|
| Authors, country | Design | Objective | Population | Key findings | Reported limitations |
|
| Strijker and Van De Loo [18], Netherlands | Retrospective longitudinal study | Explore what the risk factors were for placement breakdown specific to children with intellectual disability, and the prevalence of placement breakdown for children with intellectual disability | Children with intellectual disability living in long-term foster care who began a new foster care placement within the study year. The sample included 99 children, with 60% of children were living in nonrelative foster families | For children living in Kinship care, 41.5% had not been placed in foster care before. For children living in family foster care, 44.8% had experienced at least 2 placements prior. Kinship carers underestimated the difficulty of the placement prior to accepting care of the child and this being a contributing factor to placement breakdown (61.5% of kinship carers vs. 38.5% of family foster carers). The probability of placement breakdown moderately correlated to the severity of the child’s problem behavior during placement, as well as before entry into the current family. There was also a strong correlation to placement breakdown with the child’s age, and a moderate correlation to placement breakdown to the child’s placement type of kinship care | Small sample size |
| Slayter and Springer [19], USA | Cross-sectional, exploratory study | To explore reasons for child welfare system involvement and the types of out-of-home placements used for children with intellectual disabilities. Two variables were measured – demographics and foster care characteristics demographics measured included: age, gender, race, and Hispanic/Latino/a ethnicity. As well as other comorbid disabilities and other medical conditions. Foster care characteristics included history of child protection services involvement (number of removal episodes, years since first and current removal episode, and age at removal), and placement settings. Also, reasons for the current removal episode were assessed, as well as years since termination of parental rights, history of any previous adoptions, and age at that adoption | A sample of 17,714 children with intellectual disability was compared to a sample of 655,536 children without intellectual disability | 2.6% of children in the foster care population were children with intellectual disability. Children with intellectual disability were on average, 2 years older (average age of 11) and more likely to be male. Children with intellectual disability were between 4 and 20 times more likely to have a comorbid disability or medical condition, compared to the comparison group. Children with intellectual disability were more likely to have had a previous adoption. Children with intellectual disability were more likely to be placed with child protective services voluntarily, compared to children without intellectual disability. Children with intellectual disability were also more likely to have court-ordered removals. Neglect was the most common reason for removal for both groups, however children with intellectual disability had a greater percentage of removal for neglect compared with the comparison group. Reasons for removal of children with intellectual disability was also more likely due to relinquishment, parental death, their disability, sexual abuse, or physical abuse – compared to the comparison group. Girls with intellectual disability were twice as likely to be removed due to sexual abuse, compared to girls without intellectual disability. Although both girls and boys with intellectual disability experienced the same rates of physical abuse, boys with intellectual disability were 15% more likely to be removed due to reasons of physical abuse compared to boys in the comparison group. Children with intellectual disability were twice as likely to be placed into an institutional setting compared to the comparison group. Children in the comparison group were more likely to be living in kinship care settings, or at home in a family trial, compared to children with intellectual disability. Children with intellectual disability experienced a greater number of placement settings compared to the comparison group | Not stated |
|
| Russell, [17], UK | Single case study | To contribute to a growing understanding of the potential of psychoanalytic psychotherapy as an intervention for children and young people with severe learning disabilities | A boy with foetal alcohol spectrum disorder (FASD) in the UK in OOHC. Written from the perspective of his psychologist | The psychologist saw progress with the boy in his understanding of his own internal feelings but was also unsure if the therapy helped or hindered, as prior to therapy the boy was in a state of ignorant bliss to cope with trauma, and the process of confronting trauma was challenging for the boy | Not stated |
