Social adaptation of children with mild intellectual disability : effects of partial integration within primary school classes

Examined the social adaptation of 32 children in grades 3–6 with mild intellectual disability: 13 Ss were partially integrated into regular primary school classes and 19 Ss were full-time in separate classes. Sociometric status was assessed using best friend and play rating measures. Consistent with previous research, children with intellectual disability were less socially accepted than were a matched group of 32 children with no learning disabilities. Children in partially integrated classes received more play nominations than those in separate classes, but had no greater acceptance as a best friend. On teachers' reports, disabled children had higher levels of inappropriate social behaviours, but there was no significant difference in appropriate behaviours. Self-assessments by integrated children were more negative than those by children in separate classes, and their peer-relationship satisfaction was lower. Ratings by disabled children of their satisfaction with peer relationships were associated with ratings of appropriate social skills by themselves and their teachers, and with self-ratings of negative behaviour. The study confirmed that partial integration can have negative consequences for children with an intellectual disability.

A novel mutation of AFG3L2 might cause dominant optic atrophy in patients with mild intellectual disability

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Promoting resilience in children with intellectual disability : a randomized controlled trial in Australian schools

Children with intellectual disability are more vulnerable to adverse developmental outcomes because of the lifelong risks associated with cognitive impairment. Difficulties with learning and adaptive behaviour inevitably produce considerable personal, social and economic disadvantage. Of concern is consistent evidence that psychiatric disorders affect a substantial proportion of people with intellectual disability. The estimated prevalence rate of between 35 and 49 % is three times that found in the general population (Wallander, Dekker, & Koot, 2006). Until recently, mental illness has been relatively neglected for people with intellectual disability, especially in relation to prevention or early detection (Kolaitis, 2008) and most research to date has been descriptive rather than focused on intervention (Bouras, 2013). Yet a considerable body of evidence demonstrates that efficacious interventions do exist for preventing psychopathology and enhancing resilience in typically developing children and adolescents (see Mallin, Walker, & Levin, 2013 for a review). In order to prevent the high comorbidity of intellectual disability and psychopathology, there is a compelling need for evidence-based practices that promote the resilience of individuals with intellectual disability (Matson, Terlonge, & Minshawi, 2008). In this chapter, we describe a randomized controlled trial of an intervention that was designed to enhance the resilience of a group of children with mild intellectual disability as they prepared to make the transition to high school. We report results from our evaluation of this intervention, and reflect on the difficulties of providing successful interventions for children whose lives are complicated not only by intellectual disability, but also by a range of contextual disadvantages.

Loneliness in individuals with intellectual disability

Although some substantial issues exist regarding measurement of loneliness in individuals with intellectual disability, research has generally concluded that members of this group are more likely to (1) appear to others to be lonelier than their typically developing peers and (2) self-report greater loneliness than typically-developing individuals. As examples, in a study by Solish, Perry, and Minnes (2010), parents of children with intellectual disability reported fewer friendships and social activities for their children than parents of typically-developing children. Oates, Bebbington, Bourke, Girdler, and Leonard (2011) found that approximately one-third of the parents in their population study of children with Down syndrome reported that their child had no friends. When questioned directly about the experience of loneliness, only boys with mild intellectual disability reported more loneliness than their same age, typically-developing peers (Williams & Asher, 1992).

Psychiatric disturbances in children with intellectual disability : Prevalence, risk factors and assessment

