An environment built to include rather than exclude me: Creating inclusive environments for human well-being

Contemporary discourses which challenge the notion of health as the 'absence of disease' are prompting changes in health policy and practice. People with disability have been influential in progressing our understanding of the impact of contextual factors in individual and population health, highlighting the impact of environmental factors on functioning and inclusion. The World Health Organization's (WHO) more holistic definition of health as 'wellbeing' is now applied in frameworks and legislation, and has long been understood in occupational therapy theory. In practice, however, occupational therapists and other professionals often address only local and individual environmental factors to promote wellbeing, within systems and societies that limit equity in population health and restrict inclusion in communities. This paper presents an in-depth analysis of the supports and accommodations identified by a cohort of individuals (n-100) living with disability. A range of environmental facilitators and barriers were identified in peoples' experience of 'inclusive community environs' and found to influence inclusion and wellbeing. The roles and responsibilities of individuals, professionals, and society to enact change in environments are discussed in light of these findings. Recommendations include a focus on the subjective experience of environments, and application of theory from human rights and inclusive economics to address the multiple dimensions and levels of environments in working towards inclusion and wellbeing

The duplicity of choice and empowerment: disability rights diluted in Australia’s policies on assistive technology

The combination of choice as a contested concept and its increasing adoption as a policy principle necessitates a critical analysis of its interpretation within Australia’s reforms to disability services. While choice may appear to be an abstract and flexible principle in policy, its operationalization in practice tends to come with conditions. This paper investigates the interpretation of choice in the National Disability Insurance Scheme (NDIS), via an interpretive policy analysis of assistive technology (AT) provision. Analysis of policy artefacts reveals a diminishing influence of disability rights in favor of an economic discourse, and contradictory assumptions about choice in the implementation of legislation. The language of choice and empowerment masks the relegation of the presumption of capacity to instead perpetuate professional power in determining access to resources by people with disability

The right choice? An interpretive policy analysis of assistive technology in Australian disability services

This thesis explores how assistive technology (AT) and choice are interpreted in contemporary disability rights, and how these rights are implemented in Australian policy. AT comprises products and services that are used to improve the ease and effectiveness of performance in a range of tasks and roles. People with disability use AT to enable participation in society by mediating the effects of impairment and environmental barriers. Effective use of AT facilitates inclusion, but access to and outcomes from AT have often been inequitable or inconsistent due to fragmented systems and limited involvement of AT users in decision-making. This thesis explores how the concepts of disability, AT and choice are understood by people who develop and implement policy, and by affected citizens including service providers and consumers. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) protects and promotes the civil, cultural, economic and social rights of people with disability. This thesis investigates Australia’s policy reforms since ratifying the CRPD in 2008 through an interpretive policy analysis of AT provision, focusing on the National Disability Strategy (NDS) and National Disability Insurance Scheme (NDIS). It argues that the meanings ascribed shape the ways in which disability rights are progressively implemented in policy and how choice is constructed in AT provision. The research aims to capture progress at a single point in time to influence future debate and further policy development. The interpretive policy analysis was approached systematically, incorporating multiple data sources and qualitative analysis methods. This involved identifying artefacts (data sources) and individuals and communities relevant to AT provision and Australia’s policy reforms in disability services. Key documents produced since Australia ratified the CRPD were investigated through the process of category analysis, to reveal interpretations of disability, AT and choice from the perspectives of policymakers (government), implementers (government agencies) and affected citizens (service providers and consumers). To ensure that under-represented groups’ interpretations were heard, five individuals from the affected citizens’ community were interviewed about their experiences of AT provision and choice in different contexts. The participants’ accounts were explored in detail using Interpretive Phenomenological Analysis (IPA) to identify patterns in the emergent themes. The findings in this thesis suggest that many people in Australia are still operating in an old paradigm that conflates disability with impairment, and considers disability a health issue. Policy implementers have interpreted assistive technology as products only, and choice as a means to improve efficiency, relying on technological innovation and market mechanisms as solutions instead of addressing the issues of access to AT and quality of services as identified by affected citizens. The ambiguity of choice as a policy principle means that it aligns with both liberal ideals that adopt market competition in public services and the human rights agenda, though these adopt different mechanisms and appear to deliver different outcomes. This thesis concludes by considering alternative conceptualisations and approaches for policy development and the cultural change required to realise disability rights and improve AT provision. Australia’s policies can evolve to support AT provision practices that facilitate the ongoing self-management of AT users by prioritising collaborative relationships. Re-framing choice as both a means and an end is consistent with a capabilities approach that aims to boost people’s opportunities in life through individual and collective resources. Understanding that AT is a process as well as products, and that AT provision is often a pre-requisite for participation, may reorient policies toward building and sustaining social capital rather than stimulating market competition. Considering impairment as another dimension of diversity instead of a specialist health issue may enable mainstreaming in policy through a universal design (UD) approach. This thesis contributes to the theoretical and practical challenge of realising the CRPD’s vision for an inclusive society. It argues that this requires an understanding of the universality of impairment and a culture that embraces diversity and understands the role and value of AT

