Consumer participation in designing community based consumer-directed disability care : lessons from a participatory action research-inspired project

User participation has been embraced worldwide as a means to provide better consumer outcomes in health and community care. However, methodologies to achieve effective consumer engagement at the programme design level have remained under-explored. The purpose of this study was to evaluate the impact of a Participatory Action Research (PAR)-inspired methodology used to develop a consumer-directed community care/individualised funding service model for people with disabilities. A retrospective analysis of case notes and internal reports for the first 6 years of an ongoing project were examined. The findings suggest that PAR methodologies need to take into account community development, group support, and capacity building as well as succession planning and risk management issues in order to facilitate the often lengthy policy and project development process. Drawing on these findings, this article discusses five lessons and their methodological implications for PAR in a health or social policy/programme design context.

Low back pain and disability in community-based women : prevalence and association factors

Objective: Although low back pain is characterized by both pain and disability, there is a paucity of studies that have concurrently examined risk factors for these features in community-dwelling women. We aimed to investigate the prevalence and identify factors associated with both back pain and disability.

Design: A questionnaire was mailed to 542 women from a community-based research database. Detailed demographic data were collected, including participants' menopause, relationship, and employment status. Point and period prevalence estimates for back pain were derived. Participants were classified based on pain intensity and disability scores calculated from the Chronic Pain Grade Questionnaire, and factors associated with high levels of pain and disability were examined.

Results: A total of 506 (93.4%) women completed the questionnaire. More than 90% of participants had experienced low back pain, with 75.1% and 22.5% reporting pain in the past 12 months and currently, respectively. Seven percent of women reported a high level of disability and 16% reported high-intensity pain. Women with higher levels of disability were more likely to have a higher body mass index and to have pain currently, whereas those with greater pain intensity were more likely to be younger, have a higher body mass index, not be employed outside the home, drink alcohol, and have current pain.

Conclusions: Low back pain is a common problem for community-based women. A high body mass index and current pain were factors independently associated with both high pain intensity and disability. Longitudinal investigation is required to determine the predictive nature of these factors and their potential role in preventing pain and disability.

'The witness who saw, /He left little doubt' : a comparative consideration of expert testimony in mental disability law cases in common and civil law systems

The question of how courts assess expert evidence - especially when mental disability is an issue - raises the corollary question of whether courts adequately evaluate the content of the expert testimony or whether judicial decision making may be influenced by teleology (cherry picking evidence), pretextuality (accepting experts who distort evidence to achieve socially desirable aims), and/or sanism (allowing prejudicial and stereotyped evidence). Such threats occur despite professional standards in forensic psychology and other mental health disciplines that require ethical expert testimony. The result is expert testimony that, in many instances, is at best incompetent and at worst biased. The paper details threats to competent expert testimony in a comparative law context - in both the common law (involuntary civil commitment laws and risk assessment criminal laws) and, more briefly, civil law. We conclude that teleology, pretextuality, and sanism have an impact upon judicial decision making in both the common law and civil law. Finally, we speculate as to whether the new United Nations Convention on the Rights of Persons with Disabilities is likely to have any impact on practices in this area. Copyright © 2009 John Wiley & Sons, Ltd.

Double disability : lived experience of Australian tertiary students with ME/CFS

This research is the exploration of the lived experience of tertiary students in Australia with the medical condition usually known as ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome) seeking to explore issues of equity and human rights from the perspective of the Disability Discrimination Act 1992. Students feel that their difficulties are not caused just by the illness itself but by the failure of the tertiary institutions to understand the effects of this illness on them, the student, especially within the areas of accommodations and assessments. Their lived experiences are studied to ascertain if their experiences differ from those of other tertiary students. Forty participants came from every state and territory of Australia and twenty -four of Australia's universities as well as eight Technical and Further Education/Open Training Education Network (TAFE/OTEN) colleges are represented. The selection of the chosen methodology, Critical Ethnography from a Habermasian perspective, has been circumscribed by the medical condition which placed limitations on methodology and also data gathering methods. Non-structured stories, in which the participants wrote of their lived experience as students, were considered the most appropriate source of data. These were transmitted by electronic mail (with some by postal mail) to the researcher. A short questionnaire provided a participant background to the stories and was also collated for a composite overview of the participants. The stories are analysed in a number of ways: six selected stories are retold and the issues arising from these stories have been weighed against the remainder of the stories. Four intertwined themes were constructed from the issues raised in each story. Apparent infringements of the Disability Discrimination Act (1992) which impact on quality of life, human rights and equity are found. No accommodations are being made by the academic institutions for the cognitive dysfunctions and learning difficulties. Students are stigmatised and lack credibility to negotiate appropriate academic accommodations. A possible means of improving the ability of students to negotiate appropriate accommodations is explored. Finally the researcher reflects on her own involvement in the research as an 'insider' researcher.

