Children with Intellectual and Developmental Disabilities in Out-of-Home Care: A Scoping Review

Shannon, Jaylene; Wilson, Nathan J.; Blythe, Stacy

doi:https://doi.org/10.1155/2023/2422367

Health & Social Care in the Community

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Abstract Introduction Discussion Conclusion Additional Points Conflicts of Interest Acknowledgments References Copyright Related Articles

Review Article | Open Access

Volume 2023 | Article ID 2422367 | https://doi.org/10.1155/2023/2422367

Children with Intellectual and Developmental Disabilities in Out-of-Home Care: A Scoping Review

Jaylene Shannon,¹Nathan J. Wilson,¹and Stacy Blythe^1,2

Academic Editor: Gianpiero Greco

Received26 Nov 2022

Revised22 Feb 2023

Accepted06 Mar 2023

Published14 Mar 2023

Abstract

Children with intellectual and developmental disabilities are often over-represented in child protection and out-of-home care services. Despite this fact, little is known or understood about their experiences with these services. This scoping review seeks to identify the published literature about children with intellectual and developmental disabilities who are engaged with child protection and out-of-home care services. Findings from the 18 studies included in this review show that these children are at increased risk of entering the child protection and out-of-home care system, with outcomes that do not fare as favourably as their nondisabled peers. This is largely due to a lack of support, training, and resources for the children, their families, and carers. Placement failure was a common theme with residential care more likely for children with greater complexity and support needs. These children are understudied, with more research needed to better understand the factors that contribute to their experiences. Greater insights into how a child protection and out-of-home care pathway can be avoided, via the provision of adequate services and supports, are also urgently needed so that fewer children are placed at risk in a system where poor outcomes are common.

1. Introduction

In 2018, 7.6% of children aged 0–14 in Australia had some level of disability, with intellectual and developmental disabilities being the most common (4.5%) [1]. Intellectual disability is defined as having significant limitations in both intellectual functioning and adaptive behaviour before the age of 18 [2]. Intellectual functioning is typically determined by both IQ and adaptive behaviour tests, with the latter a broad concept covering conceptual (e.g., time, self-direction, managing money), social (e.g., interpersonal and communication skills, self-esteem, and ability to understand and follow social rules), and practical (e.g., activities of daily living) skills that enable the person to function in their community. People with intellectual disabilities have greater mortality and morbidity compared to the general population [3] with noted health system pathway barriers and limited understanding and application of reasonable adjustments from within the health system [4, 5]. Developmental disabilities include cerebral palsy, autism, and other developmental disorders that often co-occur with intellectual disability. Children with intellectual and developmental disabilities (IDD) are a particularly vulnerable population with greater caregiving needs and an increased risk of experiencing maltreatment [6]. It is, therefore, not surprising that many children with IDD are reported to have increased engagement with child protection (CP) services and often require placement into out-of-home care (OOHC) [7]. Out-of-home care can be defined as overnight care for children under 18 years of age, provided by authorized carers who are vetted, receive ongoing case management, and are offered financial recompense for the children’s expenses [8].

Although specific elements of CP and OOHC services vary between jurisdictions, in most Western countries, these exist to ensure the safety, health, and wellbeing of children who are unable to live with their parents. This is largely based on the United Nations Convention on the Rights of the Child, which emphasizes children’s right to an environment conducive to their physical, mental, spiritual, moral, and social development [9]. Decades of research have demonstrated that children fare better in home-based (e.g., foster or kinship care) rather than institution-based OOHC [10]. As such, in Australia (like in many other Western countries), the majority of children requiring OOHC reside in home-based care, with 36% living in foster care, and 54% living in kinship care [8, 11].

On June 30^th, 2021, there were 46,200 children residing in OOHC in Australia. The disability status of only 63% (∼29,100) of these children was reported. Of these, approximately 30% (>8,730) were reported to have some type of disability [8, 11]. This is more than four times the incidence of children in the general population of Australia. It should be noted there is a disproportionate number of Indigenous children (19,500) in OOHC in Australia [11], and the disability status of these children is not publicly available.

