'I get by with a little help from my friends' : adults with intellectual disability discuss loneliness

Background This study explored 'loneliness' as experienced by adults with intellectual disability, with 'intermittent' to 'limited' support needs.

Method A measure of loneliness was piloted, and qualitative techniques used to develop a greater understanding of the participants' experience.

Results The Loneliness Scale proved valid and reliable and the participants reported loneliness in ways comparable with the general population.

Conclusions The findings demonstrate the effectiveness of combining quantitative and qualitative techniques to enhance understanding of people's perspective when developing support systems to promote their quality of life. Based on participant perspectives, recommendations are made concerning the issues and types of support families and professionals could consider when seeking to assist people with intellectual disability address loneliness. Further investigation of the effects of differing educational and vocational opportunities on people's post-school social networks appears warranted.

Looking for a needle in the haystack: arsonists with intellectual disability in Australia

Arson attracts substantial penalties in Australia, reflecting the serious consequences of the crime. It is often asserted that people with intellectual disability are particularly likely to commit arson offences, and yet it is difficult to establish the prevalence in this population. This study sought to describe the characteristics of those people appearing in Australian Courts who have an intellectual disability and have been charged with arson. A search of the AustLII, LexisNexisAU and WestLawAU databases over the 10-year period from 2003 to 2013 identified 50 arson convictions reported in case law. Of these, six involved an offender with an identified intellectual disability. These offenders were likely to have committed other crimes at the time, or to have prior offences and were likely to receive longer sentences of imprisonment than their non-intellectually disabled counterparts. These findings are discussed in terms of the barriers that exist to understanding more about this under-researched population.

An effective program design to support older workers with intellectual disability to participate individually in community groups

The foreshadowed increase of older people with intellectual disability has become a reality in many developed countries. As these adults age, improved quality of life can be achieved through applications of conjoint policy aims of inclusion and participation. A transition-to-retirement (TTR) program developed for employees of a large multisite disability employment service in Sydney, Australia, used these aims to effect successful partial retirement. The authors describe the program logic of the TTR, detailing its conceptual components as the first step to enabling it to be tested and replicated in other settings. The TTR program has three components: promoting the concept of retirement, laying the groundwork for inclusion of would-be retirees with intellectual disability in the community, and constructing the reality. The third component comprised five stages: planning, locating a group, mapping new routine, recruiting and training mentors, and monitoring and ongoing support. The project's participants were 24 older employees, who replaced 1 day a week of work with membership of a community group and were supported by mentors who facilitated involvement of the participants in their group. Data collected provided information on the implementation of the program, the time and costs expended, and challenges encountered. Key to the model was a coordinator, skilled in generic case management and specific disability interventions (such as active support), who collaborated with others to manage the program. The authors note that by detailing the program logic underpinning the TTR program, they have exposed the hidden work of supporting meaningful inclusion of people with intellectual disability in community groups and added to the limited stock of evidence-informed programs in this area. © 2014 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc.

Anticholinergic burden in older adults with intellectual disability; relationships with multimorbidity and adverse effects

Background: Anticholinergic medications may be associated with adverse clinical outcomes, including acute impairments in cognition and anticholinergic side effects, the risk of adverse outcomes increasing with increasing anticholinergic exposure. Older people with intellectual disability may be at increased risk of exposure to anticholinergic medicines due to their higher prevalence of comorbidities. We sought to determine anticholinergic burden in ageing people with intellectual disability. Methods: Medication data (self-report/proxy-report) was drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a study on the ageing of 753nationally representative people with an IDC40 years randomly selected from the National Intellectual Disability Database. Each individual’s cumulative exposure to anticholinergic medications was calculated using the Anticholinergic Cognitive Burden Scale (ACB) amended by a multi-disciplinary group with independent advice to account for the range of medicines in use in this population. Results: Overall, 70.1 % (527) reported taking medications with possible or definite anticholinergic properties (ACBC1), with a mean (±SD) ACB score of 4.5 (±3.0) (maximum 16). Of those reporting anticholinergic exposure (n=527), 41.3 % (217) reported an ACB score o fC5. Antipsychotics accounted for 36.4 % of the total cumulative ACB score followed by anticholinergics (16 %) and antidepressants (10.8 %). The most frequently reported medicine with anticholinergic activity was carbamazepine 16.8 % (127). The most frequently reported medicine with high anticholinergic activity (ACB 3) was olanzapine13.4 % (101). There was a significant association between higher anti-cholinergic exposure and multimorbidity, particularly mental health morbidity, and some anticholinergic adverse effects such as constipation and day-time drowsiness but not self-rated health. Conclusion: Using simple cumulative measures proved an effective means to capture total burden and helped establish that anticholinergic exposure in the study population was high. The finding highlights the need for comprehensive reviews of medications.

