Coproduction with peer support groups: A new approach to culturally responsive social services.

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.

Access to general practice for preventive health care for people who experience severe mental illness in Sydney, Australia: a qualitative study.

BACKGROUND: People with lived experience of severe mental illness (PWLE) live around 20years less than the general population. Most deaths are due to preventable health conditions. Improved access to high-quality preventive health care could help reduce this health inequity. This study aimed to answer the question: What helps PWLE access preventive care from their GP to prevent long-term physical conditions? METHODS: Qualitative interviews (n=10) and a focus group (n=10 participants) were conducted with PWLE who accessed a community mental health service and their carers (n=5). An asset-based framework was used to explore what helps participants access and engage with a GP. A conceptual framework of access to care guided data collection and analysis. Member checking was conducted with PWLE, service providers and other stakeholders. A lived experience researcher was involved in all stages of the study. RESULTS: PWLE and their carers identified multiple challenges to accessing high-quality preventive care, including the impacts of their mental illness, cognitive capacity, experiences of discrimination and low income. Some GPs facilitated access and communication. Key facilitators to access were support people and affordable preventive care. CONCLUSION: GPs can play an important role in facilitating access and communication with PWLE but need support to do so, particularly in the context of current demands in the Australian health system. Support workers, carers and mental health services are key assets in supporting PWLE and facilitating communication between PWLE and GPs. GP capacity building and system changes are needed to strengthen primary care's responsiveness to PWLE and ability to engage in collaborative/shared care.

How do Australian mental health services use easy read to make information accessible for people with intellectual disability?

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.

Struggle for recognition, rights, and redistribution: Understanding the identity of parents of children with autism spectrum disorder in China.

Introduction: The number of children diagnosed with autism spectrum disorders (ASD) worldwide has increased rapidly in the past decade and China is no exception. Yet the identity development of Chinese parents of children with ASD is little understood. This study employed an ethics of care perspective to explore the identity of parents of children with ASD as shaped in their social-cultural context in mainland China. Methods: Qualitatively driven mixed-method design was adopted. Qualitative data about their experiences were obtained from in-depth interviews with 20 parents from 17 families of children with ASD in Beijing and participant observation of 9 participants' daily parenting experience. Results: A complex and dynamic parenting identity was revealed. With limited recognition within and external to the family, parents experienced constant challenges toward their sense of self. The parents used strategies to assert their rights as carers and develop positive self-perceptions. Yet because of the unjust distribution of care work within families and with the state, the parents retained a sense of insecurity throughout the process of parenting. The parents' sense of inferiority due to devaluing children with disabilities was accentuated by traditional Chinese cultural values about good parenting. They were intensely worried about the lack of policy for support as they and their children grew older. Discussion: The findings reinforce the need for recognition of parents' dignity, capacity, and efforts in caring.

How can coproduction help to deliver culturally responsive disability support? A case study from Australia.

How to improve access and quality of social services to respond to cultural diversity is receiving increased attention. Yet no approach to cultural responsiveness has been widely accepted. Coproduction has been championed in many service fields for better service outcomes and has the potential to inform practices for cultural responsiveness. This study explored how coproduction can be used to deliver culturally responsive social services. We conducted a qualitative case study and examined how an Australian disability service organisation operated a programme to improve cultural responsiveness with Australian Chinese people with disability and their families. The findings suggested that coproduction enabled the organisation to identify that the people with disability and their families considered services were culturally responsive when the staff were competent and committed to person-centred services. The coproduction contributed to continuous improvement of the services and revealed the qualities that were valued by the Australian Chinese service users. This study enriches the knowledge on coproduction by demonstrating the influence of the process of coproduction on outcomes for service users and providers. The study also contributes to the knowledge on cultural responsiveness by highlighting the elements of culturally responsive services valued by the service users. Coproduction could be more widely used for service development given its capacity to identify and respond to service needs. Practical implications for culturally responsive social services are that workforce training could focus on the principles of person-centred services and skills for working effectively with people from culturally diverse backgrounds.

What place is there for shared housing with individualized disability support?

BACKGROUND: Individualized funding of disability support services has implications for people's choices about when to share their home. This paper examines how people with disabilities made choices about who to live with and the factors influencing these choices. METHODS: This paper discusses data from interviews with 30 people with mostly intellectual disabilities using individualized support services, 21 interviews with family members, four interviews with service managers, and a focus group with five support workers. The data come from a large evaluation of individualized housing support programs in New South Wales, Australia. RESULTS: Only some people had the opportunity to choose whether to share and with whom. Their choices were constrained by the range of housing options and their limited experience of them, even when they had support to make choices about shared housing or living alone. In some cases, the choices reflected a conceptualization of people with disabilities as different to other citizens in their rights and expectations about their social arrangements. CONCLUSION: The results have implications for information sharing, housing stock, and the need to challenge the positioning of people with disabilities relative to other people regarding choices about where and with whom to live. Implications for rehabilitation Many people preferred not to live alone, so as to improve their economic and social circumstances, and their choice and control. The choices about shared housing that many people and their supporters made were constrained by their limited experience of housing options or their familiarity with the range of choices made by other people with disabilities. Being able to draw on the material, social, and information resources of family made a big difference to their housing choices. It raises questions for policy implementation about whether individualized support may lock some people into shared housing arrangements by failing to include housing costs in the individual package.