Children with intellectual disability are at increased risk for emotional and behavioural problems, but many of these disturbances fail to be diagnosed. Structured checklists have been used to supplement the psychiatric assessment of children without intellectual disability, but for children with intellectual disability, only a few checklists are available. The aim of the study was to investigate psychiatric disturbances among children with intellectual disability: the prevalence, types and risk factors of psychiatric disturbances as well as the applicability of the Finnish translations of the Developmental Behaviour Checklist (DBC-P) and the Child Behavior Checklist (CBCL) in the assessment of psychopathology. The subjects comprised 155 children with intellectual disability, and data were obtained from case records and five questionnaires completed by the parents or other carers of the child. According to case records, a psychiatric disorder had previously been diagnosed in 11% of the children. Upon careful re-examination of case records, the total proportion of children with a psychiatric disorder increased to 33%. According to checklists, the frequency of probable psychiatric disorder was 34% by the DBC-P, and 43% by the CBCL. The most common diagnoses were pervasive developmental disorders and hyperkinetic disorders. The results support previous findings that compared with children without intellectual disability, the risk of psychiatric disturbances is 2-3-fold in children with intellectual disability. The risk of psychopathology was most significantly increased by moderate intellectual disability and low socio-economic status, and decreased by adaptive behaviour, language development, and socialisation as well as living with both biological parents. The results of the study suggest that both the DBC-P and the CBCL can be used to discriminate between children with intellectual disability with and without emotional or psychiatric disturbance. The DBC-P is suitable for children with any degree of intellectual disability, and the CBCL is suitable at least for children with mild intellectual disability. Because the problems of children with intellectual disability differ somewhat from those of children without intellectual disability, checklists designed specifically for children with intellectual disability are needed.

Social work with marginalised people who have a mild or borderline intellectual disability : practicing gentleness and encouraging hope

People with mild or borderline intellectual disabilities are a group of people who usually do not meet the eligibility criteria for specialist disability services, yet are high users of many generalist services, such as mental health, child protection, and criminal justice systems. They may traverse many services, often entering, exiting, and returning to the same service providers with few positive results. This article explores the practice approach of the Meryton Association, a medium-sized nongovernment agency located in Brisbane, Australia. The Meryton Association provides social work support to people with mild to borderline intellectual disabilities, actively assisting this group to build relationships, resources, knowledge, and autonomy in their everyday lives. Using qualitative in-depth interviews with Meryton Association staff and secondary analysis of Meryton Association policy and practice documents, the challenges and opportunities of using this practice approach have been documented. The article proposes that specialist services are needed that use a developmental approach, stress the importance of relationship, and the need to practice gentleness and hope in social worker-client interaction.

UBE2A Deficiency Syndrome: Mild to Severe Intellectual Disability Accompanied by Seizures, Absent Speech, Urogenital, and Skin Anomalies in Male Patients

We describe three patients with a comparable deletion encompassing SLC25A43, SLC25A5, CXorf56, UBE2A, NKRF, and two non-coding RNA genes, U1 and LOC100303728. Moderate to severe intellectual disability (ID), psychomotor retardation, severely impaired/absent speech, seizures, and urogenital anomalies were present in all three patients. Facial dysmorphisms include ocular hypertelorism, synophrys, and a depressed nasal bridge. These clinical features overlap with those described in two patients from a family with a similar deletion at Xq24 that also includes UBE2A, and in several patients of Brazilian and Polish families with point mutations in UBE2A. Notably, all five patients with an Xq24 deletion have ventricular septal defects that are not present inpatients with a point mutation, which might be attributed to the deletion of SLC25A5. Taken together, the UBE2A deficiency syndrome in male patients with a mutation in or a deletion of UBE2A is characterized by ID, absent speech, seizures, urogenital anomalies, frequently including a small penis, and skin abnormalities, which include generalized hirsutism, low posterior hairline, myxedematous appearance, widely spaced nipples, and hair whorls. Facial dysmorphisms include a wide face, a depressed nasal bridge, a large mouth with downturned corners, thin vermilion, and a short, broad neck. (C) 2010 Wiley-Liss, Inc.

“I want to see the Queen” : experiences of service use by ageing people with an intellectual disability

People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic indivdualised planning similar to the UK concept of person-centred planning.

Intellectual disability and sexuality : attitudes of disability support staff and leisure industry employees

Background: The attitudes of support staff and others in the community towards the sexuality of individuals with an intellectual disability (ID) have the potential to influence opportunities for normalised life experiences in the area of sexuality. ----- Method: A sample of 169 disability support staff and 50 employees from leisure and services industries completed the Attitudes to Sexuality Questionnaires (Individuals with an Intellectual Disability [ASQ–ID], and Individuals from the General Population [ASQ–GP]). ----- Results: Support staff and leisure workers reported generally positive attitudes towards the sexuality of individuals with an ID, but men were seen as having less self-control than women. Support staff were more cautious in their views about parenting, and both groups considered a lower level of sexual freedom to be desirable for women with an ID compared to women who are developing typically. Conclusions Attitudes of both groups are generally quite positive in relation to ID and sexuality.