It is well known that children living in OOHC have increased incidence of physical, mental, cognitive, social, emotional, and psychological issues compared to their peers in the general population [12]. Despite this, their disability status is not routinely reported, and there is a dearth of literature specifically addressing the issues related to children with IDD who require OOHC or those of their caregivers. This signifies a significant gap in knowledge of how best to support children with IDD living in OOHC and their carers.

1.1. Aims

The aim of this review was to collate current literature regarding children with IDD requiring child protection and/or out-of-home care services in order to identify gaps in the evidence and map a future program of research.

Research question: What is known about children with IDD engaged with CP and OOHC services?

2. Method

Scoping review methodology was utilised as it provides a framework for searching, assessing, and summarising the available research on a particular area, and identifying the extent of research evidence [13]. Rather than being guided by a focused research question, a scoping review uses a broad exploration of literature to identify all relevant literature regardless of study design (Arksey and O’Malley, 2005). The method adopted for conducting this scoping review was based on Arksey and O’Malley’s [14] framework.

2.1. Search Strategy

Databases searched included CINAHL, Medline, ProQuest, PsychInfo, SCOPUS, and PubMed. A preliminary search was conducted in each database to gain familiarity, aid in identifying key terms, and establishing search parameters. Search terms reflected the key concept areas related to the research questions: “Intellectual disability” or “developmental disability” and “out-of-home care” or “child protection.” See Table 1 for a full list of search terms. Electronic search results were exported into Mendeley, and duplicates were merged. The inclusion and exclusion criteria are outlined in Table 2. The search was limited to studies published in English and within the date range of January 2010 to May 2021.

2.2. Selection Process

Studies were selected in two stages: (a) through title and abstract review and (b) full-article screening, as identified in a Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) flow diagram (Figure 1). Title and abstract reviewing were conducted by the first author (JS), and full texts were reviewed by the first (JS) and third (SB) authors, with an independent review by the second author (NW) to resolve conflicts.

2.3. Data Collation

Data determined relevant to the aims of the review were extracted and organised into table format using a Microsoft Word document. Data were extracted and summarised within a data summary table in Microsoft Word. Each article was then reread line-by-line and summarised in a word document, and personal thoughts and reflection on the article were also written by the first author (JS), then reviewed, and confirmed by the third author (SB). All authors then met to discuss results and determine the presentation of findings into topic categories and potential discussion points.

3. Findings

After removing duplicates, the initial search generated 2,195 articles. There were 1998 articles removed after the screening of titles and abstracts. Full-text review was sought for 197 articles and four texts were unavailable for retrieval, so, therefore, excluded. A further n = 167 articles were excluded due to the term “disability” being used to aggregate samples of children with any form of disability (n = 44), the ambiguity regarding children’s specific disabilities (n = 8), the article not relating to CP or OOHC (n = 12), the disability not being intellectual (n = 88), the children had no disabilities (n = 16), the text was not a journal article or study (n = 5), or the sample included adults with IDD (n = 2). Eighteen articles were subsequently included in the final review (see Figure 1).

Seven articles were from the United States of America (USA), three from the United Kingdom (UK), four from the Netherlands, two from Canada, and one each from Spain, Israel, and India. Five of the included publications focused specifically on children with IDD in residential care, three on children with IDD in foster care, three reported on the prevalence of IDD in different OOHC settings and reasons for children’s removal from parents, three focused on maltreatment of children with IDD, two focused specifically on sexual abuse of children with IDD in OOHC, one focused on parents decisions to voluntarily place children in OOHC, and one case study explored the psychotherapy sessions of a young boy with IDD on his journey across many different OOHC settings. Table 3 presents an overview of the findings, which are discussed in detail below.

