Access to Sexual Health Services and Support for People with Intellectual and Developmental Disabilities: an Australian Cross-sector Survey.

Introduction: People with intellectual and developmental disabilities under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) have the right to access sexual health services including information, education, and support. Little is known about the capacity of sexual health professionals to provide these services. Methods: Using an observational research design, this study utilised a descriptive survey tool (PASH-Ext) that also encompassed a standardised measure, with a cross-sectional purposive sample of 52 Australian sexual health professionals. Data was collected in 2020. Results: Just over half of the participants reported having received training in their preservice education to work with people with intellectual and developmental disabilities, of these 60% held the view that people with intellectual and developmental disabilities would not feel embarrassed receiving sexual health information and support. Conclusion: The study found that training is both important to the professionals' preparedness to work with people with intellectual and developmental disabilities, and that these professionals advocate for the continuation of this training in pre-service courses and additional training in post service education for sexual health workers. Policy Implications: To progressively realise Article 25 of the UNCRPD signatory, countries need to ensure sexual health services are accessible to people with intellectual and developmental disabilities. This study recommends that sexual health policy addresses equity of access for people with intellectual and developmental disability by ensuring all staff are prepared and supported to provide these services.

Access and Accessibility in Domestic and Family Violence Services for Women With Disabilities: Widening the Lens.

Women with disabilities experiencing violence can face challenges accessing domestic and family violence (DFV) services. Our research explored how these services understood and operationalized access for women with disabilities. In this article, we use Levesque, Harris, and Russell's access framework to show how to be accessible to women with disabilities, and DFV services can widen the lens of access and accessibility to respond to women's own priorities. These centered around appropriateness, approachability, and acceptability. Addressing these broader issues of access in policy and practice alongside disability-specific needs can better align what services offer and what women need.

An integrated literature review of the current discourse around universal design in the built environment - is occupation the missing link?

PURPOSE: To synthesise current literature regarding applications of universal design (UD) to built environments that promote social participation, identify areas of agreement and areas requiring further attention and development. Occupations refer to personally meaningful activities, which people need, want or must do as part of their daily life. MATERIALS AND METHODS: Recently published literature (January 2011-December 2017) relevant to UD and built environments, and pertaining to any discipline or professional area, were identified via a systematic search of databases in the EbscoHOST platform. The person-environment-occupation (PEO) model was chosen as a theoretical framework for the review, which included a sample of 33 peer reviewed journal articles. RESULTS: The current discourse is driven more by description, discussion, and commentary than empirical approaches; although, a combination of quantitative, qualitative, and mixed methods approaches was employed. Much of the current discourse on UD and the built environment focuses on the person and the environment, with the occupations carried out in built environments and the interaction between these domains not referred to in much detail. CONCLUSIONS: Including occupations, social participation, multi- and trans-disciplinary collaboration, and multicultural perspectives in the ongoing discourse around UD would enable the concept to reach its full potential as a medium for social justice. Implications for Rehabilitation The universal design (UD) process must account for the occupations that people perform in the built environment. Multi-disciplinary research and development, using multiple methods, is the most appropriate approach to investigate the application of UD to the built environment. Key areas of contention within the current discourse include meaningful inclusion of non-professional stakeholders, tensions between embracing and eliminating diversity and how professional education should be delivered.

Experiences of LGBTIQA+ People with Disability in Healthcare and Community Services: Towards Embracing Multiple Identities.

Healthcare and disability support services are increasing their efforts towards inclusion and recognising the needs of different groups. This research project was conducted by academic and peer researchers (LGBTIQA+ people with disability) in Victoria, Australia using four focus groups with LGBTIQA+ people with disability. We report on two overarching themes relating to participants' experiences of accessing health services as LGBTIQA+ people with disability: difficulties in managing multiple identities and the impacts of community services and supports. Participants described having to repeatedly 'come out' in a range of ways and contexts as complex and layered processes in which it was difficult to present their full range of needs and experiences to services. We also found that the role of community in promoting a sense of belonging and resilience increased capacity to manage health service use and advocacy. Services and communities aiming to be inclusive to all have the opportunity to recognise and respond to the issues faced by LGBTIQA+ people with disability as a way to pay attention to how overt and subtle practices of discrimination continue to operate despite repeated attempts at or claims of being 'inclusive.' Our research suggests actual inclusive, accessible services can be achieved in part through policy and practice that actively responds to the specific needs of LGBTIQA+ people with disability, in addition to LGBTIQA+ education for disability services and disability and accessibility education for LGBTIQA+ focused services. As we do in this article, we argue that this work must be done by prioritising authentic participation of LGBTIQA+ people with disability in the services and research that is about them.