Teachers' perceptions of virtual worlds as a medium for social inclusion for adults with intellectual disability

PURPOSE: The aim of this research was to explore educators' perceptions of a virtual world Second Life TM as an environment for social interaction and social inclusion for the Norwegian adult students with intellectual disability that they supported.

METHOD: Five educators who supported a total of 10 adult students with intellectual disability in computer classes in community Adult Education Centres participated in individual in-depth interviews. The interviews were transcribed verbatim and analysed using a content analysis.

RESULTS: Participants were positive about Second Life although they did not perceive that it offered a successful context for social interaction or inclusion. They identified a number of benefits to using a virtual world and for students participating in virtual world research. Barriers identified included language, literacy, and technology issues along with the complexity of participating independently in a virtual world.

CONCLUSIONS: Some people with intellectual disability can use virtual worlds but the skills required need additional research. Virtual worlds may provide a stimulating, safe, and exciting context for a range of activities but the level of support required by many people is high and consequently expensive.

“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.

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.

Psychotropics and challenging behaviour in people with an intellectual disability

Hilmer and Gnjidic drew attention to the pharmacological management of behavioural problems in nursing home residents, and called for a reduction in inappropriate prescribing and the development of alternative management strategies.1 We extend these concerns to another vulnerable population — people with intellectual disability. Historically, this population is one of the most medicated groups in modern society.

The development of an instrument for assessing cognitive ability and screening for the cognitive decline associated with dementia in people with moderate to profound intellectual disability

Individuals with intellectual disability have a greater risk of developing dementia.The diagnosis of dementia relies on accurate testing of cognitive function however existing tests have limited utility in people whose intellectual disability is moderate or greater. A new test was developed and underwent preliminary testing to determine use across a wider ability spectrum. The Cognitive Baseline & Screener for People with Intellectual Disability (CBS-ID) was administered to a sample of 17 dyads (n=34) (people with intellectual disability (who completed CBS-ID) and caregivers (who provided an independent rating of function)).The CBS-ID performed well on several usability metrics across all intellectual disability level and was highly correlated with existing measures of cognitive function to which it was compared.Further research with a larger sample is needed to assess the test's ability to detect change in cognition over time & determine if it aids the process of diagnosing dementia.

Self-related quality of life scales for people with an intellectual disability : a reply to Ager & Hutton

An earlier publication by the present author concerning quality of life (QoL) measurement has been critiqued by A. Ager and C. Hatton. The present paper addresses the issues raised. It commences with a reappraisal of the Life Experiences Checklist and confirms the present author's view that this instrument is not adequate to measure QoL in accordance with contemporary understanding of the construct. It is argued that QoL scales should include both objective and subjective measurements across a minimum set of domains adequate to embrace the whole life experience. Finally, the usefulness of QoL measurement for people with intellectual disability is debated.

Detecting and treating depression in people with mild intellectual disability : the views of key stakeholders

There is a pressing need for the development of programs for the early identification and treatment of depression in individuals with mild intellectual disability. The aim of this study was to ascertain the perspective of 64 key stakeholders (people with intellectual disability, healthcare professionals, family/caregivers & support workers) regarding the risk factors and characteristics of depression, the support and service needs of individuals with intellectual disability/depression and those who care for them. Findings enhance our understanding of depression and its risk factors in people with mild intellectual disability and endorse the need for the development of screening and intervention programs suitable for delivery by staff in agencies providing services to people with mild intellectual disability.

