Cross Sector Service Coordination for People with High and Complex Needs: Harnessing Existing Evidence and Knowledge

People with high and complex needs will generally need an array of supports to enable social and economic participation as envisaged by the National Disability Insurance Scheme (NDIS). As participants, these people will receive funding from the NDIS to purchase services and supports from a range of different disability sector providers, but will also need to access various 'mainstream’ services including health, education, housing, justice and transport in order to pursue the life they choose. The complexity of the services system, and the interfaces between sectors, create gaps and barriers that are challenging for participants, service providers and for policy makers alike to navigate. Cross-sector coordination is a critical scheme design element to ensure that NDIS participants get the range of services and supports they need to pursue their goals and participate in society and the economy. Any failure of other sectors to provide access to quality services will increase the costs of disability support and risk the sustainability of the NDIS. Coordination can thus also be seen as a way of addressing this fundamental risk facing the NDIS. For these reasons cross-sector coordination should be a core element in NDIS design. The disability field is actively discussing these challenges and this paper aims to provide evidence to inform policy directions now being developed.The Centre for Disability Research and Policy at the University of Sydney and the Young People in Nursing Homes National Alliance were partners in a project, supported by the NDIACentre for Disability Research and Polic

Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu

Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and community-based disability-inclusive development. It is designed to produce meaningful and locally useful information and data, based on international data standards where possible, to enable aggregation at regional, national and international levels. Methods: Five complementary workstreams of research were carried out from 2011 to 2014: 1) literature review and analysis; 2) participatory action research with CBR stakeholders; 3) analysis and refinement of validity of concepts and structures; 4) consultation and review; and 5) synthesis of results. This article documents the method and key results of each of the five workstreams, and the lessons learned along the way. Results: The MM&M is now freely available on-line at http://sydney.edu.au/health-sciences/cdrp/projects/cbr-monitoring.shtml. Collaboration among members of the development team continues, chiefly via an on-line group to which new members have been welcomed. Conclusion and Implications: At the time of writing, the MM&M is the only international monitoring product, known to the authors, that consciously sets out to reflect both a ‘bottom- up’ and ‘top-down’ perspective of monitoring information and data. To achieve this for a complex programme such as CBR, and to align with its principles, it was essential to use a multi-component and multi-stage strategy for tool development, involving a diverse multidisciplinary team includingcollaboration with CBR stakeholders

In Search of an Integrative Measure of Functioning

International trends towards people-centred, integrative care and support require any measurement of functioning and disability to meet multiple aims. The information requirements of two major Australian programs for disability and rehabilitation are outlined, and the findings of two searches for suitable measures of functioning and disability are analysed. Over 30 current measures of functioning were evaluated in each search. Neither search found a generic measure of functioning suitable for these multibillion dollar programs, relevant to a wide range of people with a variety of health conditions and functioning experiences, and capable of indicating support needs, associated costs, progress and outcomes. This unsuccessful outcome has implications internationally for policy-relevant information for disability, rehabilitation and related programs. The paper outlines the features of an Integrative Measure of Functioning (IMF) based on the concepts of functioning and environmental factors in the International Classification of Functioning, Disability and Health (ICF). An IMF would be applicable across a variety of health conditions, settings and purposes, ranging from individual assessment to public health. An IMF could deliver person-centred, policy-relevant information for a range of programs, promoting harmonised language and measurement and supporting international trends in human services and public health.Centre for Disability Research and Polic

Telling stories about European Union Health Law: The emergence of a new field of law

The ideational narrative power of law has now solidified, and continues to solidify, ‘European Union health law’, into an entity with a distinctive legal identity. EU health law was previously seen as either non-existent, or so broad as to be meaningless, or as existing only in relations between EU law and health (the ‘and’ approach), or as consisting of a body of barely or loosely connected policy domains (the ‘patchwork’ approach). The process of bringing EU health law into being is a process of narration. The ways in which EU health law is narrated (and continues to be narrated) involve three main groups of actors: the legislature, courts and the academy

Internal medicine residency training for unhealthy alcohol and other drug use: recommendations for curriculum design

<p>Abstract</p> <p>Background</p> <p>Unhealthy substance use is the spectrum from use that risks harm, to use associated with problems, to the diagnosable conditions of substance abuse and dependence, often referred to as substance abuse disorders. Despite the prevalence and impact of unhealthy substance use, medical education in this area remains lacking, not providing physicians with the necessary expertise to effectively address one of the most common and costly health conditions. Medical educators have begun to address the need for physician training in unhealthy substance use, and formal curricula have been developed and evaluated, though broad integration into busy residency curricula remains a challenge.</p> <p>Discussion</p> <p>We review the development of unhealthy substance use related competencies, and describe a curriculum in unhealthy substance use that integrates these competencies into internal medicine resident physician training. We outline strategies to facilitate adoption of such curricula by the residency programs. This paper provides an outline for the actual implementation of the curriculum within the structure of a training program, with examples using common teaching venues. We describe and link the content to the core competencies mandated by the Accreditation Council for Graduate Medical Education, the formal accrediting body for residency training programs in the United States. Specific topics are recommended, with suggestions on how to integrate such teaching into existing internal medicine residency training program curricula.</p> <p>Summary</p> <p>Given the burden of disease and effective interventions available that can be delivered by internal medicine physicians, teaching about unhealthy substance use must be incorporated into internal medicine residency training, and can be done within existing teaching venues.</p

