Optimising self-managed funding for people with a long-term disability: dialogue summary

A day-long stakeholder dialogue was held on 5 March, 2015 to consider the factors which influence the uptake of self-managed funding by people with a long-term disability, and identify barriers and facilitators to the implementation and uptake of self-managed funding. Sixteen people participated. Discussions noted the following key considerations: The term ‘self-managed’ funding is more appropriate for people with long-term disability, particularly those who experience cognitive impairment. It should be assumed that all people with a long-term disability have the right to take up self-managed funding. Every person with a long-term disability has some capacity to self-manage their funding, and efforts should focus on building this capacity through education and training. Although people with a long-term disability may not want to take up self-managed funding the first time it is offered to them, every effort should be made to allow them ample time to consider it and opportunities provided to enable consumers and carers to ask for more information about what is required to participate. The approach to self-managed funding needs to be different for people with catastrophic injury compared with other conditions. Self-managed funding should be offered early for maximal uptake. To date, in the early implementation stages of current models, more people with spinal cord injury (SCI) than people with traumatic brain injury (TBI) have taken up self-managed funding; this is assumed to be a reflection of the additional complexities in the needs of people with TBI. To have greater success in the uptake of self-managed funding for people with a traumatic brain injury (TBI), there needs to be considerable thought about making the processes involved appropriate, particularly for those with cognitive and behavioural impairments. The capacity of people with a TBI to undertake the tasks associated with self-managed funding needs to be assessed by staff who have trained skills and also reasonable expectations of what can be accomplished. The relationship of the Carers and Family members with a person with a TBI needs to be supported through a range of offerings for self-managed funding. Funding agencies and service providers need to build trust and be willing to work collaboratively with people with long-term disabilities to ensure that they can consider self-managed funding as a means of empowerment and control. Encouraging and actively supporting people in peer support networks to talk to others about what the experience of self-managed funding is like and/or having consumer organisations conduct forums that present real-life experiences were considered next steps to increasing the uptake of self-managed funding

Optimising support for informal carers of the long-term disabled to enhance resilience and sustainability

Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. Executive summary People with severe and chronic disabilities represent a significant proportion of the population who require assistance to live in their own home and be a part of the community. In addition to assistance from the paid carer workforce, this assistance is provided by family, relatives or friends who are not paid or formally trained in the provision of care and support. These informal carers assist with a variety of tasks including activities of daily living, emotional care and support and accessing medical care and ongoing therapy to optimise independence. There are 2.7 million people in Australia who provide informal (unpaid) care to a person with a disability or long-term health condition, of which 770,000 provide the majority of care and support to people with a severe disability. Given their substantial contribution to care provision and the physical, emotional and other impacts of providing care, it is important to understand the experience of informal carers and address their support needs. In recent years, studies have elucidated the substantial effects of providing care on the psychological, physical, social and other impacts of providing care to a person with a long-term disability. There are a range of interventions to mitigate these impacts, which are provided in Australia through a variety of national and local government and nongovernment entities with varying efficacy. Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. This NTRI Forum aims to investigate effective strategies for providing support (excluding skills-related education and training, i.e. manual handling and transfers) to informal carers that can help to optimise their resilience, and the sustainability of the long-term disabled. An evidence review of literature identified 25 relevant reviews and primary studies and a further 16 ongoing primary studies. The overall results of reviews of carer support interventions were inconclusive, therefore firm conclusions regarding what works and doesn’t work cannot be made. However, evidence was reported as ‘good’ for educational and psycho-educational interventions, counselling and psychosocial interventions and multicomponent interventions; Evidence for care co-ordination and family support interventions was described as ‘promising’; Evidence for technology-based interventions was conflicting in the setting of Dementia, but more positive in the area of catastrophic injury; Evidence for respite care was described as ‘not strong’, and although benefits were reported, the importance of additional support strategies in conjunction with respite care was emphasised. Similarly, emerging positive evidence in favour of support groups was reported, however additional concurrent support strategies were recommended. Passive information dissemination alone was found to be ineffective. The review also outlined a range of factors to consider in interpreting this evidence and identified implications for practice and research

