Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia

BACKGROUND: Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. METHOD: The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. RESULTS: The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. CONCLUSIONS: The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.

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.

Tracking the nomadic life of the eductional researcher: what future for feminist public intellecturals and the performative university?

Is the idea of the liberal university dead, has the postmodern university any chance of being emancipatory, has the theory–practice divide merely collapsed in an era of 'new knowledge work', or has the university just become one aspect of market states and global capitalism? Knowledge-based economies locate universities as central to the commodification and management of knowledge, while at the same time the legitimacy of the university and the academic as knowledge producers is challenged by postmodernist, feminist, post-colonial and indigenous claims within a wider trend towards the 'democratisation of knowledge' and a new educational instrumentalism and opportunism. What becomes of the educational researcher, and indeed their professional organisations, in this changing socio-political and economic scenario? Is our role one of policy service, policy critique, technical expert or public intellectual? In particular what place is there for feminist public intellectuals in a so-called era of post feminism and public–private convergence? The paper draws on feminist and critical perspectives to mount a case for the importance of the public intellectual in the performative postmodern university.

Equal to life: empowerment through drama and research in a drama group for people with disabilities

This article draws from findings of qualitative research of a community- based drama and theatre group for adults with intellectual disabilities. The article considers constraints experienced by people with disabilities and explores the ways that experiences in drama and theatre can be particularly empowering for them. The article also reveals the ways that participants can increasingly become collaborators in the research and are empowered through the research process and through the opportunity to have their voices heard.

Further examination of relationships between events and psychiatric symptoms in adults with intellectual disability

Background: It has been proposed that people with intellectual disability (ID) might be similar to the general population in the way they respond to significant life events. Some preliminary findings have demonstrated that adults with ID who have experienced recent life events have an increased probability of having psychiatric problems. The aims of the present study were to determine whether previous findings can be replicated, and to examine the influence of additional diagnoses associated with ID on the strength of relationships between life event frequency and psychiatric problems.

Methods: Adults with ID (n = 624), living either in staffed community accommodation or in family or foster homes, were assessed on the Developmental Behaviour Checklist for Adults (DBC-A) and a 37-item life events checklist. Carers who knew the person well acted as proxy informants.

Results: People living in staffed accommodation experienced more life events than people living with natural or foster families. Life event frequency predicted DBC-A total score, five of six sub-scale scores, and caseness status, after significant demographic factors were taken into account. However, the strength of correlations between life event frequency and DBC-A total score varied among sub-groups identified by type of developmental disability and level of ID.

Conclusions: Weak but significant associations between emotional and behavioural problems and life events experienced by adults with ID were demonstrated, but it was also shown that the strength of such associations varies among sub-groups of this heterogeneous population. Future research needs to take account of the circumstances surrounding the life changes, the period of time over which changes might have taken place, and the meaning that the person might attach to the changes. Research into the causal relationship between exposure to life events and the onset of psychiatric problems is also warranted.

Early detection of depression and associated risk factors in adults with mild/moderate intellectual disability

The aim of this study was to determine the presentation and risk factors for depression in adults with mild/moderate intellectual disability (ID). A sample of 151 adults (83 males and 68 females) participated in a semi-structured interview. According to results on the Beck Depression Inventory II, 39.1% of participants evinced symptoms of depression (2 severe, 14 moderate, and 43 mild). Sadness, self-criticism, loss of energy, crying, and tiredness appeared to be the most frequent indicators of depression or risk for depression. A significant difference was found between individuals with and without symptoms of depression on levels of automatic negative thoughts, downward social comparison and self-esteem. Automatic negative thoughts, quality and frequency of social support, self-esteem, and disruptive life events significantly predicted depression scores in people with mild/moderate ID, accounting for 58.1% of the variance.

Individual characteristics associated with community intergration of adults with intellectual disability

Background The purpose of this study was to identify individual characteristics associated with community integration of adults with an intellectual disability.

Method A group of 37 males with high support needs, and who had previously lived in a large institution, participated in the study. Using proxy respondents, data were collected on three measures of community integration, and on the participants' adaptive and maladaptive functioning. Chronological age and years of institutionalisation were also examined for their associations with community integration.

Results Level of daily living skills predicted life circumstances. There were no significant associations among the measures of community integration.

Conclusions The examination of the relationships between participant characteristics and community integration produced similar conclusions to previous research. Only daily living skills scores were uniquely associated with variations in life circumstances. Further research is required to determine whether these findings will be replicated with other cohorts of participants.

'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.

The utility of the personal wellbeing index intellectual disability scale in an Australian sample

Background Subjective wellbeing (SWB) in people with intellectual disabilities has been the focus of increased interest in the identification of support needs and as an outcome measure for interventions and service delivery evaluations. It is therefore important to conduct further research in this area, and to develop appropriate scales to measure SWB.

Methods A new scale, the Personal Wellbeing Index-Intellectual Disability (PWI-ID) was administered to 114 adults with mild (n = 82) or moderate (n = 32) level ID in Victoria, Australia.

Results The PWI-ID demonstrated good reliability and validity. A comparison of the findings with previous research indicates that participants' SWB levels are within the normative range, and are similar to those reported by the general population.

Conclusions The results support the notion that individuals with ID do not experience life quality lower than normal, which can be explained theoretically by the Theory of Subjective Wellbeing Homeostasis. The use of the PWI-ID may ultimately assist in ensuring that the needs of people with ID are being met and inform the planning and delivery of congruent resources and services.

The measurement of subjective wellbeing in people with intellectual disability in Australia

The importance of measuring quality of life, and most particularly the personal wellbeing of people with intellectual disabilities (ID), is now recognized. The measurement of wellbeing is an important component of program evaluation and can assist in the identification and planning of individualized support needs. There remains, however, a need for further research in this area. This paper describes a new scale, the Personal Wellbeing Index Intellectual Disability Scales (PWI-ID), which has been shown to be valid and reliable. Data is presented regarding its use in the measurement of wellbeing in people with ID and the focus of discussion is on its advantages and limitations.