Researching belonging in the context of research with people with intellectual disabilities: A systematic review of inclusive approaches.

BACKGROUND: In disability studies belonging is emerging as a promising area of study. Inclusive research, based as it is on lived experience perspectives, is likely to provide salient insights into belonging in the lives of people with intellectual disabilities. METHOD: A systematic review utilising four databases and five leading journals in the field of intellectual disabilities was used. Content analysis and a deductive synthesis of the extracted data was undertaken. RESULTS: A high level of confluence was found between the findings of the included studies and key themes of belonging identified in the wider literature. Beyond this, studies utilising inclusive research approaches have contributed novel findings about belonging in the lives of people with intellectual disabilities. CONCLUSIONS: Inclusive research approaches to belonging may provide innovative and responsive frameworks to support people to develop a sense of being connected and "at home" in themselves and in their communities.

Impact of post-release community mental health and disability support on reincarceration for prisoners with intellectual disability and serious mental illness in NSW, Australia.

BACKGROUND: Prisoners with an intellectual disability are overrepresented in custody and more likely to reoffend and be reincarcerated compared with the general prison population. Although prisoners with intellectual disability have many of the same risk factors for recidivism as the general prison population, the high rates of mental illness experienced by this group are key drivers of recidivism. AIMS: We aimed to assess the impact of provision of post-release disability and community mental health support on rates of reincarceration in a cohort with identified intellectual disability and serious mental illness diagnosis. METHOD: We conducted a historical cohort study using linked administrative data-sets, including data on hospital admissions, community mental health, disability support and corrections custody in New South Wales, Australia (n = 484). To assess the time to return to adult custody, we used survival analysis on multiple failure-time data. RESULTS: Over the median follow-up period of 7.4 years, 73.7% (357) received community mental health support, 19.8% (96) received disability support and 18.6% (85) received a combination of supports during a post-release period from prison. Lower hazards of reincarceration in a post-release period were associated with receipt of community mental health support (hazard ratio [HR] = 0.58, CI 0.49-0.69, P < 0.001), or a combination of community mental health and disability support (HR = 0.46, CI 0.34-0.61, P < 0.001). CONCLUSIONS: High rates of reincarceration for prisoners with intellectual disability and history of serious mental illness may be modifiable by provision of appropriate mental health and disability supports.

Transcending the Professional-Client Divide: Supporting Young People with Complex Support Needs Through Transitions.

Young people with complex support needs frequently experience multiple intersecting forms of disadvantage including experiences of violence, abuse and neglect, housing instability and homelessness, problematic substance use, exclusion from education, and contact with the criminal justice system. Many of these young people have mental health, cognitive disability and/or other health issues that also impact on their lives. These young people need to navigate multiple, diverse, and often difficult transitions between services, adding to the existing chaos in their lives. This article explores the experiences of young people with complex support needs in transition, specifically young people's viewpoints and experiences of supports they receive from paid professionals. This qualitative study used body mapping research methods and in-depth interviews with 38 young people aged 16 to 26 years in three Australian states. Helpful and trusting paid relationships could serve as an anchor to young people during complex transitions and other highly turbulent life periods. These relationships were contingent on a deep and non-judgmental knowing of the young person, contributed constructive outcomes and stability in young people's lives, and for some young people, had 'life-saving' effects. These findings present opportunities and challenges for policymakers and practitioners to balance the tensions between authentic relationship-based work with young people and risk-averse, economically-driven imperatives in contemporary youth service provision.

Health and wellbeing of people with intellectual disability in New South Wales, Australia: a data linkage cohort.

PURPOSE: People with intellectual disability (ID) experience high rates of physical and mental health problems, while access to appropriate healthcare is often poor. This cohort was established to develop an epidemiological profile related to the health, health service use, disability services, mortality and corrective services records of people with ID. PARTICIPANTS: The cohort contains 92 542 people with ID (40% females) with a median age of 23 years (IQR: 12-43 years) and 2 004 475 people with a neuropsychiatric or developmental disorder diagnosis (50% females) with a median age of 51 years (IQR: 29-73 years) from New South Wales, Australia. The whole sample contains records for 2 097 017 individuals with most data sets spanning financial years 1 July 2001 to 30 June 2016. A wide range of data from linked population data sets are included in the areas of disability, health, corrective services and targeted specialist support services in public schools, Public Guardian and Ombudsman services. FINDINGS TO DATE: This study includes one of the largest cohorts of people with ID internationally. Our data have shown that the presence of ID is significantly associated with emergency department presentations and psychiatric readmissions after the first psychiatric admission based on a subcohort of people with a psychiatric admission. Adults with ID experience premature mortality and over-representation of potentially avoidable deaths compared with the general population. FUTURE PLANS: Within the health service system, we will examine different components, that is, inpatient, emergency adult services, children and younger people services and costs associated with healthcare as well as mortality, cause and predictors of death. The neuropsychiatric and developmental disorders comparison cohort allows comparisons of the physical health, mental health and service use profiles of people with ID and those with other neuropsychiatric disorders.

'I don't feel like I'm in this on my own': Peer support for mothers of children with intellectual disability and challenging behaviour.

