RESUMEN
BACKGROUND: For people with disabilities to live a good life, it is essential that funded research in health and social care addresses their interests, meets their needs, and fills gaps in our understanding of the impact that services, systems, and policies may have on them. Decisions about research funding should be based on an understanding of the research priorities of people with disabilities, their supporters and allies, disability researchers, service providers, and policy makers working in the field. OBJECTIVE: The aim of this protocol is to describe the research design and methods of a large-scale, disability research agenda-setting exercise conducted in 2021 in Australia. METHODS: The research agenda-setting exercise involves 3 integrated phases of work. In the first phase, a previous audit of disability research in Australia is updated to understand previous research and continuing gaps in the research. Building on this, the second phase involves consultation with stakeholders-people with disabilities and their supporters and family members, the disability workforce, and people working within services and connected sectors (eg, aging, employment, education, and housing), academia, and public policy. Data for the second phase will be gathered as follows: a national web-based survey; a consultation process undertaken through the government and nongovernment sector; and targeted consultation with Aboriginal and Torres Strait Islander people, children with disabilities and their families, people with cognitive disability, and people with complex communication needs. The third phase involves a web-based survey to develop a research agenda based on the outcomes of all phases. RESULTS: We have started working on 2 parts of the research prioritization exercise. Through the research-mapping exercise we identified 1241 journal articles and book chapters (referred to as research papers) and 225 publicly available reports (referred to as research reports) produced over the 2018-2020 period. Data collection for the national survey has also been completed. We received 973 fully completed responses to the survey. Analysis of these data is currently underway. CONCLUSIONS: This multi-method research agenda-setting study will be the first to provide an indication of the areas of health and social research that people across the Australian disability community consider should be prioritized in disability research funding decisions. Project results from all phases will be made publicly available through reports, open-access journal publications, and Easy Read documents. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/31126.
RESUMEN
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.
RESUMEN
Person-centred planning (PCP) has underpinned disability service provision in many Western countries for the past 30 years. For many people with an intellectual disability, family members are central to this process and are important allies in facilitating positive change. This article presents findings from an evaluation of a family resourcing and capacity building project in New South Wales (NSW), Australia. Accounts from families show the merits of such work, but family efforts can be undermined by apathy and discrimination to disability from extended family, community and service providers. Asking families to be the primary support in PCP initiatives may potentially ignore the impacts of structural and psycho-emotional disablism on all family members. For families to support people with intellectual disability in PCP, there is a need to acknowledge and respond to the material, cultural and personal challenges for all family members in planning processes.