3.1. Journey into Care

The literature highlights those children with IDD are at increased risk for entering OOHC. A national comparative study in Ireland conducted by McConkey et al. [21] found children with intellectual disabilities were 12 times more likely to be in care compared to children without disabilities. Likewise, a longitudinal study of children receiving special education services in USA schools, found that children with IDD had elevated risks of multisectoral systems involvement, including child welfare, juvenile justice, and mental health systems [25].

3.2. Maltreatment

Children with IDD are overrepresented among substantiated maltreatment cases. A Canadian study by Dion et al. [27] reported prevalence rates of substantiated maltreatment cases to be 10% of children with IDD compared to just 1% of children without IDD. High incidence rates were also found in a USA population-based cohort study by Van Horne et al. [29], who reported that children with Down syndrome were 32% more likely to be maltreated compared to their peers without a genetic syndrome. McDonnell et al. [31] found that children with IDD were more likely to experience severe forms of maltreatment, from multiple perpetrators, including their caregivers.

Slayter and Springer [19] found the prevalence rates for the different types of maltreatment that lead to placement into OOHC differed, with children with IDD experiencing an increased incidence of neglect compared to other children. McConkey et al. [21] also found children with IDD in the UK are more likely to experience neglect as a reason for removal.

In Slayter and Springer’s [19] study, children with IDD were less likely to be removed due to parental drug abuse or child drug abuse compared to the comparison group. They also reported that females with IDD were twice as likely to be removed due to sexual abuse, compared to those without IDD. Although both males and females with IDD were found to experience the same rates of physical abuse, males with IDD were 15% more likely to be removed from parental care due to physical abuse compared to boys in the comparison group.

3.3. Voluntary Placement

Children with IDD often have additional complexities, such as multiple chronicity, and require an increased level of care [21]. Subsequently, they are also more likely to be voluntarily placed into OOHC settings compared to nondisabled children [19, 21]. A survey exploration of parental decision-making found 1 in 6 parents of children with IDD had considered placing their child in OOHC, and 1 in 10 were actively pursuing OOHC placement due to the increased care needs, lack of resources to provide care, and pervasive impact on the entire family [23].

A qualitative study by Brown et al. [18] used interviews to explore families’ perspectives on life prior to choosing to place their child with IDD into a residential care facility. The parents described life with the child prior to placement as being extremely difficult, mostly due to challenging behaviours of the children. Experiences included impacts and restrictions to parental employment/work, having visitors to the house and choosing outings, impacts to siblings, difficulties accessing respite, and challenging behaviours and discontent in the child.

3.4. Placement Settings in OOHC: Home-Based Care Vs. Residential Care

Like maltreatment types, the patterns of OOHC settings differ for children with IDD compared to other children. Given children with IDD are at much higher risk for maltreatment and voluntary relinquishment from parents, it is not surprising that a retrospective cohort study, conducted in the USA by Cidav et al. [28], found that children with IDD enter foster care at higher prevalence rates compared to the general population of children. The reported rates of entry into foster care for children with IDD were 5.7% compared to 2.6% for typically developing children.

Generally, following their placement into OOHC, the goal of child protective services is to support families to create a safe environment for the child to return to their care. However, Slayter [7] found that children with IDD are more likely to remain in foster care and are less likely to return to their primary caregivers or be placed with kinship carers, compared to other children in foster care. Slayter [7] also found that children with IDD are more likely to experience a failed adoption compared to other children, with 6.7% of children with IDD having had a previous failed adoption, compared to just 1.9% of children without a disability.

Slayter and Springer’s [19] cross-sectional, exploratory study conducted in the USA found that 2.6% of children in the foster care population were children with IDD. In terms of characteristics, children with IDD were on average, two years older (average age of 11), more likely to be male, and were between 4 and 20 times more likely to have a comorbid disability or medical condition, compared to the comparison group. Children with IDD had only a very slightly higher number of lifetime removals and were only slightly older at the age of first removal compared to the comparison group. Children with IDD were also more likely to have had a previous adoption.

