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Introduction: Access to health information is a right for all people. Easy read information is one strategy used to make information accessible for people with intellectual disability. This research explored how easy read is used and the ways accessible information can address access barriers, with a focus on Australian mental health services. Methods: Semi-structured interviews were conducted across four sites to explore how easy read was used. Participants (n = 49) were easy read users, health practitioners and staff from services providing mental health care in New South Wales, Australia. An integrated health literacy framework was used to analyse data. Results: Most mental health staff did not use easy read or other accessible information, and did not consistently offer people with intellectual disability opportunities to understand, appraise and apply health information. This investigation confirmed the limited availability of accessible information resources, including easy read, and the importance of relationships of support when accessing health information. Conclusion: People with intellectual disability did not routinely have access to mental health information. Substantial change is required to address this disparity. Implications: Agency policy and processes require change to support staff practices that uphold the right to information. Inclusive practices that incorporate using easy read in health contexts, including mental health, are needed to facilitate change.

This paper explores tensions navigated by researchers and project leaders when involving people with disability as experts in co-design and in the core team. Part of an evaluation aiming to improve paid employment of people with intellectual disability is used to consider this work. Assemblage analysis of the data assisted in identifying a range of material and social conditions, flows, and factors that de- and re-territorialise power in the co-design process. The expertise of people with disability informed research design. Structural conditions of funding and institutional support were foundational to the co-design. These included accessible practices, core roles for people with disability and resolving ableist conditions. Power shifts were easily undermined by institutionalised norms that disrespected the co-design contributions. When people in decision-making positions and allies recognised the value of codesigning research, it was key to centring valuable knowledge in articulating key issues, methodology, and analysis. Points of interest: It is increasingly expected that people with disability will be involved as researchers and decision-makers in projects. This kind of co-design in research is very popular. When governments or organisations ask researchers to complete research quickly, people with disability are less likely to be involved in designing the research from the start. This reduces how much power they have as members of the research team. Our research found that people with and without disability needed to work together to resist when co-design work was not treated with respect by people or systems. Allies need to work to make co-design positions more secure. For example, people with disability need to be in decision-making positions before research proposals are developed. [ABSTRACT FROM AUTHOR]

Research into co-designers' experience of co-design processes is uncommon, despite expanding use of co-design to improve and innovate in healthcare. This study aimed to identify how an online co-design was experienced, how it achieved its outcomes and the implications for healthcare co-design. Eleven co-designers were interviewed about their participation in an online, lived experience co-led, co-design that aimed to improve the physical healthcare of mental health service users in primary care and mental health settings. Analysis of group and individual interviews and co-design documentation involved an initial inductive coding process, followed by a more focussed theoretical coding process and the application of an existing conceptual framework to test the analysis. Three themes were identified – generating knowledge, creating space and influencing change. Each theme was characterised by underlying interdependent tensions – individual and collective, stabilising and transforming, internal and external, which operated together to facilitate collaboration. Time was an essential resource for engaging these processes. Efforts to create the conditions for co-design in healthcare may be enhanced when attention and time is given to underlying interdependent tensions that interact to support knowledge co-creation, collaboration and change. [ABSTRACT FROM AUTHOR]

In recent policies, it is assumed that communities welcome the inclusion of young people with intellectual disability. However, little is known about perspectives of young people themselves. This article reports on research that sought to address this gap. Young people with intellectual disability living in three Australian small town communities participated in pictorial mapping and photo-rich methods to explore belonging and exclusion and links between these. Young people's feelings of comfort and safety with local spaces and people were important for their sense of belonging. Emplaced relationships with family and some friends were key to strong belonging, as were positive attachments to disability support workers and spaces. Social exclusion, either from particular places or more generally, was keenly felt. Young people's confidence, willingness to enter social spaces and relationships were magnified by ways that systems responded to their impairment, at worst fracturing their sense of feeling welcome and included.

Background: People with intellectual disability experience elevated rates of mental ill health. Yet they face barriers in accessing appropriate individualised mental health care. Further research is required to learn about the capability of the mental health workforce to facilitate access and participation in quality mental health care for this group. Methods: Thirty-three Australian intellectual disability mental health experts participated in four focus groups. The research team undertook thematic analysis applying a health care human rights framework known as the 3AQ Framework. Results: The participants identified multiple barriers to the delivery of quality mental health care. These included the lack of clear career pathways, education, clinical skills, clinical guidelines, and negative attitudes held by some mental health professionals. Conclusion: A comprehensive workforce development strategy is required to improve the capability of the mental health workforce to provide an available, accessible, acceptable and quality mental health services to people with intellectual disability.

