of professionalism, but by design. For example, some of the RPOs speculated that minutes of meetings are often not taken for purposeful reasons; that is to say, properly recorded meeting minutes would reveal a process that child protection may not want to be held up for inspection. The importance of formality came up in the interviews repeatedly. One of the key roles of the RPOs is to ensure that parents with intellectual disability receive fair treatment in the process. Alex described a common issue they face with their clients, including parents with intellectual disability, when asking for appropriate support as stated in the CRPD and Icelandic laws such as 38/2018:
It is very common that people just get a no [emphasis added] when applying for a service, but there is no formal procedure, there is no inquiry that takes place, there is no evaluation that takes place, there is no formal conclusion; this is somehow taken care of verbally with a no, [emphasis added] so we are asking for it to be formal, so there is a least some rationale behind the rejection, not just “there is no money available”.
In safeguarding the parents’ rights, most of the RPOs favoured a formal process in order to get results. And even though their job required them, for the most part, to use formal pathways to achieve their objectives, some said there was a “push” in the system to use informal ways. However, despite sometimes trying the informal method, it usually did not produce results and being formal was considered to be far more successful than an “office chat” with the people working in the system. For the RPOs, formalities were seen as a reassurance that every case had a defined pathway to justice and would not be forgotten about or put in a drawer somewhere.
Being formal, for example, in writing letters secures a certain pathway [. . .] It’s always popular to solve things in a conversation or through a phone call [. . .] but we have found out that it’s more beneficial to have everything formal and direct each case down this formal pathway, even if it takes longer and we are drowning the Ombudsman and social services complaints board in work (Norður).
Some of the RPOs’ reluctance to be informal and instead opting for formality seemed to reflect mistrust towards the service system, especially child protection, as they wanted every meeting and decision noted and written down in case they would need to refer to it later:
Many of our cases are about getting support needs evaluated and putting things in a formal pathway [. . .] It can’t be some chit-chat at the office or a chat with the parents; we want cases put in formal pathways so we can then support the parents if there is a need to send in a formal complaint or a charge (Logn).
One would assume that a certain degree of formality is demanded in child protection work for their working methods and decisions to be trusted, so it was initially a surprise to some RPOs to encounter resistance to formal documentation of the process. Demanding that meeting minutes would be recorded for all meetings, and conclusions and decisions be formalised, was seen as essential to better inform the parents of the process that was being undertaken and what could be expected. Some of the RPOs experienced that the formality they brought with their presence and demands was, in some instances, unpopular and even seen as intimidating by some of the child protection workers who seemed to have difficulties with having their meetings and conclusions written up and available for parents and their rights protection officers to read.
Fortunately, things are changing, but the way it has been is that as soon as we arrive at the meeting, we are the most disliked people in that room [. . .] we always demand that meeting minutes are written up [. . .] child protection thinks that’s uncomfortable because they want to discuss something that they don’t want to be written down. They don’t want to stand by the decisions they are about to make. It’s very different when there is a rights protection officers in the case, then it becomes formal; when the parent is there on their own, people talk differently (Norður).
Based on their experiences, the RPOs argued that to ensure that the parents’ rights are respected the system needs to be as fair and open as possible through a rigorous documentation of the process.
5. Discussion
This contribution has explored the role of Icelandic RPOs for disabled persons primarily focusing on the context of supporting and safeguarding the rights of parents with intellectual disability in their encounters with the child protection system. We have argued that the creation of this office is linked to a paradigm shift ( Degener, 2016) in how disabled people are viewed and treated by the social services as well as the larger society, from being perceived as patients or the objects of charity to equal members of society and rights-bearing individuals who should enjoy the same human rights as others. However, as argued earlier, the ideology contained within the United Nations Convention on the Rights of Persons with Disabilities, and which has influenced domestic Icelandic legislation, needs to transition into practice. One role of the RPOs is to do just that. We have adapted the institutional justice capital framework from Hamilton and Maslen (2022) to analyse the interview data to explore how the RPOs serve as a resource or form of capital for disabled parents who have found themselves the focus of a child protection investigation.
Acting as a form of capital in terms of personal resilience and skills, the RPOs have articulated how they help to educate parents about their rights and entitlements, and help them to navigate a complex, and often hostile, system. They provide knowledge about how the system works, and what to expect, and which is particularly important in the context of marginalised populations who may have limited access to the forms of capital that more powerful and privileged sectors of society can draw upon. As a resource, the RPOs do more than just provide information. As discussed earlier, their mere presence can alter the power relations in the setting of meetings in which the views and voices of the parents are amplified and taken more seriously than would otherwise be the case.