Meaning of home : a comparison of the meaning of home as identified by samples of Victorians with, and without, an intellectual disability

This phenomenological study of the meaning of home from the perspectives of people with and without an intellectual disability sought to identify, (a) any common ‘essence’ of meaning held by and, (b) the nature of any differences of perception between, the groups. Purposive samples of 18 people with an intellectual disability and 21 non-disabled people were surveyed using a semi-structured interview to ascertain their experiences of home and 'non-homes'. Inductive analysis of the data revealed a shared understanding of the meaning of home at a fundamental level. This shared meaning of home was found to comprise: the ability to exert control over an area; having a personalised space; feeling content with the living situation; a sense of familiarity with the setting; a set of behaviours and routines usually only enacted when at home; common names and uses for rooms; socialising at home with others; the importance of a positive social atmosphere in the home; and, recognition of places as non-homes because they lacked one or more of these attributes. Further analysis revealed the essence of home is its experience as the place where stress is most reduced or minimised for the individual. The study demonstrates that the concept of stress is superordinate to previously identified concepts considered fundamental to home such as privacy, control and non-homes. Major differences between the two samples were largely differences of degree with people who have an intellectual disability reporting the same fundamental attributes of home as people who do not have an intellectual disability, but in a less elaborated form. Principal among these differences of degree was the notion of control over the home and its derivative elements which encompassed the whole dwelling including its setting for people without an intellectual disability but was very restricted for people with an intellectual disability being largely confined to the person's bedroom. Socialising in or from the home was also very limited for people with an intellectual disability in comparison with that experienced by non-disabled informants with the former group conveying an impression of leading significantly socially isolated lives at home. The major implications of this study are related to the meaning of home per se, to residential service provision to people with an intellectual disability, and to future research.

Employer satisfaction with employees with a disability

Previous research that addressed determents of employer satisfaction with employees with a disability (EWDs) mainly targeted employers’ perceptions of workplace performance. This thesis used quantitative and qualitative approaches to examine perspectives of employers and disability employment service providers (DESPs) on the complex nature of employer satisfaction with EWDs within an ecological paradigm. Three studies were undertaken. The first analysed questionnaire ratings for 656 employers of workplace performance of EWDs. Analyses found: (1) employers rated EWDs lower than non-disabled employees (NDEs) on employer satisfaction and work performance; (2) determinants of employer satisfaction differed between EWDs and NDEs; (3) employers were more satisfied with EWDs than NDEs in relation to work performance; (4) lower comparative ratings on employer satisfaction for EWDs influenced future employment intentions toward people with a disability; (5) employers’ perceptions of job-match affected ratings on employer satisfaction and performance; (6) effects of job-match on employer satisfaction were direct and indirect, through work performance; and (7) variables representing job-match were relatively more important to employers’ decisions to hire and retain a person with a disability than variables representing Social Concerns and employer/management items. A theoretical model that depicted the influence of processes (job-match) and outcomes (work performance) on employer satisfaction with EWDs was supported. The second study analysed questionnaire ratings from 36 non-employers of EWDs. Findings indicated very similar responses between employers and non-employers of EWDs on experiences related to employer satisfaction with NDEs. Views about the relative importance of variable related to hiring and retaining a person with a disability suggested that generalising findings from the first study to all employers was reasonable. The third study analysed data from interviews with 50 employers and 40 DESPs; and questionnaire responses for 56 DESPs and 36 non-employers of EWDs. This study validated the importance of job-match to successful employment outcomes; suggesting DESPs were undervaluing their services to the employers. The study also showed that Bronfenbrenner’s Ecological Systems Theory provided a relevant framework with which to interpret complex information from different stakeholders, important to understanding employer satisfaction. In summary, employer satisfaction was shown to be a relative concept that varied with referent, and a developmental phenomenon that was influences by many factors operating and interacting at a number of ecological levels. Policies and practices to promote employer satisfaction with EWDs need co-ordinated approaches that recognise the influence of contexts internal and external to the workplace and the dynamic nature and interrelationships of characteristics within these contexts.

Assessing behaviour support plans for people with intellectual disability before and after the Victorian Disability Act 2006

Background : This study sought to elucidate the extent to which behaviour support plans for people with intellectual disability are inclusive of best practice criteria, with a comparison made prior to and following proclamation of the Disability Act (2006) in Victoria, Australia.

Method : This study used a data collection instrument developed by the researchers incorporating best practice criteria as identified in the review of literature and Victorian legislative requirements. The instrument was used to assess a sample of behaviour support plans.

Results : Best practice criteria are inadequately included in behaviour support plans with little difference between pre- and post-Act plans.

Conclusion : The results of this study indicate that disability support staff are ill equipped to undertake the complex assessments, planning, and implementation associated with behaviour support strategies, despite the legislative framework that guides and directs this intervention

Defining and measuring the outcomes of inclusive community for people with disability, their families and the communities with whom they engage

This paper explores the meaning of ‘inclusive community’ as understood by a major disability service provider in Victoria, Australia. Scope is a major non government agency with 1300 staff, a $50M annual budget and over 4500 clients. The recent adoption of a new Strategic plan for the organisation has focused significant attention on the priority area of building welcoming and inclusive communities. Given this mandate, the organisation has begun research to define and measure outcomes for people with a disability, their families, and the communities with whom they engage, as a result of increased community inclusion. This paper reviews literature on outcomes definition relevant to this task and suggests that outcome measures to date, especially within the field of disability, have offered a set of outcomes that are too limited in their aspiration and breadth. It has been the experience within Scope that people with a disability, including people with intellectual, multiple and complex disabilities, aspire to and experience outcomes across a far broader range of life domains than is currently captured in either existing disability outcome measures or in government policies that frame service delivery. As a result, the paper introduces an emerging outcomes framework which seeks to define outcomes across a range of citizenship domains.