Children with IDD are more likely to be placed in institutional or residential care settings. Slayter and Springer [19] found children with IDD requiring OOHC in the USA were twice as likely to be placed into an institutional setting compared to a comparison group of children without a disability.

A longitudinal study conducted in Israel identified a downward trend in the percentage of children with IDD living in residential facilities between the periods 1999 (18.07%) and 2007 (12.6%) [19]. The authors proposed that this decrease was likely related to policy shifts toward deinstitutionalization and not related to increased support for families. The authors argued that in the Israeli context, residential care was often the better option for children with IDD due to their increased needs which necessitated nursing care and various medical and mental health supports, which could not be provided in the home, due to the lack of public health support for families with a child with IDD [19].

A mixed-methods study of 99 Dutch children with IDD in long-term foster placements reported that 28.3% experienced early termination of their placement [18]. The study identified a correlation between the severity of troublesome behaviours of children with IDD and the experience of multiple placements. A comparative study by McConkey et al. [21] found the type of placement was dependent on the child’s level of disability. Specifically, they found children with mild disabilities were more likely to be in foster care settings, whereas children with more severe disabilities were more likely to be in congregate care arrangements.

When comparing children with IDD living in residential care to their nondisabled counterparts, Sainero et al. [20] found that the care needs of children with IDD were greater. More than 25% of the children with IDD presented with major physical illnesses compared to only 7.4% of children without a disability in the study sample. Overall, children with IDD had higher care needs due to additional physical and mental comorbidities and behavioural needs. Children with IDD were more likely to have experienced severe maltreatment and previous placement instability prior to their placement into residential care.

Enhanced care support is also reported for adolescent females with IDD in residential care. In a study of menstrual patterns in adolescent females with disabilities living in a residential facility (n = 15), females with mild intellectual disabilities were found to be independent with menstrual hygiene. However, females with moderate IDD required supervision, and those with severe IDD were fully dependent on assistance from others to manage their menstrual hygiene [22]. Behavioural problems in females with IDD were reported to peak during the premenstrual phase of their cycles. The authors suggested dysmenorrhea may be under-reported in adolescent females with IDD and may contribute to the reported increase in behavioural issues [22].

The comorbidities of children with IDD, which often necessitate higher care requirements, may also result in premature death. Using a multivariate regression analysis (2018) found that the odds of children with IDD in residential care enrolling in hospice care were three times higher than their counterparts in their last year of life.

3.5. Sexual Abuse in OOHC

Two studies on the sexual abuse of children with IDD in OOHC settings were found in the review of the literature [24, 26]. One study conducted in the Netherlands reported children with mild IDD to be at increased risk for sexual abuse in OOHC settings compared to children without IDD. The overall year prevalence estimates of sexual abuse for children living in OOHC with IDD were significantly higher (9.7 per 1000) when compared to children without IDD (3.5 per 1000) [24].

Euser et al. [24] reported the overall risk rating for children with IDD to be similar whether residing in residential care (9.9 per 1000) or foster care (9.3 per 1000). Conversely, Wissink et al. [26] found children with and without a disability had an increased risk of sexual abuse in residential care compared to other OOHC settings. However, children with IDD in OOHC settings that were not residential care were seven times more likely to be the victim of sexual abuse compared to children without IDD in OOHC settings that were not residential care [26].

4. Discussion

The aim of this study was to summarise what is known about children with IDD who engage with CP and OOHC services. The small sample of articles included in this review suggests that children with IDD engaging with CP and OOHC services are an understudied population despite the finding that the prevalence of children with IDD engaged with CP and OOHC services exceeds that of the general population. This review highlights the journey into and through OOHC differs for children with IDD, with their disability directly impacting their entry to care, placement stability, the context of care, and the likelihood of experiencing further maltreatment.