| Brown et al. [18], UK | Qualitative | To explore the perceptions of family life for parents prior to child’s admission to residential school/care and after admission to the school/care facility. To explore parents’ perceptions of child behaviour prior to admission and after admission | In the sample of 23 children, there were a substantial number (17 of the 23) diagnosed as having an intellectual disability. There were 16 children with autism spectrum disorder, two of whom had Asperger syndrome. Three children had Down syndrome, two of whom also had a diagnosis of autism spectrum disorder. Three children had diagnosed psychiatric disorders, including obsessive compulsive disorder (OCD). There were single cases, each of attention-deficit hyperactivity disorder (ADHD), CHARGE syndrome, fragile X, foetal alcohol syndrome, Pallister–Killian syndrome and Rett syndrome. Most of the children in the study were in full-time residential care at Camphill school Aberdeen and received active, full-time day programmes. Altogether 19 parents (17 families) were involved in the 1 : 1 interview. In two cases, both parents were interviewed. There were 12 mothers and seven fathers. The above included one foster and one adoptive mother. Seven other parents participated in the focus group. The parents represented six children and five families. Two sets of mothers and fathers were present. One family had two children with major disabilities attending the residential school/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. Parents saw improvements in child’s behaviours, including their social interactions and their independence. They also saw an improvement in their health: Sleeping and eating better. When children returned home for visits, parents described experiencing enjoyment when their child with disability visited, and improved quality time eased feelings of guilt associated with placement | It was recognised that the study was primarily directed to the potential effects of major changes to the facilities with the planning of a major roadway close to the school/care facility’s group homes and other facilities |
| Tenenbaum et al. [19], Israel | Use of a questionnaire developed by the office of the medical director, Ministry of Social Affairs and Social Services | To examine trends in the number of children with intellectual disability in residential care centers in Israel | 6,872 persons with intellectual disability in residential centers in 2007 | The percentage of residents that were children (aged under 19 years) has been trending down since 1999, from 18.07% to 12.6% in 2007 | Not stated |
| Sainero et al. [20] Spain | Descriptive study used questionnaires completed by child’s key residential worker | To profile the state of health and wellbeing of a group of children with intellectual disability living in a residential care facility in Spain and compare these results to their nondisabled counterparts | A sample of 264 children aged between 6 and 18 years living in a residential care facility in Spain were used as the sample for this study. Forty-eight individuals in this sample had intellectual disability | The study found that the children in the sample who had intellectual disability were more likely to have experienced physical abuse and multiple forms of abuse compared to children without a disability. Children with intellectual disability had also experienced more placement instability prior to their placement in the residential care facility. More than a quarter of the children with intellectual disability presented with major physical illnesses compared to only 7.4% of children without a disability in the studies sample. There was significant difference in the utilization of mental health services between the two groups, with a little more than a quarter of the entire sample receiving mental health treatment, 45.8% of the children with intellectual disability were receiving treatment compared to just 21.3% of the children without a disability. Similarly, the use of psychotropic medication was disproportionately prescribed, with 86.4% of the children receiving mental health treatment with intellectual disability taking them compared to just 50% of the children without a disability receiving mental health treatment. Children with intellectual disability had higher scores for clinical range of all mental disorders; however, they were only statistically significantly higher for social problems and total behavior problems compared to the children without a disability | Exploratory and descriptive study conducted in a single autonomous community of Spain that may not represent the generality of cases in the country. The number of children meeting the criterion for diagnosis of intellectual disability was relatively small. The potential sample of children with disability in residential homes might be even higher than that recognised here |
|