Content analysis to locate assistive technology in Queensland's motor injury insurance rehabilitation legislation and guidelines

Reforms to Australia’s disability and rehabilitation sectors have espoused the potential of assistive technology as an enabler. As new insurance systems are being developed it is timely to examine the structure of existing systems. This exploratory study examined the policies guiding assistive technology provision in the motor accident insurance sector of one Australian state. Methods: Policy documents were analyzed iteratively with set of qualitative questions to understand the intent and interpretation of policies guiding assistive technology provision. Content analysis identified relevant sections and meaningful terminology, and context analysis explored the dominant perspectives informing policy. Results and discussion: The concepts and language of assistive technology are not part of the policy frameworks guiding rehabilitation practice in Queensland’s motor accident insurance sector. The definition of rehabilitation in the legislation is consistent contemporary international interpretations that focus on optimizing functioning in interaction with the environment. However, the supporting documents are focused on recovery from injuries where decisions are guided by clinical need and affordability. Conclusion: The policies frame rehabilitation in a medical model that assistive technology provision from the rehabilitation plan. The legislative framework provides opportunities to develop and improve assistive technology provision as part of an integrated approach to rehabilitation

Understanding choice in assistive technology service provision: considerations for research methodology

The adoption of choice as a policy principle in disability services reforms warrants research into the practical implications for assistive technology provision. This paper outlines methodological considerations for the investigation of how choice is constructed and experienced in assistive technology provision. It argues for an interpretive approach that considers the interactions between stakeholders and the influence of contextual factors on choices over time. Understanding stakeholders’ interpretations and contextual factors that affect their choice behaviors in AT acquisition will assist the interpretation of AT outcomes. It may also assist in efforts to increase the usability of AT services, develop improved service delivery models, and target policy initiatives to support AT provision practices

Field Results from Three Campaigns to Validate the Performance of the Miniaturized Laser Heterodyne Radiometer (MiniLHR) for Measuring Carbon Dioxide and Methane in the Atmospheric Column

In a collaboration between NASA GSFC and GWU, a low-cost, surface instrument is being developed that can continuously monitor key carbon cycle gases in the atmospheric column: carbon dioxide (CO2) and methane (CH4). The instrument is based on a miniaturized, laser heterodyne radiometer (LHR) using near infrared (NIR) telecom lasers. Despite relatively weak absorption line strengths in this spectral region, spectrallyresolved atmospheric column absorptions for these two molecules fall in the range of 60-80% and thus sensitive and precise measurements of column concentrations are possible. In the last year, the instrument was deployed for field measurements at Park Falls, Wisconsin; Castle Airport near Atwater, California; and at the NOAA Mauna Loa Observatory in Hawaii. For each subsequent campaign, improvement in the figures of merit for the instrument has been observed. In the latest work the absorbance noise is approaching 0.002 optical density (OD) noise on a 1.8 OD signal. An overview of the measurement campaigns and the data retrieval algorithm for the calculation of column concentrations will be presented. For light transmission through the atmosphere, it is necessary to account for variation of pressure, temperature, composition, and refractive index through the atmosphere that are all functions of latitude, longitude, time of day, altitude, etc. For temperature, pressure, and humidity profiles with altitude we use the Modern-Era Retrospective Analysis for Research and Applications (MERRA) data. Spectral simulation is accomplished by integrating short-path segments along the trajectory using the SpecSyn spectral simulation suite developed at GW. Column concentrations are extracted by minimizing residuals between observed and modeled spectrum using the Nelder-Mead simplex algorithm. We will also present an assessment of uncertainty in the reported concentrations from assumptions made in the meteorological data, LHR instrument and tracker noise, and radio frequency bandwidth and describe additional future goals in instrument development and deployment targe

Motivations and incentives: exploring assistive technology service delivery from the perspectives of multiple stakeholders