The role of informal networks in providing effective work opportunities for people with an intellectual disability

Being in paid employment is socially valued, and is linked to health, financial security and time use. Issues arising from a lack of occupational choice and control, and from diminished role partnerships are particularly problematic in the lives of people with an intellectual disability. Informal support networks are shown to influence work opportunities for people without disabilities, but their impact on the work experiences of people with disability has not been thoroughly explored. The experience of 'work' and preparation for work was explored with a group of four people with an intellectual disability (the participants) and the key members of their informal support networks (network members) in New South Wales, Australia. Network members and participants were interviewed and participant observations of work and other activities were undertaken. Data analysis included open, conceptual and thematic coding. Data analysis software assisted in managing the large datasets across multiple team members. The insight and actions of network members created and sustained the employment and support opportunities that effectively matched the needs and interests of the participants. Recommendations for future research are outlined.

Ageing of people with an intellectual disability: Effective training for frontline workers

While the attainment of late life represents a significant achievement for people with an intellectual disability, increased life expectancy has resulted in growing concerns about the extent to which disability service providers are ready to meet the changing needs of increasing numbers of older people and facilitate their ongoing social inclusion. Training of frontline disability staff is widely accepted as an effective strategy for increasing organisational capacity to contribute to improved quality of life for people with an intellectual disability. The study identifies training needs analyses and 'ready-to-deliver' training programs for frontline disability services staff working with adults with an intellectual disability who are ageing, assesses whether the training programs contribute to improved quality of life outcomes for service users, and makes recommendations for future research and development of training for disability services staff who work with older people with intellectual disability.

The assessment of mental health in children with intellectual disability

Aim: Individuals with intellectual disability (ID) have higher rates of mental health problems than the general population. Assessment tends to rely heavily on self-report, but persons with ID often have difficulties in identifying and describing their own thoughts and feelings. Measures that are psychometrically sound with typically developing populations may not be as robust in samples with ID. The aim of the current study was to examine a range of self-report measures for assessing the mental health of children with ID, and to consider the appropriateness of minor modifications to those instruments. Method: The participants were 58 children with ID (mean 11.7 years) attending Year 6 in mainstream primary schools. At the first time point they completed four established measures of depression, anxiety and mood. Minor modifications were made to wording and format at re-administration six months later. Results: Internal consistency varied considerably across measures. Modifications resulted in small or no improvements, but the results were relatively consistent over time and across similar measures. Some gender differences were evident. Conclusions: The findings confirm the difficulties that children with ID may have when responding to self-report measures of mental health, and suggest that care should be taken in choice of instruments. While modifications can produce small improvements, it is clear that more robust measures of mental health are needed for persons with ID.

Resiliency profiles of children with intellectual disability and their typically developing peers

Intellectual disability (ID) is associated with a range of risk factors that make children more vulnerable to adverse developmental outcomes including mental health problems. Nevertheless, some children with ID do much better than others, presumably because of the presence of protective factors that increase their resilience. The current study compared resiliency profiles of children with ID (n = 115, mean age 11.9 years) and their typically developing peers (n = 106, mean age 11.8 years) using the Resiliency Scales for Children and Adolescents (Prince-Embury, 2007) and the Healthy Kids Resilience Assessment (Constantine, Bernard & Diaz, 1999). In many respects children with ID and their typically developing peers reported similar levels of the protective factors that are associated with resilience. However, the children with ID reported higher levels of emotional sensitivity and lower tolerance, as well as fewer future goals. Compared with typically developing children, those with ID reported more support at school and less support within their communities. These findings have important implications for interventions that aim to promote positive developmental outcomes and to prevent the adverse sequelae that have been associated with low intelligence.