Evaluating Universal Design in Built Environments - A Scoping Project.

This project aimed to scope existing methods of evaluating the application of universal design to built environments and to explore relevant knowledge of key stakeholders, such as architects, access consultants and people who experience disability. The project commenced in 2017. Ethics approval was gained and a mixed methods approach was employed. Methods of data collection included electronic survey and in-depth interview. Early survey findings are reported in this paper. A descriptive approach was used to analyse quantitative data. A total of 157 survey responses were received from across Australia (83%) and internationally (16.6%). Preliminary findings indicate that most survey respondents (72%) had been involved in the process of applying universal design to the design of built environments. Although evaluating the application of universal design was rated as "extremely important" by 85% of respondents, only 36% had such experience. Of these, 74% had used specific tools for this purpose. Non-standardised checklists and access audits were the most frequently used and preferred tools. Overall, stakeholders perceived themselves to have 'some knowledge' on universal design theory and application. This project offers insight into how universal design is understood and applied to the design of built environments. Findings suggest that evaluation is less common than application and that there is a need to strengthen existing methods of evaluation to provide greater detail on universal design processes and outcomes.

A narrative review of the literature about people with intellectual disability who identify as lesbian, gay, bisexual, transgender, intersex or questioning.

This narrative review of the research literature presents a summary about the key issues facing people with intellectual disability (ID) who identify as lesbian, gay, bisexual, transgender, intersex or questioning (LGBTIQ). The aim of this review was to consolidate research of the topic; to identify whether any pilot studies reporting social/sexual/educational interventions had been published; and to offer some perspective on the type of future research required to better inform policy, practice and theory that may lead to better outcomes for people with ID who identify as LGBTIQ. Almost all of the research literature on the topic is either exploratory or descriptive which serves to outline the range of issues faced by people with ID who identify as LGBTIQ. Urgently needed as the next step, however, is a concerted effort to conduct a range of innovative educational and social interventions with collection of targeted and appropriate outcomes data.

Conceptualizing inclusive research with people with intellectual disability.

BACKGROUND: The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour. METHOD: A comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it. FINDING: Three approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed. CONCLUSIONS: A clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self-advocacy movement is identified as one of the conditions necessary for inclusive research to flourish. BACKGROUND: Organisations including government that fund research about people with an intellectual disability in the UK and Australia say it is important that people with an intellectual disability are involved in planning and doing research that is about them; this is called inclusive research. Some people have written about what they have done but not enough has been written and shared about the different ways of doing inclusive research. METHOD: The people who wrote this paper looked at all the literature about ways of doing inclusive research and reflected on the way they had worked with a group of self advocates in writing about their history. RESULTS: There are three main ways of doing inclusive research; (i) Where people with an intellectual disability give advice about what to do; (ii) Where people with an intellectual disability lead and control research (iii) Where people with and without intellectual disability work together as a group with different jobs based on their different interests and skills. CONCLUSIONS: In the past there has been an idea that there is only one way to do inclusive research. This paper talks about the advantages and disadvantages of different ways of doing inclusive research, and when you might choose one way rather than another.

A collaborative group method of inclusive research.

BACKGROUND: 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. METHOD: This study proposes one method of inclusive research, the 'collaborative group' approach. It examines the processes used to conduct a study involving academics and self-advocates, presenting findings derived from an inductive analysis of field note data, interview and meeting transcripts. RESULTS: Five components are identified: shared and distinct purposes of participants equally valued, shared involvement and distinct contributions equally valued, flexible, adapted research methods, working as a group with trusting relationships and dispersed power, and scaffolding for inclusion. CONCLUSIONS: This collaborative group method potentially results in better research than either academics or self-advocates could achieve alone and has multiple knowledge outcomes with differing accessibility and complexity. BACKGROUND: When people with an intellectual disability and researchers from universities or other organisations do research together it is called inclusive research. People have worked together on research for a long time but there are still some questions about why we should do it and the best way to do it. METHOD: This paper talks about one way of doing inclusive research that the people who wrote the paper call 'collaborative group approach'. They did a big project with a group of people with an intellectual disability and talked and thought a lot about what they were doing. What they found out. There are five parts to working this way; (i) Having some of the same and some different reasons for doing the research (ii) Doing some things together and doing some things apart (iii) Being able to change things as you go so people can do what they want to do and are good at. (iv) Knowing each other well and being able to work together equally. (v) Thinking about the way you work all the time to make sure people are doing what they are good at and what they want to do. CONCLUSION: If people work this way it might lead to better research and understanding about the lives of people with an intellectual disability.

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.

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.