People making choices: the support needs and preferences of people with psychosocial disability: project summary

The aim of this project was to improve understanding of the choices that people with psychosocial disability would make about support for priority life goals if they were offered individualised funding packages. This was timely given the inclusion of psychosocial disability in the National Disability Insurance Scheme (NDIS), which has been designed to enable Australians with disability the opportunity to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports (Commonwealth of Australia, 2013b).

Self-reported substance use and intervention experience of prisoners with intellectual disability

Background It has been increasingly recognised that many offenders with intellectual disability (ID) have substance use issues, yet surprisingly little is known about the treatment needs of this population.Method In order to explore pre-sentence patterns of substance use, the role of substance use in offending behaviour, and experience with substance treatment programs, interviews were conducted with 33 sentenced prisoners.Results The findings of this study identified hazardous and harmful rates of alcohol use and high rates of substance use among prisoners with ID. Most participants reported being intoxicated at the time of their offence. Participants experience of substance intervention programs varied. Although many reported a positive experience, others reported significant participation barriers.Conclusions This study supports the increasingly recognised link between substance use and offending behaviour among prisoners with ID and highlights the importance of tailored and coordinated treatment initiatives, both within corrections facilities and the community.

Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research

BACKGROUND: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. OBJECTIVE: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. METHOD: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. RESEARCH OUTCOMES: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. CONCLUSION: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.

Diabetes in people with an intellectual disability : a systematic review of prevalence, incidence and impact.

To establish the prevalence and incidence of Type 1 and Type 2 diabetes in people with an intellectual and developmental disability and determine their impact on health and well-being and to appraise the evidence available to inform good practice in diabetes management for people with intellectual and developmental disabilities.

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.

Adolescent victims with an intellectual disability : perceived credibility in cases of sexual abuse

The study aimed to assess perceptions of the credibility of adolescent victims with intellectual disability. Results revealed that victim and participant characteristics influenced perceptions of the credibility of the victim and verdict responses. Findings related to the level of ID, type of offence, perceptions of competency, honesty, suggestibility, and gender of victim and participant.

Transition staff discuss sex education and support for young men and women with intellectual and developmental disability

Background Young people with intellectual and developmental disability (IDD) get information, education, and support about social and sexual relationships from different sources. Staff are often involved in providing this education and support. We explored if and how this support is offered to young people transitioning to adulthood.Methods Focus groups were conducted with 17 staff from 3 transition services to illicit information about their experiences providing this education and support.Findings A key theme was that staff are “reluctant counsellors.” Although staff provided social and sexual education, they reported being underprepared and relied primarily on their own values as guidance. They did this in full recognition that transition services filled a social gap for participants, blurring the lines between education and social support.Conclusion Further research is needed to inform sexuality and relationship policy and practice during transition to adulthood, as this is a key learning and developmental time for young adults with IDD.

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.

Conditionally sexual : men and teenage boys with moderate to profound intellectual disability

This article presents qualitative research data about the sexuality of men and teenage boys with moderate to profound intellectual disability. Research findings pointed to a conditional construct of sexuality based within a biopsychosocial framework. The notion Conditionally Sexual represents the perceived limitations, within a rights-based discourse, of these men and teenage boys’ sexuality. The limitations to person-centred service delivery from a policy vacuum in the area of sexuality and intellectual disability represents a major challenge for paid staff. We suggest that a move toward better understanding how to support such a conditional sexual construct will assist the development of a healthy masculine sexuality for men and boys with intellectual disability.

Employer satisfaction, job-match and future hiring intentions for employees with a disability

This paper is based on survey responses from 656 employers who used disability employment services to employ someone with a disability. Relationships between employer satisfaction and employer perceptions of job-match and future hiring intentions toward people who have a disability are outlined and discussed. Employers' perceptions of the job-match process were found to be an important determinant of their perceptions of work performance and employer satisfaction. Comparative ratings on employer satisfaction for employees with and without a disability were seen as an important indicator of future hiring intentions toward people with a disability. Findings reported in this paper provide important information on which to base strategies for improving future employment outcomes for people who have a disability.

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.

Self advocates have the last say on friendship

This study reports the friendship experiences and aspirations of adults with intellectual disabilities. The findings of a larger study were reviewed by an expert group of self‐advocates with intellectual disability. The expert group confirmed some of the interpretation of the original data and expanded on issues. Friendship is established as an issue of concern among adults with intellectual disability. Consequently, policy‐makers and service providers need to be intentional about providing support for friendships. Participants asserted a positive self‐identity of being a person with intellectual disability and how this could be a basis for friendship. Also, people with intellectual disability demonstrated how they should be considered experts in their own life experience and how they can be effectively included in the formulation, implementation, analysis and review of research.†In memory of our dear friend Allison J. Dewing‐Moore, died 3 November 2005.

Organising inclusion work : key factors for success

This paper presents the findings of research conducted by Scope in 2007-2009. It proposes a way of categorising the dominant modes or orientations to inclusion work in the disability sector in Australia and identifies the barriers and enablers to it. The research engaged with seventeen ‘inclusion workers’ or managers in Victoria and Perth, Western Australia and sought examples of successful practice along with the ingredients of success, and outcomes of the work. Coincidently, the majority of examples provided related to inclusion work with people with intellectual disability, and a minority of these relating to people with severe intellectual disability. This data was analysed to identify key organisational factors required for successful inclusion work. Most importantly, respondents were also asked to identify the outcomes of inclusion work for individuals with a disability and their families, as well as for services, and for the communities with whom they engaged. The paper offers a way of conceptualising the breadth of inclusion work, including work focused on presence and participation, as well as the larger scale activities of social engineering or social change. The paper presents key ingredients for successful organisational approaches to such work.