Of equal significance, the work of the rights protection officers is not just directed to the parents, but at the system itself. Alerting power relations means affecting the working methods of the child protection system, such as through demanding formalism in the process in which meetings and decisions are documented and justified to ensure the parents are treated fairly and their rights are respected. The work of the RPOs also seems to extend educating the workers in the system and even members of the judiciary in what disability rights means, as well as more technical concepts such as reasonable accommodation. The interview data also reveals the resistance that RPOs encounter in their work, from workers being displeased at having to document the process in a more extensive way to the general apathy they encounter from child protection workers and judges who are disinterested or unwilling to educate themselves about disability rights, the CRPD, and in specific what appropriate and meaningful supports mean for parents with intellectual disability. It appears from the data that rights protection officers wear many hats, in a manner of speaking than just acting as a support or advocate for these parents.
5.1. Limitations
In this research, the experiences of parents with intellectual disability regarding the work of the RPOs were not sought as the focus of this specific arc of a larger research project was on the experiences of the RPOs. In continuing research, it will be important to investigate the experiences of parents of the support the RPOs provide and whether they consider it to be helpful or not. If such is the case, and some preliminary indications suggest this is so, this can be used to strengthen the argument about the importance of this office and the need to strengthen their role and resources.
6. Conclusion
The themes we have presented here overlap in many ways. There is a notable trickle-down or cascade effect in which prejudicial or stigmatic views of disabled people in general, and parents with intellectual disability in specific, in the larger society influences the upper reaches of government at the policy and funding level, down to the judiciary, to the social services and into the meetings between parents with intellectual disability, child protection and the rights protection officers. The officers have articulated how these views explain some of the systemic apathy they encounter in their work, which in turn plays a role in the lack of knowledge as judges and workers in the system have little interest in acquiring the knowledge they need. Parents with intellectual disability are perceived in the system as incompetent and even harmful parents from the outset, and which influences how cases are treated and evidence is collected and analysed. Judges, as members of the larger society, in turn defer to child protection and the knowledge of their hired experts. Article 8 of the CRPD (Awareness-raising) places a demand upon State Parties to combat stereotypes and prejudice. However, while the RPOs do indeed engage in this kind of work, and which clearly needs to be done, their limited numbers and resources and large caseloads suggest that this role needs to be taken up to a greater extent by the state and municipalities so RPOs can better support the disabled people with whom they work. Supporting parents and their families, educating themselves about disability law and human rights, educating the social services system and the judiciary and in addition to dealing with the resistance they encounter is in sum an unreasonable burden upon the exiting officers unless their numbers and resources are increased.
Further, the theme of resistance on the part of the system needs additional consideration. The RPOs appear to have at times been placed into an adversarial position contra the child protection system. All three authors have experienced similarities in different ways. This needs not to be the case. All parties involved want the same or similar outcomes – strengthened families and happy and safe environments for children. The interview data suggests that the core issue is the divide between those who do not believe that parents with intellectual disability can be suitable parents, and those who believe they can, with the proper support in place. This fundamental divide appears to drive the outcomes of cases in varied ways. A careful consideration of the interview data reveals numerous other issues at work – for example the resistance RPOs encountered to formalising the process. However, if early in the case, it is decided that parents are “unsuitable” based on disability, then it makes sense to resist demands to make the process transparent. Again, we return to the issue of societal-level prejudice which also speaks to the other issues raised by the RPOs, from a lack of interest in knowledge about disability rights, what reasonable accommodations means and demands as well as appropriate and meaningful support, to the judicial deference to child protection and their hired experts, among others. However, to expect the RPOs to continually engage in challenging societal-level views about parents with intellectual disability or disabled people in general is a significant expenditure of time and resources.
The human rights protections contained within the CRPD, and which have undoubtedly influenced legislation in different ways within its member states, are simply not enough. We argue for the importance of specialised rights protection mechanisms for disabled people as an accessible part of the justice system. Parents with intellectual disability are at a particular risk for unjust processes once involved in the child protection system, and therefore it should be a standardised practice to make the support of rights protection officers available as soon as involvement is initiated.
Gerard Quinn (2009, 256) has claimed that the CRPD has the potential to be used as a powerful tool to persuade and socialise states to “transform the political process to the point that justice and rights for persons with disabilities is seen as the primary departure point and not as an annoying distraction”. Though we are not there yet, rights protection officers are important actors in changing how the government and institutions think about and respond to disabled people and their rights. The RPOs are, in a sense, activists and collectively act as change agents in the interplay between the disabled people they support and the service system in which they engage. The Office of Rights Protection gives them an additional layer of influence within the system for acting upon violations of the rights of disabled people. It is vital that such mechanism functions as an independent agency and is supported on the governmental level to ensure that the rights of disabled people will eventually be seen as a primary departure point in the process.