The financial costs of registered nurse-led relationship-centred care : a single-case Australian feasibility study

People with intellectual disability are accommodated and cared for in a variety of settings in Australia. Direct care is delivered by a mixture of qualified health professionals (nurses) and unlicenced disability support workers in varying combinations depending on the complexity and chronicity of comorbidities experienced by people with intellectual disability. Although some of these disability services continue to employ registered nurses, the size and specialised education of this workforce is decreasing due to a myriad of policy changes, which has the effect of compromising continuity of care and adverse effects on health outcomes. The objective of this study was to compare the differences on the financial cost of a single case using different models of care with, and without, specialised registered nursing input. The single case had profound intellectual disability and multiple chronic and complex health problems and was cared for by a model that included 24 h registered nurse care and support. Four financial scenarios are presented, and the differences both in terms of actual cost, and potential health outcomes are discussed. This study has set the scene for a large study where health economic data can be compared against multiple cases, across a range of care contexts, in order to advance evidence about which models provide the better health outcomes for people with intellectual disability and associated multiple chronic and complex health problems

Countering the poor oral health of people with intellectual and develoopmental disability : a scoping literature review

Background: People with intellectual and developmental disability (IDD) have poor oral health and need support to maintain optimal oral health outcomes. Little is known about how, when and where to intervene for this population. Thus the aim of this review was to summarise the existing evidence surrounding improving oral health outcomes for people with IDD. Methods: A scoping literature review was conducted focusing on ‘oral health’ and ‘intellectual disability’. Systematic searches of five electronic databases were conducted in line with the study aims and two authors independently examined all records for relevance, with consensus achieved by a third author. Results: A small number of approaches and interventions were identified to support people with IDD to independently maintain optimal oral hygiene. Identified studies highlighted that caregivers play a vital role in the provision of oral health support, emphasising the effectiveness of educational interventions for caregivers. However, there was uncertainty regarding the efficacy of specific tooth brushing interventions for people with IDD. In cases of more severe IDD and/or dental-related behavioural problems, dental treatment under general anaesthesia was often both a necessary and effective method of oral health care provision. The findings also identified outreach and exclusive oral health services as successful strategies for increasing the limited access of people with IDD to oral care services. Conclusions: A uniform approach to supporting oral health for people with IDD is unlikely to succeed. A system based approach is needed to address the diverse needs of the population of people with IDD, their caregivers and service context. Further high quality evidence is required to confirm these findings

Oral health status and reported oral health problems in people with intellectual disability : a literature review

Background: People with intellectual disability (ID) experience poor oral health and are at greater risk of dental decay and periodontal diseases. This impacts on their general health and wellbeing. This review summarises the research literature about oral health status and contributing factors to poor oral health. Method: We conducted a literature review using “intellectual disability” and “oral health” as our two core areas of focus. Results: People with ID had poorer oral health, greater numbers of tooth extractions, more caries, fewer fillings, greater gingival inflammation, greater rates of endentulism, and had less preventative dentistry and poorer access to services when compared to the general population. Anxiety during dental procedures was a key issue for females with ID. Conclusions: Further research is needed to identify, pilot and test appropriate and effective interventions that can reduce this preventable health disparity. The design of an ID-specific dental anxiety scale is another priority

Report of the Research Project: Underpinning the Development of Future Intellectual and Developmental Disability Nursing Standards: For Professional Association Of Nurses In Developmental Disability, Australia (PANDDA) INC.

The advent of the National Disability Insurance Scheme (NDIS) in Australia brings about a major change in policy towards the funding and delivery of services to people with intellectual and developmental disability (IDD). Nurses with expertise in working with people with IDD will be at the forefront of the uncharted intersection between health and social services. This is a crucial historical moment to reposition and build the capacity of nursing of people with IDD. For this research, interviews were conducted with 18 nurses from across the Sydney basin who worked in a range of disability-specific roles. There were variable insights into the content and aim of the Standards, but broad acknowledgement of the role and importance of Standards for specialist areas of nursing, in particular with the advent of the NDIS. Where participants had detailed insight into the content of the Standards, they reported the value offered through having a guideline of what was expected from the intellectual and developmental disability nurse

