Justine O’Neill, Anthony Mulholland, Len Robinson, Kerry Watson, Basak Batmaz, Nicole Meikle
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引用次数: 0
Abstract
Objectives
People with intellectual disability are not always included in research or able to access academic research articles. This study has been co-conducted with people with intellectual disability about human rights and decision-making in the Australian context. The purpose of the article is to understand the perspectives of people with intellectual disability about decision-making, specifically (1) how people feel about making decisions, (2) what happens when they make decisions, and (3) the right to support for decision-making.
Methods
Participants shared their lived experience of decision-making as a person with intellectual disability. Responses were acquired from participants followed by a recording process, identifying common themes, and organising ideas. A team of authors with and without intellectual disability wrote the article using easy words, short sentences, and pictures to make the information easy to understand. The Easy Read article was tested with other participants with lived experience of intellectual disability to ensure it was accessible.
Results
The research shares (1) what is hard about making decisions and (2) what would make life better for people with intellectual disability. People with intellectual disability talked about the burden of having to prove their disability and not getting information that is easy to understand or support for decision-making.
Conclusions
There is action Australia can take to respect the human rights of people with intellectual disability to be involved in decisions about their own lives, including making a law that says people with disability have the right to support for decision-making.
期刊介绍:
Advances in Neurodevelopmental Disorders publishes high-quality research in the broad area of neurodevelopmental disorders across the lifespan. Study participants may include individuals with:Intellectual and developmental disabilitiesGlobal developmental delayCommunication disordersLanguage disordersSpeech sound disordersChildhood-onset fluency disorders (e.g., stuttering)Social (e.g., pragmatic) communication disordersUnspecified communication disordersAutism spectrum disorder (ASD)Attention-deficit/hyperactivity disorder (ADHD), specified and unspecifiedSpecific learning disordersMotor disordersDevelopmental coordination disordersStereotypic movement disorderTic disorders, specified and unspecifiedOther neurodevelopmental disorders, specified and unspecifiedPapers may also include studies of participants with neurodegenerative disorders that lead to a decline in intellectual functioning, including Alzheimer’s disease, amyotrophic lateral sclerosis, Creutzfeldt-Jakob disease, vascular dementia, Lewy body dementia, frontotemporal dementia, corticobasal degeneration, Huntington’s disease, and progressive supranuclear palsy. The journal includes empirical, theoretical and review papers on a large variety of issues, populations, and domains, including but not limited to: diagnosis; incidence and prevalence; and educational, pharmacological, behavioral and cognitive behavioral, mindfulness, and psychosocial interventions across the life span. Animal models of basic research that inform the understanding and treatment of neurodevelopmental disorders are also welcomed. The journal is multidisciplinary and multi-theoretical, and encourages research from multiple specialties in the social sciences using quantitative and mixed-method research methodologies.