| McConkey et al. [21] UK | Comparative study | To monitor the living arrangements of children with intellectual disability from the Republic of Ireland over a ten-year period | 700 children with intellectual disability living in out-of-home care settings. Data came from the national intellectual disability database. Children’s placements between 1999 and 2009 were monitored | Children with intellectual disability were 12 times more likely to be in care compared to children without disability. Male children without disability were only slightly more prevalent than female children without disability (50.6% compared to 49.4%), whereas male children with intellectual disability were more prevalent in care compared to female children with intellectual disability (64.8% compared to 35.2%). Children without disability had only a slight difference in percentages between the 2 age ranges of 0–9 years, and 10–19 years, with 54.2% of the population in the 10–19 years age group compared with 45.8% of children aged 0–9 years. However, children with intellectual disability in the 10–19 years aged group had a significantly higher proportion of children in care compared with children with intellectual disability in the 0–9 years aged group (83.7% compared 16.3%). Most children without disability were in foster or boarded out settings, whereas most children with intellectual disability were in residential settings | The National Database in the Republic of Ireland contains no information regarding the reasons as to why children were placed in care. No details were available on the children’s behaviour or health needs which might influence their care arrangements. It is possible, that children experienced different placements over the ten-year period within the same form of care arrangements that would not have been reflected in the analysis, as only two time points were selected for comparison |
| Joshi and Joshi [22] India | Descriptive study | To describe the menstrual pattern of girls with disabilities | 30 adolescent girls with disabilities living in a residential home. Disabilities included intellectual disability (21), locomotor disability (3), visual impairment (1), hearing impairment (2), and multiple disabilities (3) | Of the 30 girls, 15 had started menstruating. Seven girls with intellectual disability had attained menarche beyond 14 years of age, and 2 girls with intellectual disability had not yet attained menarche by the age of 15 years. Disobedience in girls with intellectual disability peaked in the premenstrual phase of their cycles. Girls with mild intellectual disability were independent with menstrual hygiene, girls with moderate intellectual disability required supervision, and girls with severe intellectual disability were fully dependent. The authors claim that the study demonstrates that girls with moderate intellectual disability could become independent with menstrual hygiene with the right education. However, some behavioral modifications and psychotherapeutic drugs may be needed to promote this. Dysmenorrhea may be under reported in girls with intellectual disability | Sample size is limited. Dysmenorrhea could have been underreported due to communication skills of participants |
| McConnell et al. [23] Canada | Multimethod study spanning across 3 years using annual surveys and in-depth interviews – this article presents the surveys for the first year | To identify factors that may explain why some families, and not others, seriously consider out-of- home placement as an option for their child | 538 families raising children with disabilities in Alberta, Canada disabilities of children included intellectual disability (48%), autism spectrum disorder (36%), cerebral palsy (15%), Down syndrome (11%) | The findings of this study suggest that if parents shared responsibilities for keeping the family running, had sufficient services that meet the needs of the family, with flexible working conditions, and satisfactory childcare options, the sustainability of the family was achievable despite child characteristics (e.g., activity limitations, complex behaviour, and healthcare needs) | Generalizability may be limited to only families within the same state of the study population. Relies on parent carer view and other family members may have other views |
| Euser et al. [24] The Netherlands | Used a questionnaire | To examine the year 2010 prevalence of child sexual abuse in Dutch residential and foster care for children with a mild intellectual disability | A sample of 104 professionals from 18 different facilities was used. Each professional reported on a different group of children with intellectual disability for which they supported care of during the study period. There were 1650 children overall in out-of-home care. There were 955 children in residential care, and 695 children in foster care in the study period | In total, 16 cases of sexual abuse were reported, creating an overall year prevalence estimate of 9.7 per 1000. This was significantly higher compared to the study of children without intellectual disability in the same study period residing in out-of-home care, whose prevalence risk was 3.5 per 1000. The sexual abuse risk prevalence of children with a mild intellectual disability residing in residential care was initially higher compared to children with a mild intellectual disability in foster care settings. However, children residing in foster care were significantly younger (31% of children in foster care were over 12, compared to 84% of children in residential care). To prevent an age effect on the prevalence risk, these risk scores were recalculated for estimates of risk prevalence in children aged over 12. This resulted in an overall risk rating for children in residential care with intellectual disability to be 9.9 per 1000, compared with children in foster care at 9.3 per 1000 | Sentinel reports to assess sexual abuse were used. Meta-analytic evidence indicates that prevalence rates of sexual abuse based on self-report are considerably higher than prevalence rates based on sentinel studies |