Exploring the relationship between community mobility and quality of life, employment and completing further education for autistic adults

Introduction: Autistic adults face a range of unique barriers to accessing their communities via cars and/or public transport. Previous studies report that learning to drive can be difficult, and that using public transport can be filled with anxiety for autistic adults. Indeed, car and public transport access and use are associated with greater quality of life. This study sought to explore these factors for autistic adults, compared to non-autistic adults, using a large national sample. Methods: Data are from wave one of the Australian Longitudinal Study of Autism in Adulthood. Descriptive statistics and inferential analyses were used to describe and explore associations between community mobility, quality of life, employment status and educational attainment. Regression models were used to determine if community mobility use and access were predictors of quality of life, employment and education. Results: Autistic adults self-reported less accessibility to both public transport and driving to meet their community mobility needs and were less likely to use a car or public transport. Further, autistic adults reported significantly lower self-rated quality of life, were less likely to be employed and were less likely to have completed further education. Notably, although public transport or car access are not predictors of employment and educational outcomes, such access improves quality of life, but in different ways when compared to non-autistic adults. By contrast, public transport use is a predictor of better educational outcomes, and public transport and car use are predictors of both. Conclusions: More nuanced attention to autistic people's individual perspectives and their experiences will help better develop ways to more intuitively define and measure both access and use in a meaningful manner. Qualitative studies are needed to explore why access does not always equate to use. The needs of autistic people should be considered by a range of policies impacting community environments, such as urban and public transport design, training of police and transit authorities and emergency response

The role of nurses in a rapidly changing Australian disability policy landscape

Introduction: Australian disability policy is evolving in rapid and tangible ways. Research and disability policy are converging to a point where the unique contribution of nursing to this field of complex care is being recognised. This paper reports results from exploratory research about the role/s of nurses who work with people with intellectual and developmental disability (IDD). Methods: Three separate literature reviews were conducted alongside individual interviews with nurses who work in acute care settings and nurses who work primarily with people with IDD across a range of contexts. Results: The combined results show a consensus for the importance of nursing to support the health and wellbeing of people with IDD. Nurses who work with people with IDD need generic skills to provide physical care and specific relational skills in order to work effectively with different individuals and families both within and across the health and disability service systems. Implications: A new approach to conceptualising what is unique about the role of the nurse is needed as the disability policy landscape continues to evolve. Our research has identified a model of ‘nurse-led relationship-centred care’, however, more research is needed to theorise this model further and to embed this practice model in disability policy

Reframing the role, identity and standards for practice for registered nurses working in the specialty area of intellectual and developmental disability in Australia : the NDIS and beyond

Objective: To identify how existing specialty practice standards can inform the development of specialty practice standards for intellectual and developmental disability nurses. Setting: As the National Disability Insurance Scheme is implemented across Australia, the role of the registered nurse in caring for people with intellectual and developmental disability will change dramatically. Access to widely available, specialty practice standards will be necessary for the development of this field of nursing. Method: A descriptive design was used to identify the characteristics of speciality nursing practice standards published in Australia. A web search for all Australian nursing organisations and/or associations was conducted between 1 st June and 30th August 2017 using Google and Google Scholar. Once finalised, the first author led preliminary categorisation of all the published standards into a table that was cross-checked and edited by the research team until agreement was reached on terminology and content. Primary argument: Thirty-three of sixty-nine specialist nursing associations in Australia have publicly accessible specialty practice standards. The content of these standards can be categorised in six primary ways which reflect the categorical organisation of the Nursing and Midwifery Board of Australia practice standards. This suggests that “nursing” is a unifying identifier in the context of superficially disparate sub-specialty areas of practice. Therefore, existing nursing practice standards can be used to inform the development of new practice standards for specialist intellectual and developmental disability nurses. Conclusion: Newly developed specialty practice standards need to reflect the beliefs and values about nursing prescribed in the Nursing and Midwifery Board of Australia standards if intellectual and developmental disability specific practice standards are to be useful for developing this field of nursing

An exploration of the practice, policy and legislative issues of the specialist area of nursing people with intellectual disability : a scoping review

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance Scheme offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability