A preliminary investigation of the utility of the "Behavior support plan quality evaluation guide II" for use in Australia

Background The quality of behaviour support plans (BSPs) can be an important influence on the quality of the support provided to people with disability who show challenging behaviours. The Behavior Support Plan Quality Evaluation Guide II (BSP-QE II) is one tool that may be useful in assessing the quality of behaviour support plans. It has previously been used to assess BSPs to support children in schools in the USA. In this preliminary study, we examined the utility of the BSP-QE II for assessing behaviour support plans designed for adults with an intellectual disability in community support services in Australia.

Method  Experienced practitioners were surveyed concerning the relevance of BSP-QE II components to the evaluation of BSPs in Australia, and an audit was conducted of randomly selected BSPs submitted as a statutory requirement to the Office of the Senior Practitioner.

Results  The BSP-QE II showed evidence of acceptable construct validity and interrater reliability. There was evidence of a need for substantial improvement in the quality of BSPs, consistent with previous findings conducted using other audit tools.

Conclusions The findings support the utility of the BSP-QE II, to inform and evaluate service planning in supporting adults with intellectual disability who show challenging behaviour.

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.

Picture my future image-assisted goal exploration

Plain English Summary
• Some people with disability find pictures help them to plan for their future.
• Picture My Future is a project run by Deakin University.
• It supported 29 people with a disability to use photos and pictures to tell others about what they like and what they want.

A metasynthesis of patient-provider communication in hospital for patients with severe communication disabilities: informing new translational research

Poor patient-provider communication in hospital continues to be cited as a possible causal factor in preventable adverse events for patients with severe communication disabilities. Yet to date there are no reports of empirical interventions that investigate or demonstrate an improvement in communication in hospital for these patients. The aim of this review was to synthesize the findings of research into communication in hospital for people with severe communication disabilities arising from lifelong and acquired stable conditions including cerebral palsy, autism, intellectual disability, aphasia following stroke, but excluding progressive conditions and those solely related to sensory impairments of hearing or vision. Results revealed six core strategies suggested to improve communication in hospital: (a) develop services, systems, and policies that support improved communication, (b) devote enough time to communication, (c) ensure adequate access to communication tools (nurse call systems and communication aids), (d) access personally held written health information, (e) collaborate effectively with carers, spouses, and parents, and (f) increase the communicative competence of hospital staff. Currently there are no reports that trial or validate any of these strategies specifically in hospital settings. Observational and evaluative research is needed to investigate the ecological validity of strategies proposed to improve communication.

"I'm in their shoes": Experiences of peer educators in sexuality and relationship education

Background: Sexuality and relationship education for adults with an intellectual disability has failed to include them in roles other than as learners. This paper reports findings from a study of the experiences of peer educators with an intellectual disability who co-facilitated a respectful relationships education program. Method: Qualitative data were collected about the experiences of 16 peer educators through in-depth interviews and observations of their work in delivering the program. These data were thematically analysed. Findings: Peer educators reported that peer education gave them a sense of empowerment, positioned them as credible sources of information about relationships, enabled them to help others, and gave them an opportunity to learn new knowledge about respectful relationships, community resources and supports, and new skills. Conclusions: This study presents an alternative approach to relationship education that involves people with an intellectual disability as peer educators and that benefits these people. © 2014 © 2014 Australasian Society for Intellectual Disability, Inc.

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.

Transition to retirement and participation in mainstream community groups using active mentoring: a feasibility and outcomes evaluation with a matched comparison group

BACKGROUND: This paper reports on the feasibility and outcomes of a transition to retirement programme for older adults with disability. Without activities and social inclusion, retirees with disability are likely to face inactivity, isolation and loneliness. METHODS: Matched intervention and comparison groups each consisted of 29 older individuals with disability. There were 42 men and 16 women with a mean age of 55.6 years While attending their individual mainstream community group 1 day per week, intervention group participants received support from community group members trained as mentors. We assessed participants' loneliness, social satisfaction, depression, life events, quality of life, community participation, social contacts, and work hours before and 6 months after joining a community group. RESULTS: Twenty-five (86%) of the intervention group attended their community group weekly for at least 6 months. They increased their community participation, made an average of four new social contacts and decreased their work hours. Intervention participants were more socially satisfied post-intervention than comparison group members. CONCLUSIONS: The results demonstrate that participation in mainstream community groups with support from trained mentors is a viable option for developing a retirement lifestyle for older individuals with disability.

The right to supported decision-making for people rarely heard

 This thesis explored supported decision-making for people with severe or profound intellectual disability. The findings provide guidance to supporters and policy makers to assist people with severe or profound intellectual disability to lead maximally autonomous lives, a clear obligation of Australia under the Convention on the Rights of Persons with Disabilities.