It is clear from the literature that children with IDD have increased care needs which are often further compounded by additional complexities, such as challenging behaviour and multiple chronicity, causing increased levels of stress for parents [32], a known risk for child maltreatment [33]. When families are well supported, parental stress can be moderated, thereby reducing the risk of child maltreatment. Unfortunately, this review suggests when families are not well-supported, children with IDD are either removed from parental care for their own safety or voluntarily placed into OOHC by their overwhelmed parents. While the former is a common reason for placement into OOHC, the latter is less so.

Voluntary placement into OOHC is not well understood or universally available but appears to be more common for children with disabilities. In a comparative review of state statutes in the USA, Jones et al. [34] found a lack of clarity and consistency related to voluntary OOHC placement. An exploratory study by Hill [35] found 3.4% (21,966) of the children in OOHC in the USA in 2013 were voluntarily relinquished by their parents. Of these, 41.1% had a disability diagnosis. Hill [35] also reported that children who are voluntarily placed into OOHC experience higher numbers of placements, spend longer overall time in OOHC, and are more likely to be placed into congregate care settings compared to children who are not voluntarily relinquished to OOHC.

Irrespective of their entry pathway, compared to their nondisabled peers, the OOHC experience of children with IDD differs. Whilst in care, they are more likely to experience multiple foster carers and less likely to be placed in kinship care. This is likely due to the difficulties which foster carers’ experience trying to meet the increased needs, in particular increased healthcare needs of children with IDD. Not unlike the biological parents, foster carers have been found to experience financial, social, and healthcare system-related challenges when providing care to children with IDD [36]. Whether foster carers of children with IDD are consistently provided with additional supports or training to assist them in their caregiving role is largely unknown, but not likely given the plethora of literature indicating foster carers are poorly supported in their caregiving role (e.g., [37–40]).

Previous research has identified that carers do not receive adequate training for the children in their care. For example, a recent Australian study found foster carers of infants were provided no training related to basic infant care such as feeding, sleeping, settling, vaccination schedules, or developmental outcomes [41]. A mixed-methods study in New Zealand identified a “mismatch” between the level of support and training offered to foster carers and the burden of care related to the children’s complex needs [39]. Carers in this study expressed an urgent need for training regarding the etiology of children’s challenging behaviours and practical skills for effective behaviour management. Foster carers’ requests for training and support related to behaviour management have been consistently reported in the literature for at least half a century (e.g. [40, 42–47]), indicating such training has either not been provided or is not effective. In this context, given that some children with IDD are known to manifest complex and challenging behaviours [48], it is not surprising that foster carers struggle to provide care for children with IDD.

Children’s complex care needs coupled with poorly supported foster carers result in multiple foster care placements and eventual placement into residential care facilities, where they are at greater risk of further physical and/or sexual maltreatment compared to children without disabilities [24, 26]. Further, while residential care settings may be better equipped to cater to the specific physical care needs of children with IDD, such as complex health supports, they can reduce the likelihood of children forming healthy attachment relationships. Attachment theory purports the quality of children’s attachment with their primary caregiver plays a pivotal role in their social and emotional development [49, 50]. Institutional care is known to inhibit attachment; this understanding likely underpins the reported decrease in the institutionalization of children with IDD in Israel [19]. Nevertheless, without services to support either biological parents or foster carers in the community, children with IDD will continue to be at an increased risk of placement into residential care facilities and subsequent maltreatment. This suggests the need for a well-integrated multisystem approach to support children with IDD and their families (biological and/or foster) to enable them to reside in a home with individuals who can provide both the physical and emotional care they need.