| Slayter [7] USA | Cross-sectional, exploratory study | Establish the prevalence of disrupted adoptions of children with intellectual disability in foster care; establish the demographic differences of foster children with intellectual disability who discharge from foster care compared to those who remain; explore case outcomes for foster children with and without intellectual disability; and explore case outcomes of foster children with and without intellectual disability who are ageing/transitioning out of foster care | Taken from data from the adoption and foster care analysis and reporting system (AFCARS) – sample included 11,420 children with intellectual disability and 359,353 children without intellectual disability or any other disability | Children with intellectual disability constituted 3.2% of the foster care population for which a confirmed disability diagnosis was recorded. The data found that 6.7% of children with intellectual disability had had a previous failed adoption, compared to just 1.9% of children without a disability. Foster children with intellectual disability were 46% less likely to exit foster care compared to their nondisabled counterparts. Foster children with intellectual disability were 48% less likely to experience reunification with their family compared to their nondisabled counterparts. Foster care children at transitional age (18+) with intellectual disability were 28% less likely to exit foster care compared to their nondisabled counterparts | The definition of “mental retardation” used by the adoption and foster care analysis and reporting system (AFCARS) is limited in that it does not allow for specification of findings by level of intellectual disability. This measure may also include diagnoses other than intellectual disability. Prevalence data derived from the use of this variable are likely to be an undercount of the actual prevalence of intellectual disability, as child welfare case workers who enter data about their clients might not enter this diagnostic condition for all their clients |
| Chen et al. [25] USA | Longitudinal study | To examine the prevalent types, varying degrees, and predictive patterns of multisector involvement in out-of-home settings for students with disabilities in different special education classifications | This study examined a sample of early adolescents in grades 7, 8, and 9 receiving special education in a large urban school district. Out of 58,000 youth, 10,911 (18.8%) were enrolled in special education programs (7, 028 with learning disabilities, 1,247 with serious emotional disturbance, 1245 with intellectual disability, 804 with speech and language impairments, and 587 with other disabilities) | For students with disabilities receiving special education services, nearly 10% were involved in at least one form of out-of-home care system (either child welfare, juvenile justice, or mental health), and more than 3% were involved across 2 or more systems. Students with serious emotional disturbance were most at risk with 21.2% of students involved in at least 1 system of out-of-home placement. Of the students with learning disabilities, 9.1% had at least one system involvement, and 3% had more than one system involvement. For children with intellectual disability, 6.8% had one system involvement, and 1.5% had more than one system involvement. Less than 3% of students with speech and language, and other disabilities were involved in at least one system and nearly 1% experienced more than one system involvement. Looking specifically at the children with intellectual disability, 8.2% had any amount of system involvement. Of those children with intellectual disability involved in out-of-home care systems (n = 102), 47.1% were involved in child welfare, 49% were involved in juvenile justice, and 23.5% were involved in mental health | The study sample, though sufficient in size, is from an urban school district that disproportionately serves minority, low-income students in the northeast. The findings for multisector involvement for students with disabilities are limited to out-of-home placements |
| Wissink et al. [26] Netherlands | A retrospective file analysis design | To determine what the characteristics of the reported cases of sexual abuse in children with intellectual disability, and whether there were differences in the cases of sexual abuse of children with intellectual disability compared to children without intellectual disability | In the period under study, a total of 176 reports of sexual abuse were received. Of these reports, 128 involved a child with intellectual disability | Of the 128 reports of sexual abuse of children with intellectual disability, 85% (n = 109) of the reported cases involved a child placed in residential care, compared with 15% (n = 19) receiving ambulant care. In terms of frequency of abuse, 56% of reported cases occurred only once, and 44% had occurred repeatedly. Most reports came directly from the child (66%, n = 85) who disclosed the incident