Experiences of disability consumer-directed care users in Australia : results from a longitudinal qualitative study

The rapidly growing body of literature suggests that Consumer-directed Care (CDC) has the potential to empower consumers and improve the flexibility and quality of care. However, reports highlighting quality and risk concerns associated with CDC focusing on a longer time frame have been few. This paper presents the findings from a qualitative longitudinal evaluation of an Australian CDC programme. Focusing on the period between 2003 and 2008, it reports on the experiences of 12 families caring for a dependent family member. It is based on two external evaluations completed 6 and 36 months after enrolment, and one internal evaluation completed 48 months after enrolment. The findings were triangulated with internal memos, reports and minutes of meetings, as well as with the theoretical literature. The study demonstrates that CDC harbours considerable benefits for people with disabilities and their carers. However, the study also suggests that, over time, carers may experience an increased sense of isolation and lack of support as a result of their involvement in the CDC programme. The paper argues that the development of safeguards addressing these weaknesses is crucial for the sustainability of CDC programmes in contexts where risk cannot be simply transferred onto consumers.

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.

Pretend play and maternal scaffolding : comparisons of toddlers with advanced development, typical development, and hearing impairment

This study used measures of pretend play and maternal scaffolding to explore and compare the early development of deaf children, typically developing children, and children showing advanced intellectual development. Marked differences were found among the groups in both play development and characteristics of mother-child interactions. In particular, children who scored above 130 IQ at four years of age were found, as toddlers, to have demonstrated significantly advanced pretend play. In addition, the mothers of the high IQ children engaged in scaffolding behaviors involving higher stages of pretend transformations, verbal analogies and world links. The findings are discussed in relation to children's learning in Vygotsky's Zone of Proximal Development, as well as possible implications for future research on early gifted development.

'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.

Funding special education provision by means of discriminant function analysis

This thesis is concerned with the development of a funding mechanism, the Student Resource Index, which has been designed to resolve a number of difficulties which emerged following the introduction of integration or inclusion as an alternative means of providing educational support to students with disabilities in the Australian State of Victoria. Prior to 1984, the year in which the major integration or inclusion initiatives were introduced, the great majority of students with disabilities were educated in segregated special schools, however, by 1992 the integration initiatives had been successful in including within regular classes approximately half of the students in receipt of additional educational assistance on the basis of disability. The success of the integration program brought with it a number of administrative and financial problems which were the subject of three government enquiries. Central to these difficulties was the development of a dual system of special education provision. On one hand, additional resources were provided for the students attending segregated special schools by means of weighted student ratios, with one teacher being provided for each six students attending a special school. On the other hand, the requirements of individual students integrated into regular schools were assessed by school-based committees on the basis of their perceived extra educational needs. The major criticism of this dual system of special education funding was that it created inequities in the distribution of resources both between the systems and also within the systems. For example, three students with equivalent needs, one of whom attended a special school and two of whom attended different regular schools could each be funded at substantially differing levels. The solution to these inequities of funding was seen to be in the development of a needs based funding device which encompassed all students in receipt of additional disability related educational support. The Student Resource Index developed in this thesis is a set of behavioural descriptors designed to assess degree of additional educational need across a number of disability domains. These domains include hearing, vision, communication, health, co-ordination (manual and mobility), intellectual capacity and behaviour. The completed Student Resource Index provides a profile of the students’ needs across all of these domains and as such addresses the multiple nature of many disabling conditions. The Student Resource Index was validated in terms of its capacity to predict the ‘known’ membership or the type of special school which some 1200 students in the sample currently attended. The decision to use the existing special school populations as the criterion against which the Student Resource Index was validated was based on the premise that the differing resource levels of these schools had been historically determined by expert opinion, industrial negotiation and reference to other special education systems as the most reliable estimate of the enrolled students’ needs. When discriminant function analysis was applied to some 178 students attending one school for students with mild intellectual disability and one facility for students with moderate to severe intellectual disability the Student Resource Index was successful in predicting the student's known school in 92 percent of cases. An analysis of those students (8 percent) which the Student Resource Index had failed to predict their known school enrolment revealed that 13 students had, for a variety of reasons, been inappropriately placed in these settings. When these students were removed from the sample the predictive accuracy of the Student Resource Index was raised to 96 percent of the sample. By comparison the domains of the Vineland Adaptive Behaviour Scale accurately predicted known enrolments of 76 percent of the sample. By way of replication discriminant function analysis was then applied to the Student Resource Index profiles of 518 students attending Day Special Schools (Mild Intellectual Disability) and 287 students attending Special Developmental Schools (Moderate to Severe Intellectual Disability). In this case, the Student Resource Index profiles were successful in predicting the known enrolments of 85 percent of students. When a third group was added, 147 students attending Day Special Schools for students with physical disabilities, the Student Resource Index predicted known enrolments in 80 percent of cases. The addition of a fourth group of 116 students attending Day Special Schools (Hearing Impaired) to the discriminant analysis led to a small reduction in predictive accuracy from 80 percent to 78 percent of the sample. A final analysis which included students attending a School for the Deaf-Blind, a Hospital School and a Social and Behavioural Unit was successful in predicting known enrolments in 71 percent of the 1114 students in the sample. For reasons which are expanded upon within the thesis it was concluded that the Student Resource Index when used in conjunction with discriminant function analysis was capable of isolating four distinct groups on the basis of their additional educational needs. If the historically determined and varied funding levels provided to these groups, inherent in the cash equivalent of the staffing ratios of Day Special Schools (Mild Intellectual Disability), Special Development Schools (Moderate to Severe Intellectual Disability), Day Special Schools (Physical Disability) and Day Special Schools (Hearing Impairment) are accepted as reasonable reflections of these students’ needs these funding levels can be translated into funding bands. These funding bands can then be applied to students in segregated or inclusive placements. The thesis demonstrates that a new applicant for funding can be introduced into the existing data base and by the use of discriminant function analysis be allocated to one of the four groups. The analysis is in effect saying that this new student’s profile of educational needs has more in common with Group A than with the members of Groups B, C, or D. The student would then be funded at Group A level. It is immaterial from a funding point of view whether the student decides to attend a segregated or inclusive setting. The thesis then examines the impact of the introduction of Student Resource Index based funding upon the current funding of the special schools in one of the major metropolitan regions. Overall, such an initiative would lead to a reduction of 1.54 percent of the total funding accruing to the region’s special schools.

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

The effects of phonological and morphological training on speech perception scores and grammatical judgments in deaf and hard-of-hearing children

Seventeen primary school deaf and hard-of-hearing children were given two types of training for 9 weeks each. Phonological training involved practice of /s, z, t, d/ in word final position in monomorphemic words. Morphological training involved learning and practicing the rules for forming third-person singular, present tense, past tense, and plurals. The words used in the two training types were different (monomorphemic or polymorphemic) but both involved word final /s, z, t, d/. Grammatical judgments were tested before and after training using short sentences that were read aloud by the child (or by the presenter if the child was unable to read them). Perception was tested with 150 key words in sentences using the trained morphemes and phonemes in word final position. Grammatical judgments for sentences involving the trained morphemes improved significantly after each type of training. Both types of training needed to be completed before a significant improvement was found for speech perception scores. The results suggest that both phonological and morphological training are beneficial in improving speech perception and grammatical performance of deaf and hard-of-hearing children and that both types of training were required to obtain the maximum benefit.