Biological parents relinquish care for multiple reasons, including a lack of support and resources to provide adequate care for children with IDD in their homes or a lack of funds to secure quality residential care [23]. This review suggests that foster carers also relinquish care, as many children with IDD experience multiple foster carer placements prior to residing in residential care. If this pattern is consistent, it is possible that their initial placement into foster care is merely delaying the inevitable placement into residential care. Tenebaum et al. [19] argued that residential care is the preferable form of OOHC for children with disabilities, due to the lack of support available in the community. This perspective is not without controversy, for a range of reasons. The question that arises, however, is whether the risk of multiple foster care placements and broken attachments outweighs the benefits that come from residential care despite the limited opportunities to form attachments to a primary carer. Surely, the answer is to better support families in the first instance, thereby reducing the incidence of placement, voluntary or not, into the OOHC system.

When a child is diagnosed with IDD, parents’ responses can be quite varied [51]. For some, diagnosis may bring affirmation or relief, while others experience grief and must deal with the loss of the dreams and ambitions they held for their child. Conversely, many foster carers are made aware of children’s diagnoses prior to their placement into care. As such, these carers make a conscious decision to provide care for children with IDD. However, this review suggests carers are not always able to make informed decisions as the information provided to carers does not accurately reflects children’s needs [18]. When this occurs, carers may find themselves unable to provide the care required. This has negative implications for both the children (as previously discussed) and the carers. Research has previously demonstrated the termination of a placement, planned or unplanned, has a significant emotional impact on carers [52, 53], often contributing to foster carer attrition [54].

Not only should foster carers be provided adequate information to make informed decisions regarding their capacity to provide care to children with IDD but also that they should be supported to provide optimal care. Of note is that this review found no literature indicating foster carers of children with IDD were routinely provided training related to the children’s care. It should be noted that in the USA, however, a small minority of children with complex needs are placed into medical foster care, with carers who receive a higher level of financial compensation and support. Unfortunately, these specialized medical foster carers have also reported feeling inadequately prepared to provide care for children with medical complexity [55], as they often receive fragmented and inaccurate information regarding the children’s needs [56]. Statistics regarding how many of these children are diagnosed with IDD are not known. What is clear is that the supports (or not) currently in place for carers of children with IDD in out-of-home care are greatly lacking. Urgent attention is needed to reduce potential foster carer attrition and increase the likelihood that children achieve optimal physical and emotional outcomes.

It is important to highlight that most articles included in this review came from the USA, UK, and the Netherlands with a small number from Canada, Spain, Israel, and India. As such, conclusions drawn from this review may have limited transferability to different cultural contexts. None of the articles came from Australia, demonstrating a major gap in the Australian literature for children with IDD in OOHC.

5. Conclusion

This review is the first to focus on the published literature related to children with IDD who are engaged with CP and OOHC services. Of note is the overwhelming quantum of data that reports added problems for these children at every stage of the CP and OOHC journey. The most significant finding is the reported lack of adequate support, training, and resources for the child with IDD, their families, and their carers in the OOHC system. Future research needs to identify those children with IDD who are either not let down by the system or who thrive within the system to better understand the factors that are required to improve outcomes. The added complexity of many children with IDD, whether from challenging behaviours or multiple chronicity, is an area that perhaps requires specialized input that is both targeted and timely from appropriately trained health professionals.

Additional Points

The following is known about this topic: (i) children with intellectual and developmental disabilities have increased caregiving needs and are at greater risk of neglect and abuse or voluntary placement into out-of-home care. (ii) As a result, there is a disproportionate number of children with intellectual and developmental disabilities engaging with child protection and out-of-home care services. This paper adds the following: (i) children with intellectual and developmental disabilities who engage with child protection and out-of-home care services are an understudied population. (ii) Their journey into and through care differs from their nondisabled peers, characterized by increased placement instability while in foster care and increased likelihood of placement in residential care facilities. (iii) There is little known about what training or supports are provided to foster carers regarding the care of children with intellectual and developmental disabilities.

Conflicts of Interest

The authors declare that they have no conflicts of interest.

Acknowledgments

Open access publishing facilitated by Western Sydney University, as part of the Wiley-Western Sydney University agreement via the Council of Australian University Librarians.

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Copyright © 2023 Jaylene Shannon et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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