Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.
Background Individuals with intellectual disability (ID) have a higher likelihood of exposure to identified risk factors for suicide when compared with the general community and have been recognised as being both capable of forming intent for suicide and acting on this intent. However, in spite of research outlining these concerns from the 1970s, there remains a dearth of studies that examine suicide amongst the population of people with ID. Method An online cross-sectional survey was purposively developed, with questions aimed at identifying both the experiences and current practices of support staff who assist people with ID in relation to suicide, suicidal behaviour and suicide assessment. It was undertaken across both rural and metropolitan areas in Australia. The survey was open for a period of 12 months. A total of 139 respondents (109 female/30 male), with a mean age of 41 and an average 12 years of experience in supporting people with ID, completed the tool. Results A total of nine suicides by people with ID were reported. Seventy-seven per cent of the
Objective The aim of the present study was to explore the use of complementary consent methodologies to support a potentially vulnerable group of people, namely those aging with intellectual disability, to provide personal input. It was premised on the view that processes to determine capacity for consent, appropriately modified to account for individual capabilities and current circumstances, could facilitate meaningful participation in the development of personal health care plans of people previously excluded from contributing. Methods The present descriptive case study research was undertaken in New South Wales, Australia. A seven-step process for determining capacity for consent was developed, and 10 participants aged between 54 and 73 years with lifelong intellectual disability and health comorbidities were involved. A variety of assistive communication tools was used to support individuals to demonstrate their capacity for giving informed consent. Results After being provided with tailored support mechanisms, seven participants were considered to meet all seven components for determining capacity for consent. Three participants were deemed not to have capacity to give consent regardless of the type of support provided. Conclusions Three critical factors for facilitating personal involvement in decision making for individuals with an intellectual disability were identified: (1) defining consent specifically for the target outcome; (2) outlining the criteria needed for consent to be obtained; and (3) using appropriately modified alternative communication mechanisms as necessary. What is known about the topic? Self-determination is one of the fundamental principles of human rights legislation around the world and, as such, it is considered desirable to have personal input by individuals into the development of their own health care plans. However, this is not always considered feasible if the person comes from a group in the community perceived to be vulnerable to exploitation and viewed as lacking capacity to give informed consent. This results in the use of proxy respondents, who may not accurately represent the desires and life aspirations of the individual. What does this paper add? This paper examines the development and implementation of a targeted program to support individuals aging with lifelong intellectual disability to demonstrate their capacity to provide informed consent. Specifically, it outlines how alternative communications methods, tailored to personal needs and capacity, can assist an individual to both understand and then confirm their understanding of consent in order to participate in developing health care plans. What are the implications for practitioners? People with intellectual disability are now living longer and are increasingly at risk of serious health conditions. The development of long-term health management plans has traditionally not included individuals with more complex needs and moderate intellectual disability, but the present study shows that members of this cohort can...
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