Gendered service delivery : a masculine and feminine perspective on staff gender

Despite acknowledgement that paid caregivers have a significant impact on the lives of people with intellectual disability, the subjective experience of staff gender is rarely considered in research. Qualitative data from a study on the sexual health needs of men and boys with intellectual disability is presented. We designed this study to determine what impact staff gender has on the sexual health needs of men and boys with intellectual disability. Findings suggest that although staff traverse the same geographies of care, they do it in uniquely gendered ways. Staff gender is an important consideration when dealing with sexual health matters and can enhance the type and quality of relationships between people with intellectual disability.

Reflections on being a first generation self-advocate: belonging, social connections, and doing things that matter

Background Despite good policy intentions, people with intellectual disability continue to be socially excluded. Social geographers suggest the potential of self-authored spaces as catalysts for social inclusion. One such space, self-advocacy, is commonly perceived as part of a political movement for social change rather than a vehicle for social inclusion of its members. This paper investigated what involvement in self-advocacy has meant to long-term members of a self-advocacy group in Victoria, Australia. Methods In-depth interviews were conducted with 12 self-advocates about their reflections on involvement in the group. These data together with the commentary of 5 self-advocates during interviews with 18 self-advocacy supporters about their recollections of involvement in the group were transcribed and analysed thematically. Findings Through their involvement in self-advocacy, members of the group had gained a sense of belonging, social connections, and purposeful occupation, which included paid project work, lobbying, and organisational leadership and management. Conclusions This study suggests that self-advocacy groups can be places that foster social inclusion, potentially offering “membership” of an exclusive group, a wider social movement and of mainstream society.

A collaborative group method of inclusive research

Funding bodies in Australia and the United Kingdom require research on issues that affect the lives of people with intellectual disability to be inclusive. Debate continues about the nature and benefits of inclusive research, which has become an umbrella term encompassing a broad spectrum of approaches.

Reflections on doing inclusive research in the 'making life good in the community' study

BACKGROUND: The involvement of people with intellectual disability in research is framed as inclusive, denoting their active participation in its processes. However, questions are raised about ownership and control, genuineness of involvement, and the need for honest accounts to develop practice. Such issues are particularly pressing in Australia, where there is the absence of a strong self-advocacy movement to partner with academics or hold them to account. METHOD: Action research was used to reflect on and progressively refine the support provided by a research mentor to a co-researcher with intellectual disability employed on a large multimethod study. RESULTS AND CONCLUSIONS: Accepting the co-researcher's strengths and designing support on the job rather than teaching them to "pass" before venturing out in the field are important in ceding control. Support required for a co-researcher is more than practical and involves developing a relationship that can actively challenge views and foster reflection. Ownership of questions and disseminating of outcomes are hampered by contextual factors such as tender processes, short-term positions, and a failure to acknowledge the support required to present findings.

Community integration or community exposure? A review and discussion in relation to people with an intellectual disability

Background: This paper reviews the issue of integration as it applies to people with an intellectual disability. A compelling finding is the almost exclusive orientation of the literature to physical integration within the general community of non-disabled people. Moreover, it seems to be generally assumed that the more frequently people experience such integration the better their lives will be. Methods: We question the validity of this assumption on several grounds. It is social, not physical integration, that has a reliable positive influence on well-being. This is an important conclusion as some disabled people find effective social integration with the general community extremely difficult to achieve. Because of this, the consequences of an overly enthusiastic program of integration for such people has more potential to be more stressful than beneficial. Results: We further argue that, as integration is being pursued to benefit the individual, the essential goal of service provision should be to achieve a sense of community connectedness, rather than being concerned with physical integration within the general community.
Conclusion: It is proposed that such connectedness is more likely to be achieved within the community of people with an intellectual disability.

The development of the nutrition and activity knowledge scale for use with people with an intellectual disability

Background Obesity is an increasing health problem for many Australians, no less so among people with an intellectual disability. Behaviour change aimed at improving nutritional intake and increasing levels of physical activity is a requirement for the reduction of obesity. An essential part of this process is to first ascertain the level of knowledge and beliefs people with an intellectual disability have about these behaviours.

Methods The aim of this study was to develop and psychometrically evaluate a scale to assess levels of nutritional and physical activity knowledge among people with an intellectual disability.

Results Seventy-three people with an intellectual disability completed the interview-rated scale at time 1 and 66 of them completed it again at a 3-week re-test.

Conclusions The scale demonstrated strong factorial construct validity, high internal consistency and good temporal stability. The applications of this scale in future research and in intervention programmes are discussed.

Young people with an intellectual disability: risk and resilience.

There is a large body of literature about personal risk and resilience among children and adolescents from a variety of subpopulations. However, in intellectual disability research, resilience has almost exclusively been investigated and reported at the level of family stress and coping rather than an individual child's capacity to function adaptively despite severe risk. In this study young people with an intellectual disability, family members and non-family members (carers, teachers and family friends) were interviewed and asked about the young people’s relationships, coping styles, behaviour patterns and resilience. The main features placing these young people at risk included having autism or inflexible patterns of behaviour, displaying some forms of challenging behaviour, difficulty with receptive and expressive communication, living in families with high competing demands for time and living in a relatively unaccommodating community environment. The main factors leading to resilience were an attractive appearance/disposition, ability to get one’s message across, ability to adapt behaviour to changing contexts, low family stress levels and high sense of competence, stable relationships with supportive others and an accommodating/accepting community environment (both school and social).

Factors influencing obesity in people with an intellectual disability

These studies indicate that obesity levels, best measured by weight not the Body Mass Index, are high among people with an intellectual disability. Poor knowledge of nutrition and exercise, together with a body image that says "I'm OK", and carers' tolerance for overweight, are indicators of obesity in this population.

Perceptions of stress among people with an intellectual disability

A new stress scale was devised based on issues raised by people with an intellectual disability and entitled the Lifestress Inventory. The Inventory was used in a number of studies in order to assess the impact of daily hassles and life events on their perceived stress levels and quality of life. Data suggests that they experience general worries, negative interpersonal relations with others, and frustration with their restricted coping skills as their principal areas of stress.

Putting human rights into practice with people with an intellectual disability

Human rights create a protective zone around persons and allow them the opportunity to further their own valued personal projects without interference from others. In this paper we apply the concept of human rights to people with an intellectual disability. First we briefly analyze the concept of human rights, their structure, and justification. Second, we directly apply our model of human rights to persons with an intellectual disability and argue that it has the resources to bridge the perceived gap between rights and needs and to offer practitioners ethically defensible practice guidance. We supplement this abstract analysis with a case example. Finally we conclude with some reflections on the future of a human rights viewpoint in the arena of intellectual disability.

An investigation into the subjective wellbeing of people with an intellectual disability

This thesis investigated the theory of subjective wellbeing homeostatic control for a sample of New Zealand people with mild to moderate intellectual disability, compared to non-disabled people. This involved three linked quantitative studies that investigated the internal buffers of self-esteem, control and optimism.