by telling another person of the incident, whereas 24% (n = 31) were flagged by other individuals involved with the child (such as family members or care providers), and in 9% (n = 11) of cases, the perpetrator was caught in the act. Victim characteristics explored included gender, age, child protection measures, previous victimization, IQ level, and ethnicity. Most cases involved victims who were female (71%, n = 91). Reports involved children of all ages; however, most were adolescents between 12 and 17 (n = 85). A small percentage (30%, n = 38) of victims were aged 6–11, and 4% (n = 5) aged 1–5 years old. Of the 128 reported cases, 99 (77%) of the children were under a provisional family supervision order | Data are not conclusive regarding whether there are more incidents of sexual abuse in these residential institutions or whether these residential institutions report the abuse more often than ambulant care institutions. The information found in the examined files of the inspectorates was not consistent or uniform |
|
| Dion et al., [27] Canada | Incidence study | To determine what the differences are in characteristics of children with substantiated maltreatment reports who have intellectual disability, compared with children without intellectual disability | Sample included 5,797 investigations of substantiated child maltreatment, 656 (11.3%) involved children with intellectual disability | Children with intellectual disability are overrepresented among maltreatment cases. The studies general population of children with intellectual disability is around 1%. However, the percentage of the maltreatment cases for children with intellectual disability was 10%. Children with intellectual disability were more likely than children without intellectual disability to be slightly older, boys, and have attention deficit disorder/attention deficit hyperactive disorder, attachment issues, aggressive behavior, inappropriate sexualized behaviors, and physical disability. Primary caregivers of children with intellectual disability were slightly more likely to have a source of income that was not from full-time work and have fewer social supports. Children with intellectual disability were more likely to have had a case previously opened, compared to families of other children. They were also more likely to have their case remain open for ongoing child protection services, and more likely to be referred to as “beyond the parameters of child protection services.” Children with intellectual disability were also more likely to be formally placed into care, including foster/kinship care, group homes, or therapeutic residential treatment centers | The data represent a limited timeframe/snapshot, which reduces the generalizability of the findings. As this design did not allow the identification of causal relationships, prospective studies are needed. The child’s intellectual disability status was identified by practitioners who completed the file and it included intellectual disability strongly suspected or confirmed by a diagnosis. In the current analysis, only substantiated cases were included |
| Cidav et al. [28] USA | Retrospective cohort study | To estimate the prevalence of foster care involvement among Medicaid children with autism spectrum disorder, children with intellectual disability, and typically developing children; and determine the risk of entry to foster care | Children were excluded from the study if they were already in foster care at the start of the study period (January 2001). The entire sample consisted of 39,422,498 children, 220,271 had autism spectrum disorder; 286,344 had intellectual disability; and 63,703 had autism spectrum disorder and intellectual disability | The prevalence of foster care involvement for autism spectrum disorder increased from 73 per 1000 in the years 2001–2004 to around 98 per 1000 for the years 2004–2007. For all other groups the prevalence did not change over the study period. The prevalence for foster care involvement for children with intellectual disability was 77 per 1000, for children with ASD and intellectual disability it was 68 per 1000, and for typically developing children it was 36 per 1000. The rate of entry for children across the study period included 8.1% for children with autism spectrum disorder, 5.7% for children with intellectual disability, 5.3% for children with autism spectrum disorder and intellectual disability, and 2.6% for typically developing children | The accuracy of the autism spectrum disorder diagnosis in Medicaid claims is unknown. The authors relied solely on a sample of children enrolled in Medicaid for the analysis, and the results may not be generalizable to other populations. Data came from older claims data and did not examine subtypes of autism spectrum disorder |