A framework for human microbiome research

A variety of microbial communities and their genes (the microbiome) exist throughout the human body, with fundamental roles in human health and disease. The National Institutes of Health (NIH)-funded Human Microbiome Project Consortium has established a population-scale framework to develop metagenomic protocols, resulting in a broad range of quality-controlled resources and data including standardized methods for creating, processing and interpreting distinct types of high-throughput metagenomic data available to the scientific community. Here we present resources from a population of 242 healthy adults sampled at 15 or 18 body sites up to three times, which have generated 5,177 microbial taxonomic profiles from 16S ribosomal RNA genes and over 3.5 terabases of metagenomic sequence so far. In parallel, approximately 800 reference strains isolated from the human body have been sequenced. Collectively, these data represent the largest resource describing the abundance and variety of the human microbiome, while providing a framework for current and future studies

Structure, function and diversity of the healthy human microbiome

Author Posting. © The Authors, 2012. This article is posted here by permission of Nature Publishing Group. The definitive version was published in Nature 486 (2012): 207-214, doi:10.1038/nature11234.Studies of the human microbiome have revealed that even healthy individuals differ remarkably in the microbes that occupy habitats such as the gut, skin and vagina. Much of this diversity remains unexplained, although diet, environment, host genetics and early microbial exposure have all been implicated. Accordingly, to characterize the ecology of human-associated microbial communities, the Human Microbiome Project has analysed the largest cohort and set of distinct, clinically relevant body habitats so far. We found the diversity and abundance of each habitat’s signature microbes to vary widely even among healthy subjects, with strong niche specialization both within and among individuals. The project encountered an estimated 81–99% of the genera, enzyme families and community configurations occupied by the healthy Western microbiome. Metagenomic carriage of metabolic pathways was stable among individuals despite variation in community structure, and ethnic/racial background proved to be one of the strongest associations of both pathways and microbes with clinical metadata. These results thus delineate the range of structural and functional configurations normal in the microbial communities of a healthy population, enabling future characterization of the epidemiology, ecology and translational applications of the human microbiome.This research was supported in part by National Institutes of Health grants U54HG004969 to B.W.B.; U54HG003273 to R.A.G.; U54HG004973 to R.A.G., S.K.H. and J.F.P.; U54HG003067 to E.S.Lander; U54AI084844 to K.E.N.; N01AI30071 to R.L.Strausberg; U54HG004968 to G.M.W.; U01HG004866 to O.R.W.; U54HG003079 to R.K.W.; R01HG005969 to C.H.; R01HG004872 to R.K.; R01HG004885 to M.P.; R01HG005975 to P.D.S.; R01HG004908 to Y.Y.; R01HG004900 to M.K.Cho and P. Sankar; R01HG005171 to D.E.H.; R01HG004853 to A.L.M.; R01HG004856 to R.R.; R01HG004877 to R.R.S. and R.F.; R01HG005172 to P. Spicer.; R01HG004857 to M.P.; R01HG004906 to T.M.S.; R21HG005811 to E.A.V.; M.J.B. was supported by UH2AR057506; G.A.B. was supported by UH2AI083263 and UH3AI083263 (G.A.B., C. N. Cornelissen, L. K. Eaves and J. F. Strauss); S.M.H. was supported by UH3DK083993 (V. B. Young, E. B. Chang, F. Meyer, T. M. S., M. L. Sogin, J. M. Tiedje); K.P.R. was supported by UH2DK083990 (J. V.); J.A.S. and H.H.K. were supported by UH2AR057504 and UH3AR057504 (J.A.S.); DP2OD001500 to K.M.A.; N01HG62088 to the Coriell Institute for Medical Research; U01DE016937 to F.E.D.; S.K.H. was supported by RC1DE0202098 and R01DE021574 (S.K.H. and H. Li); J.I. was supported by R21CA139193 (J.I. and D. S. Michaud); K.P.L. was supported by P30DE020751 (D. J. Smith); Army Research Office grant W911NF-11-1-0473 to C.H.; National Science Foundation grants NSF DBI-1053486 to C.H. and NSF IIS-0812111 to M.P.; The Office of Science of the US Department of Energy under Contract No. DE-AC02-05CH11231 for P.S. C.; LANL Laboratory-Directed Research and Development grant 20100034DR and the US Defense Threat Reduction Agency grants B104153I and B084531I to P.S.C.; Research Foundation - Flanders (FWO) grant to K.F. and J.Raes; R.K. is an HHMI Early Career Scientist; Gordon&BettyMoore Foundation funding and institutional funding fromthe J. David Gladstone Institutes to K.S.P.; A.M.S. was supported by fellowships provided by the Rackham Graduate School and the NIH Molecular Mechanisms in Microbial Pathogenesis Training Grant T32AI007528; a Crohn’s and Colitis Foundation of Canada Grant in Aid of Research to E.A.V.; 2010 IBM Faculty Award to K.C.W.; analysis of the HMPdata was performed using National Energy Research Scientific Computing resources, the BluBioU Computational Resource at Rice University

Disability-Related Questions for Administrative Datasets

High rates of unemployment among people with disability are long-standing and persistent problems worldwide. For public policy, estimates of prevalence and population profiles are required for designing support schemes such as Australia's National Disability Insurance Scheme; for monitoring implementation of the United Nations Convention on Rights of Persons with Disabilities; and for monitoring service access, participation, and equity for people with disability in mainstream systems including employment. In the public sector, creating a succinct identifier for disability in administrative systems is a key challenge for public policy design and monitoring. This requires concise methods of identifying people with disability within systems, producing data comparable with population data to gauge accessibility and equity. We aimed to create disability-related questions of value to the purposes of an Australian state and contribute to literature on parsimonious and respectful disability identification for wider application. The research, completed in 2017, involved mapping and identification of key disability concepts for inclusion in new questions, focus groups to refine wording of new questions, and online surveys of employees evaluating two potential new question sets on the topic of disability and environment. Recommendations for new disability-related questions and possible new data collection processes are being considered and used by the leading state authority