This article reports on the peer support experiences of mothers with a son or daughter with intellectual disability and challenging behaviour. Engagement in parent peer support programs can improve family quality of life and may have multifaceted benefits at the interpersonal, intra-individual self-change and sociopolitical levels. Thirteen mothers were interviewed about their experiences of participating in a parent peer support program. Thematic analysis focused on the process elements of the program that contributed to its effectiveness in providing support to parents. There were three process-related themes: the role of a paid coordinator, diversity of engagement strategies and matching of peer support partners. Mothers appreciated the opportunities provided to engage in a range of strategies tailored to individual preferences, time and capacity constraints, supported by the paid coordinator. One-to-one peer support proved difficult to sustain given the challenges mothers faced in their day-to-day lives.

"Living the life I want": A framework for planning engagement with people with intellectual disability and complex support needs.

BACKGROUND: Self-determination involves autonomy, agency, choice and control. This study investigated how these aspects of self-determination relate to engaging people with intellectual disability and complex support needs in setting goals and making plans. METHOD: Body mapping was used to understand the planning experiences of 30 adults with intellectual disability and complex support needs. Each participant created two body maps using a guided group-based process. Visual and text data were thematically analysed and a framework for planning engagement developed. RESULTS: The framework identifies the centrality of having a well-developed sense of self which includes insight, motivation and agency, and which is shaped by contextual barriers and facilitators and influenced by helpful and unhelpful support. CONCLUSIONS: A well-developed sense of self and ability to harness resources and people is fundamental to the ability of individuals with intellectual disability and complex support needs articulating goals, identifying aspirations, and attaining valued outcomes.

Unpacking the complexity of planning with persons with cognitive disability and complex support needs.

BACKGROUND: Planners will engage with people with cognitive disability and complex support needs in the Australian National Disability Insurance Scheme, but the specific skills needed to build sustainable plans with this group are not yet known. METHOD: A qualitative study was conducted to explore the barriers and facilitators to planning with people with cognitive disability and complex support needs. Focus groups were held with 99 planning practitioners across metropolitan and regional locations in New South Wales, Australia. RESULTS: Thematic analysis showed planners need to build a partnership based on mutual trust and respect with a person with complex support needs and harness a range of skills to respond to individual support needs, learning capacity, systemic hurdles and life challenges. CONCLUSIONS: Planner skills can be used to address barriers to planning for people with cognitive disability and complex support needs. Gaining skills took professional support and personal commitment.

Cohort profile: a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia.

PURPOSE: People with intellectual disability are a minority group who experience poorer physical and mental health than the general population and have difficulty accessing healthcare services. There is lack of knowledge about healthcare service needs and gaps experienced by people with intellectual disability. This study aims to interrogate a large linked administrative data set containing hospital admissions, presentations to emergency departments (ED) and mortality data to provide evidence to inform the development of improved health and mental health services for this population. PARTICIPANTS: A retrospective cohort of people with intellectual disability (n=51 452) from New South Wales (NSW), Australia, to explore health and mental health profiles, mortality, pattern of health service use and associated costs between 2005 and 2013. The cohort is drawn from: the Disability Services Minimum Data Set; Admitted Patients Data Collection; Emergency Department Data Collection, Australian Bureau of Statistics Death Registry and Registry of Births, Deaths and Marriages. Mental health service usage among those with intellectual disability will be compared to a cohort of people who used mental health services (n=1 073 139) and service usage other than for mental health will be compared with published data from the general population. FINDINGS TO DATE: The median age of the cohort was 24 at the time of the last hospital admission and 21 at the last ED presentation. The cohort has a higher proportion of men than women and accounts for 0.6% of the NSW population in 2011. Over 70% had up to 5 ED presentations and hospitalisations between 2005 and 2012. A high proportion of people with intellectual disability live in the most disadvantaged neighbourhoods. FUTURE PLANS: Results will be used to inform the development of more responsive healthcare, including improved interactions between health, social and disability supports. More generally, the results will assist the development of more inclusive policy frameworks for people with intellectual disability.

Mental health at the intersections: the impact of complex needs on police contact and custody for Indigenous Australian men.

Indigenous Australians experience significant social risk, vulnerability and disadvantage. Nowhere is this more starkly demonstrated than in the levels of contact that Indigenous Australians have with the criminal justice system, particularly the police. Utilizing a linked dataset of extant criminal justice, human and health service administrative data in New South Wales (NSW) Australia, this paper explores patterns of police contact and custody for a cohort of Indigenous males with complex needs. Four significant factors are identified that alone or in combination appear to impact on the frequency with which these men experience police contact and custody, including young age at first police contact, experiencing out of home care as a child, alcohol misuse, and limited locational mobility. Whilst it might be expected that the presence of mental ill-health and/or cognitive disability would be a key predictor of the frequency and intensity of police contact and custody, the findings suggest rather that the presence of multiple disadvantages beginning in the early years and compounding throughout individuals' lives, in which mental illness may or may not be a factor, is more significant than the presence of any one diagnosis in precipitating police contact and custody for this group.