| Van Horne et al. [29], USA, | Population-based cohort study | This study was conducted to determine whether the risk and predictors of maltreatment in children 2 to 10 years of age differ between those without and with specific birth defects: Down syndrome, cleft lip with/without cleft palate, and spina bifida | The sample consisted of 2,902,385 children, which included 2,895,319 children without birth defects, 3503 children with Down syndrome, 2670 children with cleft lip with/without cleft palate, and 893 children with spina bifida | The age specific prevalence for maltreatment peaked at age three for all groups and declined after this. However, the group without birth defects had a steadier decline as the child aged compared with the birth defect groups who had peaks and troughs across age strata. There were no new substantiated maltreatment reports for children with Down syndrome after the age of 9. Neglectful supervision was the most prevalent maltreatment type across all groups. The birth defect groups were significantly more likely to have a substantiated report for medical neglect compared to the group without birth defects. For children with Down syndrome, compared to the unaffected group – the perpetrator of maltreatment was significantly less likely to be a nonparental relative. Children with Down syndrome were more likely to be born to older, more educated, and married parents which are protective factors for maltreatment. However, when data were adjusted for these factors, children with Down syndrome were 32% more likely to be maltreated compared to the group without birth defects. This study also highlights the risk for children both with and without birth defects, born into families with fewer socioeconomic resources. Mothers’ education level, parity, and lack of private insurance were found as risk factors for maltreatment | Due to state statutes on record retention, only data for substantiated cases and not all alleged or investigated cases were provided for these analyses. As the substantiation decision process may be influenced by multiple external factors (e.g., reporter identity, recovery of physical evidence) and maltreatment is generally underreported, this study likely underestimated the true prevalence of maltreatment in its population. Additionally, family mobility (out of Texas) was not taken into account. Consequently, children moving out of state were not censored and substantiated maltreatment reports from other states were not available for these analyses |
| Lindley [30] USA | Multivariate regression analyses | To determine if children in residential care with intellectual disability were more likely to utilize hospice care during their end-of-life stage. This study sought to measure hospice enrollment and hospice length of stay | The study used a sample of 1538 children, who died at under 21 years of age from a life-limiting, or chronic condition. 289 of those children had intellectual disability | Only 164 children had enrolled in hospice care out of the sample of 1538 children. The average length of stay for those who enrolled in hospice care was 27 days. The odds of children with intellectual disability in residential care enrolling in hospice care was 3 times higher than their counterparts in their last year of life. There was no relationship with length of stay in hospice care. This study indicates that residential care may improve enrollments into hospice care for children with intellectual disability approaching end-of-life | Findings of the study may not be generalized to non-Medicaid population outside of California. Children who reside in other states or have private insurance may experience different outcomes |
| McDonnell et al. [31], USA | Prevalence study | To assess lifetime maltreatment experiences across children with autism spectrum disorder, intellectual disability, both autism spectrum disorder, and intellectual disability, in comparison to children in the general population | 316 children with autism spectrum disorder-only; 291 children with autism spectrum disorder and intellectual disability; 1,280 children with intellectual disability-only; and a population control sample of 3,101 children | Children with intellectual disability-only were more likely to have substantiated reports of sexual abuse, physical abuse, and emotional abuse, compared with all other groups. For physical neglect, all groups (autism spectrum disorder-only, autism spectrum disorder and intellectual disability, and intellectual disability -only) were more likely to have substantiated reports than the control group. Children with autism spectrum disorder-only and intellectual disability-only had significantly more cases of alleged physical abuse and physical neglect then the control group. The autism spectrum disorder and intellectual disability group, and intellectual disability-only group were more likely to have multiple perpetrators reported across cases, compared with the control group. The intellectual disability-only group were more likely to have a perpetrator that was an immediate family member, compared to the control group | The study design could not identify bidirectional relationships between autism spectrum disorder and maltreatment. The control group was not re-evaluated for late autism spectrum disorder diagnosis after age 8, which may have underidentified children with subtle autism spectrum disorder presentations and potentially led to misclassification. Maltreatment data from state social services only reflect cases that were formally reported, which may underestimate the true prevalence of maltreatment and noncaregiver perpetrated-maltreatment |
|