Meeting in the middle: Improving communication in primary health care consultations with people with an intellectual disability

The increased presence and participation in Australian society of people with an intellectual disability provides challenges for the provision of primary health care. General practitioners (GPs) identify themselves as ill equipped to provide for this heterogeneous population. A major obstacle to the provision of appropriate health care is seen as inadequate communication between the GP and the person with an intellectual disability, who may or may not be accompanied by a carer or advocate. This qualitative study in which five GPs, three people with intellectual disability, seven carers and two advocates (parent and friend) were interviewed was conducted in Brisbane, Australia. The aim was to better understand the factors that have an impact upon the success of communication in a medical consultation. Findings suggested that GPs were concerned with the aspects of communication difficulties which influenced their ability to adequately diagnose, manage and inform patients. Implications for practice management were also identified. People with intellectual disability reported frustration when they felt that they could not communicate adequately with the GP and annoyance when they were not included in the communication exchange. Carers were strong advocates for the person with intellectual disability, but indicated insufficient skill and knowledge to provide the level of assistance required in the consultation. The outcome was a model of cooperation that outlined the responsibilities of all players in the medical encounter, prior to, during and after the event.

Sport in the lives of young people with intellectual disabilities: negotiating disability, identity and belonging

Whilst there is now a growing body of sociological research on the role of sport in the social, gender and identity rehabilitation of people with physical impairments, research on the role of sport in the lives of people with intellectual disabilities primarily focuses on improving fitness, health and social interactions. Yet sport is not only a form of physical exercise, competition or leisure—it is also a powerful social institution within which social structures and power relations are reproduced and, less frequently, challenged. This paper provides insights into the role of sport and physical activity in the lives of four young Australians with intellectual disabilities or cognitive limitations from their own perspectives. Data from life history interviews elicits rich and in-depth insights, revealing that the meanings these young people give to their sporting experiences include—but also go beyond—concerns with fitness, health and social interactions. Though by no means representative of the role of sport for all young people with intellectual disabilities, it is evident that these four young people use sport to negotiate complex emotional worlds around disability, identity, and belonging—much like their physically impaired counterparts.

Digital technologies and musical participation for people with intellectual disabilities

Research on the aspirations of people with intellectual disabilities documents the importance of alternative zones of inclusion where they can assert their own definitions of ability and normality. This stands in contrast to assumptions concerning technology and disability that position technology as ‘normalising’ the disabled body. This paper reports on the role of a digital music jamming tool in providing access to creative practice by people with intellectual disabilities. The tool contributed to the development of a spatio-temporal zone to enable aesthetic agency within and beyond the contexts of deinstitutionalised care. The research identifies the interactions among tools, individuals and groups that facilitated participants’ agency in shaping the form of musical practice. Further, we document the properties of emergent interaction - supported by a tool oriented to enabling music improvisation - as potentially resisting assumptions regarding normalisation.

The development of an intervention to promote the capacity to wait in children with intellectual disability

Aim: Individuals with intellectual disability (ID) often have difficulty with waiting, an important aspect of everyday life. Successful waiting require cognitive, emotional and behavioural self-regulation, and is an essential element in the capacity to delay gratification. Method: We developed an intervention to provide parents with the knowledge and strategies to promote their child’s capacity to wait. The intervention was grounded in previous work about the skills underpinning successful waiting, such as goal-setting, understanding time, and managing frustration. Eleven parents of children with ID (mean CA 9.4 years; mean MA 47 months) participated in an intervention trial. Following pre-testing of their child’s capacity to wait and delay gratification, parents attended a 1 day workshop that was followed by monthly phone discussions with the researchers to monitor progress and provide advice. Post-testing was undertaken 1 year later. Results: Compared with a wait-listed control group, children whose parents had completed the intervention displayed significant improvements in their capacity to wait on a delay of gratification task. Parents reported that their child had become more successful in everyday waiting situations. Conclusion: The results of this pilot study are promising and pave the way for larger-scale interventions to improve self-regulatory skills in people with ID.