Belonging and exclusion in the lives of young people with intellectual disability in small town communities.

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.

What makes generalist mental health professionals effective when working with people with an intellectual disability? A family member and support person perspective.

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.

Establishing core mental health workforce attributes for the effective mental health care of people with an intellectual disability and co-occurring mental ill health.

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.

Reducing hospitalisation among people living with severe mental illness.

Objective People with severe mental illness have high rates of hospitalisation. The present study examined the role that permanent housing and recovery-oriented support can play in reducing the number and length of psychiatric hospital admissions for people with severe mental illness. Methods The study examined de-identified, individual-level health records of 197 people involved in the New South Wales Mental Health Housing and Accommodation Support Initiative (HASI) to compare changes in hospitalisation over a continuous 4-year period. Results On average, HASI consumers experienced significant reductions in the number of psychiatric hospital admissions and length of stay after entering the HASI program, and these reductions were sustained over the first 2 years in HASI. Male consumers and consumers under 45 years of age experienced the largest reductions in the number and length of hospital admissions. Conclusions The findings of the present study add support to the hypothesis that supported housing and recovery-oriented support can be effective approaches to reducing hospital admissions for people with chronic mental illness, and that these changes can be sustained over time. What is known about this topic? People living with severe mental illness are heavy users of health and hospitalisation services. Research into the effects of partnership programs on preventing unnecessary admissions is limited because of short periods of comparison and small sample sizes. What does this paper add? The present study extends previous research by analysing de-identified individual-level health records over a continuous 4-year period and showing that reductions in hospitalisation among people with severe mental illness can be sustained over time. What are the implications for practitioners? These findings provide further evidence that community-based recovery-oriented supported housing programs can assist consumers to manage their mental health and avoid hospital admissions. Although the provision of recovery-oriented community services requires an investment in community mental health, the reduction in consumers' use of hospital services makes this investment worthwhile.

Access to health and therapy services for families of children with disabilities in China.

PURPOSE: China has more than five million children with disabilities. According to national statistics, most of them (63%) do not receive the health and therapy services they need, which threatens their lives, wellbeing and opportunities in adult life. METHOD: The article applies mixed methods (secondary data analysis and case study interviews) to analyse the efforts of families of children with disabilities to obtain health and therapy services to understand why most children do not receive the support they need. RESULTS: The findings are that reasons include poor information, shortage of services and affordability. While these reasons are common across China, the local context, such as resources and social policy implementation, affect the degree to which families obtain the support they need. CONCLUSIONS: These circumstances will not change until local communities and government policies at all levels prioritise policy implementation to fulfil the rights of children with disabilities in China. Implications for Rehabilitation Most children with disabilities in China do not receive the health and therapy support they need. Access to support is hampered by poor information, shortage of services and affordability, which are accentuated by local resources and local policy implementation. Central and provincial government resource allocation and local government policy commitment to implementation are critical to children receiving the support they need in their local communities.

How can non-clinical case management complement clinical support for people with chronic mental illness residing in the community?

The recovery of people with chronic mental illness who reside in the community requires integrated support services. Yet evidence of poor collaboration in the mental health system abounds and there is little understanding of how non-clinical case managers can work effectively with clinical services. This article analyses an example from the mental health Housing and Accommodation Support Initiative in Australia. Using interviews (42 consumers, family members and mental health workers) and consumer care plans (20), the article explores how clinical and non-clinical case managers worked together in consumer care planning and examines the perceived influence of support. The research found they worked effectively in care planning when the planning was consumer-driven; there was active participation from consumers, non-clinical and clinical case managers; and when planning was treated as a process, with incremental goals, reflective practice, as well as shared understanding and commitment to the collaboration.

Support as a complement, intrusion and right--evidence from ageing and disability support service users in Sweden and Australia.

How service users conceptualise their personal support services is under researched, even though this understanding is important for responsive policy development and service implementation. This paper tests the proposition that service users understand formal support in three ways: support is a complement to their other arrangements, an intrusion into their personal life and a right. These three concepts were identified using discourse analysis in a Swedish study of older people wanting in-home support services. To test generalisability of these concepts, they were applied to data from an Australian study of people using disability personal support. The analysis found that the three concepts were core to people's views of their support, although the construction of the concepts differed in the two countries. Service users in Sweden asserted their right to services more forcefully than those in Australia, and they had higher expectations that their support needs would be met. These differences reflect the impact of each country's social policy environment on service users' expectations. The analysis suggests that service users and their families want to control their formal support arrangements to complement their informal care and their life preferences and to minimise the intrusive aspects of formal support. The findings imply that the three concepts have utility for theorising service users' perspectives, informing policy and developing implementation strategies which enhance peoples' quality of life.