Background: Persons with profound and multiple learning disabilities (PMLD) risk exclusion, both in research and as members of society. Because of their embodied communication, they face the challenges in being understood. Oftentimes, others speak on their behalf making inferences on what their perspective might be. Methods: Empathy is suggested…

Background: Supported decision-making may increase self-determination among adults with intellectual disabilities by encouraging and empowering them to make decisions about their lives to the greatest extent possible. The aim of this study was to explore the perceptions and experiences of mothers of adults with intellectual disabilities in Ireland…

Background: The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) recommend all disabled people receive support to develop their autonomy. Subsequently, evolving models for supported decision-making and informed consent present guidance to enable autonomy support, which have relevance to people with intellectual…

Background: The number of people with intellectual disabilities and associated mental illness has increased considerably in recent years. This population presents greater obstacles than their peers without mental health problems in accessing education, leisure, and health services. This, conditions their quality of life (QoL) and makes them one of…

Background: All children have the right to express their views about matters affecting them and participate in decision-making for their future irrespective of their intellectual ability. This study explores the adult role in understanding the views of children with profound and multiple learning difficulties who are not using a formal…

Background: Many parents with learning difficulties face high rates of child welfare intervention and child removal. In contrast to other high-income countries, there has not been any published research on the lives of mothers and fathers with learning difficulties from an Austrian perspective. After presenting an insight into the international…

Background: Self-determination is a key construct to guarantee the development of skills that allow people with disabilities to acquire control over their lives. However, people with intellectual disabilities may have premature ageing processes that make it difficult to exercise these skills. This study seeks to determine the self-determination…

Background: Young people with intellectual disability experience important transitions as they move towards independent adult living. Transition is supported by self-determination, comprising volition (making conscious choices) and agency (acting with intention). Dialogic interactions that legitimise students' voices potentially promote…

Background: Academic research and reports from healthcare professionals tell us people with learning disabilities are not routinely supported to learn about end-of-life issues or make plans for the end of their lives. Materials: Questionnaires were used to check how much people knew. Accessible symbols were used to help people understand…

Background: Within Aotearoa New Zealand (ANZ), disability policy is directed at increasing choices for disabled people. However, funding to individuals remains insufficient to address wider social inequities that exist. While people with learning disability enjoy the freedom of living independently, they can be at risk of poor health outcomes and…

Background: Intervention to increase self-determination of people with learning disabilities is a major issue for social care practices. This study examines relational needs of people with learning disabilities regarding self-determination in the context of the relationships they share with social care professionals. Method: We held focus group…

Background: Living active adult lives is both a value and a right, but the right to do so is associated with restrictions among adults with learning disabilities. This research aimed to capture professionals' understanding and perception of active adult living for people with learning disabilities living in clustered housing in a Norwegian…

Background: Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older…

Participation, voice and control have long been central concerns in the research at Norah Fry. This paper focuses on inclusive research relating to choice and control, as experienced by people with learning disabilities who use personal budgets and direct payments, and aims to question how the process of inclusive research can be linked to wider…

In 2007, "self-directed support" was introduced in adult social care in England to establish choice and control--in the assessment process itself and over service provision--for "all" service users. The personalisation agenda is underpinned by a range of ideologies, particularly a civil rights empowerment approach and…