The Disability Royal Commission (the Commission) investigated many issues, one of which was whether people with cognitive disabilities, including people with intellectual disabilities, faced systemic neglect in the Australian health system. Using a method of co-design with people with intellectual disabilities, we analysed the Commission's approach and recommendations about preventive health care. We identified how the Commission's recommendations can inform the achievement of the National Preventive Health Strategy (the Strategy) for people with intellectual disabilities. We found that a strength of the Commission's process was the multiple ways it inquired about the experience of accessing preventive health care. However, the inclusiveness of the invitations to participate in the Commission's work and the location of the public hearings were limitations for key stakeholders. Our analysis also noted that the Commission's public hearings focused on the supply side of healthcare access (health services) compared to the demand side of access (health users). This was a missed opportunity to learn from health users about their experiences. Two challenges to the implementation of the recommendations include the focus on cognitive disability instead of intellectual disability, and the focus on health care in general, rather than specifically on preventive health care. We also found that the Commission's recommendations mainly relate to the leadership, governance and funding elements in the Strategy, with a few actions relevant to prevention, partnerships, information, research, surveillance and preparedness. It is important that all the elements required to mobilise prevention systems are considered and actioned to achieve the Strategy. [ABSTRACT FROM AUTHOR]

People with disability are at heightened risk of violence, abuse, neglect and exploitation (VANE) with policy geared towards responding to and eliminating VANE harm. Yet not all harm experienced by people with disability is captured within the VANE harm. Many people also experience harm in everyday interactions that leave them feeling uncomfortable, devalued, disrespected, threatened or silenced. Our multi‐method study begins with the term 'everyday harm' to describe these subtle, difficult‐to‐define and easily overlooked experiences, with the proviso that a more appropriate vocabulary may emerge from subsequent fieldwork. This article presents the results of a policy review about the representation of everyday harm between people with disability and paid support workers in disability policies. Results show that everyday harm is acknowledged in some disability policies. However, this acknowledgement is neither consistent nor comprehensive and policies do not consider the cumulative impact of everyday harm nor the subjective experience of harm. This review suggests a gap in conceptualising this type of harm and having a vocabulary that people with disability, support workers and organisations can use to acknowledge, name and, ultimately, prevent this form of harm. Empirical research about their experience of everyday harm is needed to address this gap. [ABSTRACT FROM AUTHOR]

Background: Generalist mental health professionals are inadequately equipped to meet the rights of people with intellectual disability. A better understanding of the attributes of effective professionals may assist in the development of workforce capacity in this area. Methods: Twenty-eight family/support persons of people with intellectual disability participated in four focus groups. Thematic analysis was undertaken applying the Intellectual Disability Mental Health Core Competencies Framework. Results: Participants described attributes that aligned with current professional expectations such as working together and new attributes such as differentiating between behaviour and mental health. An unexpected finding was the need for professionals to be able to infer meaning by interpreting multiple sources of information. Participants also wanted professionals to acknowledge their professional limitations and seek professional support. Conclusion: Family/support persons identified a range of attributes of effective mental health professionals to support people with intellectual disability. Further research is necessary, particularly from the perspective of people with intellectual disability.

Disability policy in many countries encourages people to self-manage their disability support funds, yet few people do. This is also the case with Australia's National Disability Insurance Scheme (NDIS). Little is known about who chooses self-management and how they sustain it. This project explored the conditions and resources conducive to self-management in the interests of the person with disability. It used Katzman and Kinsella's typology of self-management work to analyse the current conditions that facilitate or hinder self-management. The research demonstrated unequal take-up of self-management, particularly by location and disability type. Often, a family member self-manages on behalf of the person with disability. Conditions and resources people needed to sustain self-management included prior experience and socio-economic advantage, or resources to fill these gaps. Implications are that resources such as advocates, peers, organisations or support coordination can help fill the gap between people with and without personal and social advantages. In many countries, people with disability have the option to self-manage their disability support funds. But many people do not choose to do so. We asked people who self-manage their funds or who self-manage on behalf of their family member with disability about how they do it and what helps them to make it successful. Their experiences show that self-managing is easier if they have money, education and prior knowledge about managing. People without these advantages can also self-manage. They may need support from peers, organisations, advocates or support coordinators. [ABSTRACT FROM AUTHOR]

Within growing marketisation of publicly funded services, the internet has provided new opportunities for marketing, delivery, and coordination of those services. Using web scraping and hyperlink network analysis techniques, this paper examines the ways in which organisations operating in Australia's evolving National Disability Insurance Scheme (NDIS) system inter-connect online. Social media plays the most important role in the online network. Government agencies also play a central role, with many disability service organisations linking their web users to them. Government agency websites do not hyperlink to disability service providers, suggesting that governments do not see their role as assisting access to such services. Advocacy and peak disability organisations are important in online connections between the websites of government and service organisations. Innovative uses of the internet for online brokerage of disability services are evident. The implications of these findings for service delivery are discussed. [ABSTRACT FROM AUTHOR]

Traineeships have been proven to be beneficial vocational pathways for people with intellectual disability however to date the on-the-job training provision associated with traineeships has not been well documented. This study describes components of on-the-job training provided to eight people, most with intellectual disability undergoing traineeships for 12 months in four aged care services. Sheri et al.'s (2019) framework for mentors during training was used to examine the findings. Challenges in the traineeships were common to most new staff, such as developing confidence, recognising the urgency of some tasks, and time to learn how to support aged-care residents. The findings highlighted on-the-job training that was individualised, incorporating a variety of approaches was most beneficial to the trainees. Traineeships for people with intellectual disability require support from both the trainee and mentors. This support is essential to develop skills and ensure positive workplace attitudes. [ABSTRACT FROM AUTHOR]

The disparity of access to suitable social services for people from culturally diverse backgrounds is receiving increased attention. Coproduction between service users and providers has the potential as an approach to improve the cultural responsiveness of social services. What remains unknown is how social service organizations can facilitate and support coproduction with people from culturally diverse backgrounds. This article examines how three disability support organizations in Australia worked with peer support groups run by people with disability and their families from Chinese background to improve the organizations' service provision. We collected qualitative data through observations of activities in the groups and semistructured interviews with group members and organization staff. We found that organizing peer support groups facilitated knowledge exchange between people from culturally diverse backgrounds and organizations to inform practice development. Five contributors to the knowledge exchange were as follows: (1) assigning staff responsibility for exchange and trust with the group; (2) encouraging the group to challenge practice and cultural norms; (3) identifying and supporting the capacity of peer facilitators; (4) fostering trust within the group; and (5) collaborating with other organizations. Cultural responsiveness means incorporating people's cultural preferences in support provision and addressing the negative influences of cultural norms on people. Highlights: Organizations can coproduce quality services by working with service‐user‐led peer support groups.Managerial and community leadership building for peer facilitators ensures sustainable coproduction.Multicultural peer support groups should be encouraged to address negative cultural norms.Culturally responsive services reflect people's cultural preferences and address negative norms. [ABSTRACT FROM AUTHOR]

Introduction: Mental health professionals have reported that they have limited knowledge, skills, and confidence in the area of intellectual disability mental health. This article aims to learn from the experiences of people with intellectual disability about the attributes that may assist mainstream mental health professionals to provide them with a quality mental health service. Methods: Six people with intellectual disability participated in an interview or focus group. Thematic analysis was undertaken applying the Intellectual Disability Mental Health Core Competencies Framework. Results: The findings supported previous research for the need for mental health professionals to be adaptable, able to communicate, and work with a person's support network. The study reinforced the need for professionals to undertake professional development in the area but also suggested that people with intellectual disability be included as educators and as peer workers. New attributes were identified, including the need for mental health professionals to be able to build rapport and trust through demonstrating their experience and respect for working with people with intellectual disability, and their ability to understand trauma and how it may influence mental health needs. Conclusions: The attributes identified in the study could be used to inform an intellectual disability mental health workforce development framework.

Background: It is well established that people with an intellectual disability have high rates of mental health problems, yet rates of uptake of services do not match need. Aim: To identify the current literature pertaining to the barriers and facilitators to access to mental health services for people with an intellectual disability. Method: A systematic search identified English-language articles that addressed barriers or enablers to access, mental health services, and intellectual disability from 2005 to 2016. Results were synthesized according to Gulliford et al.'s four dimensions of access: availability, utilization, relevance and effectiveness, and equity. Results: Barriers and enablers were identified across all the dimensions. Organizational barriers, lack of services, and poor-quality services related to deficits in knowledge were among the barriers discussed in the literature. Facilitators included emphasis on interagency collaboration, and training and education. Substantial gaps were also identified, particularly in relation to the lived experience of these barriers. Conclusions: Further research and evaluation across all aspects of access to mental health care for people with an intellectual disability is needed.

Background: People with intellectual disability experience high rates of mental ill health but multiple barriers to access to quality mental health care. One significant barrier to access is a generalist mental health workforce that lacks capacity, and consensus on what constitutes core workforce competencies in this area. As such, the first step in developing a comprehensive strategy that addresses these barriers is to define the core mental health workforce attributes. Methods: Thirty-six intellectual disability mental health experts from across Australia participated in a modified online Delphi which aimed to reach consensus on the core attributes required of the generalist mental health workforce. At the end of each Delphi round, descriptive analyses and thematic analyses were completed. Results: Consensus was reached among the participants for 102 attributes across 14 clinical domains. The results highlighted specific attributes in all areas of clinical practice, especially for communication (e.g., utilizes assistive communication technology), assessment (e.g., assess contributing factors to behaviours) and intervention (e.g., uses integrative interventions). Conclusion: A comprehensive strategy is required to facilitate the generalist mental health workforce to obtain these attributes.

Inclusive research is an increasing expectation to value and include people's voice in research and evaluations intended to benefit them. The active participation of people with communication support needs can be difficult due to the practical constraints of evaluations. One technique is to engage with workers who are familiar with the person, but this introduces risks, such as substituting voice and conflict of interests. We examine the effectiveness of this technique in ethnographic interviews by applying Nind's framework of core ideas in inclusive research (disrupting hierarchy; maximising participation and competence; enhancing authenticity; empowerment; accessibility, authorship and readership; and ethical considerations) to an evaluation of Australian disability services. We found that where support workers had a trusted relationship with the person, they could help them to choose to participate, consent and communicate their views. Disrespectful relationships introduced ethical risks during and after the interviews, which needed to be anticipated and safeguarded against.