Knowledge and ideas about disability and Assistive Technology (AT) shape society’s construction, funding and delivery of AT services. Concepts such as individualism and objectivity have supported the progression of AT device design and the measurement of AT outcomes. Dominant ideas, however, may suppress other conceptions that offer alternative approaches to, and therefore outcomes of AT service delivery. This paper analyses AT service delivery from the perspectives of key stakeholders, utilizing reflective strategies informed by situational analysis and a pluralistic approach. The complexity of AT service delivery is de-constructed by describing experiences and validating the perceptions of AT users, practitioners and funding schemes, and then identifying the implicit and explicit influences on their actions. It explores the multiple and differing ideas about disability and AT, and discusses these in the context of current policies and systems. It challenges readers to recognize the dominant ideas shaping practice, and consider alternative approaches in an attempt to refine AT service delivery

Challenges of user-centred assistive technology provision in Australia: shopping without a prescription

Purpose: People with disability have a right to assistive technology devices and services, to support their inclusion and participation in society. User-centred approaches aim to address consumer dissatisfaction and sub-optimal outcomes from assistive technology (AT) provision, but make assumptions of consumer literacy and empowerment. Policy discourses about consumer choice prompt careful reflection, and this paper aims to provide a critical perspective on user involvement in assistive technology provision. Methods: User-centred approaches are considered, using literature to critically reflect on what user involvement means in AT provision. Challenges at the level of interactions between practitioners and consumers, and also the level of markets and policies are discussed, using examples from Australia. Results: There is no unanimous conceptual framework for user-centred practice. Power imbalances and differing perspectives between practitioners and consumers make it difficult for consumers to feel empowered. Online access to information and international suppliers has not surmounted information asymmetries for consumers or lifted the regulation of publicly funded AT devices. Conclusions: Ensuring access and equity in the public provision of AT is challenging in an expanding market with diverse stakeholders. Consumers require personalised information and support to facilitate their involvement and choice in AT provision. Implications for Rehabilitation: Variations in approaches informing AT provision practices have a profound impact on equity of access and outcomes for consumers. An internationalised and online market for AT devices is increasing the need for effective information provision strategies and services. Power imbalances between practitioners and consumers present barriers to the realisation of user-centred practice

Making sense of voices: a case series

The current evidence-base for the psychological treatment of distressing voices indicates the need for further clinical development. The Maastricht approach (also known as Making Sense of Voices) is popular within sections of the Hearing Voices Movement, but its clinical effectiveness has not been systematically evaluated. The aim of the approach is to develop a better understanding of the role of the voice, in part through opening a dialogue between the voice hearer and the voice. The current study was a (N=15) case series adopting a concurrent multiple baseline design. The Maastricht approach was offered for up to 9-months. The main outcome, weekly voice-related distress ratings, was not statistically significant during intervention or follow-up, although the effect size was in the moderate range. The PSYRATS Hallucination scale was associated with a large effect size both at the end of treatment, and after a 3-month follow-up period, although again the effect did not reach statistical significance. The results suggest further evaluation of the approach is warranted. However, given the large variance in individual participant outcome, it may be that a better understanding of response profiles is required before conducting a definitive randomised controlled trial

Genome-Wide Association Analysis Identifies a Mutation in the Thiamine Transporter 2 (SLC19A3) Gene Associated with Alaskan Husky Encephalopathy

Alaskan Husky Encephalopathy (AHE) has been previously proposed as a mitochondrial encephalopathy based on neuropathological similarities with human Leigh Syndrome (LS). We studied 11 Alaskan Husky dogs with AHE, but found no abnormalities in respiratory chain enzyme activities in muscle and liver, or mutations in mitochondrial or nuclear genes that cause LS in people. A genome wide association study was performed using eight of the affected dogs and 20 related but unaffected control AHs using the Illumina canine HD array. SLC19A3 was identified as a positional candidate gene. This gene controls the uptake of thiamine in the CNS via expression of the thiamine transporter protein THTR2. Dogs have two copies of this gene located within the candidate interval (SLC19A3.2 – 43.36–43.38 Mb and SLC19A3.1 – 43.411–43.419 Mb) on chromosome 25. Expression analysis in a normal dog revealed that one of the paralogs, SLC19A3.1, was expressed in the brain and spinal cord while the other was not. Subsequent exon sequencing of SLC19A3.1 revealed a 4bp insertion and SNP in the second exon that is predicted to result in a functional protein truncation of 279 amino acids (c.624 insTTGC, c.625 C>A). All dogs with AHE were homozygous for this mutation, 15/41 healthy AH control dogs were heterozygous carriers while 26/41 normal healthy AH dogs were wild type. Furthermore, this mutation was not detected in another 187 dogs of different breeds. These results suggest that this mutation in SLC19A3.1, encoding a thiamine transporter protein, plays a critical role in the pathogenesis of AHE.University of California, Davis. School of Veterinary Medicine. Center for Companion Animal Healt