Optimising self-directed funding for the long-term disabled: briefing document

People with long-term disabilities have become increasingly frustrated with the inadequate support services provided by the disability sector. In particular, people with long-term disabilities want to have support services which met their needs as well as greater choice and control in the decisions around them. Over the last five years the popularity of self-directed funding has increased significantly. In 2011/12 the Australian Government made a commitment to implement a National Disability Insurance Scheme (NDIS) as advised through an inquiry by the Productivity Commission to have full rollout country wide by 2018. Self-directed funding is used as a mechanism to promote self-determination and empowerment in people with long-term disabilities and to facilitate their living in the community independently. Self-directed funding can be provided by an individual package held by a provider, by an individual budget held by the person to spend through providers or by direct payments to spend on the open market. The implementation of self-directed funding models has been implemented in various forms over the past couple of decades, including the piloting of small scale programs and the introduction of larger scale programs by government bodies or departments in specific disability groups.  Self-directed funding models are strongly established in the UK, USA and Western Australia. The inclusion of infrastructure supports such as independent brokers, financial intermediaries and ongoing support for clients are beneficial features of established models, particularly for people with complex needs. Despite their popularity, there is a lack of evidence about the effectiveness of self-directed funding models in practice, and no evidence comparing different models.  No single model has been demonstrated to be superior to another, likely in part because the cultural and political context in which a scheme is introduced has a strong influence on its design, implementation and outcomes. Despite this, there are consistent indications that offering flexible and creative options within models is the best approach for ensuring people with more complex and potentially unmet needs, have an opportunity to take up self-directed funding successfully. There are limited studies of the feasibility and impact of self-directed funding for people in the compensable sector with catastrophic injuries. Qualitative studies using interviews or questionnaires reveal that, generally, people with long-term disabilities recognise that self-directed funding should be one option among the range of options for receiving necessary support services; however, there is variability in the stated willingness to take on self-directed funding themselves. A lack of awareness of what is involved in self-directed funding and how it can be managed has been reported. In addition, it has been suggested that not all people have the skills, education or experience to manage self-directed funding, hence training and information sessions that are understandable and comprehensive are likely to be necessary in order to encourage uptake.  This NTRI Forum aims to consider the factors which influence the uptake of self-directed funding by the long-term disabled. Two questions were identified for deliberation in a Stakeholder Dialogue: 1. What are the barriers and facilitators to optimal implementation and uptake of self- directed funding in Australia and New Zealand? 2. How can knowledge of barriers and facilitators be used to address these challenges

Specialist Outreach to Isolated and Disadvantaged Communities: A Population-Based Study

Background Visiting-specialist clinics (specialist outreach) have the potential to overcome some of the substantial access barriers faced by disadvantaged rural, remote, and Indigenous communities, but the effectiveness of outreach clinics has not been assessed outside urban and non-disadvantaged settings. We aimed to assess the effects of outreach clinics on access, referral patterns, and care outcomes in remote communities in Australia. Methods We undertook a population-based observational study of regular surgical, ophthalmological, gynaecological, and ear, nose, and throat outreach visits, compared with hospital clinics alone, on access, referral practices, and outcomes for the populations of three remote Indigenous communities in northern Australia for 11 years. We assessed all new non-emergency potential specialist surgical cases who presented initially between Jan 1, 1990, and Jan 1, 2001. The effects of outreach clinics on the proportion of patients referred, the time from referral to initial specialist consultation, and the rates of community-based and hospital-based procedures were analysed using logic regression and Cox proportional hazard models. Findings 2339 new surgical problems presented in 2368 people between 1990 and 2001. Outreach improved the rate of referral completion (adjusted hazard ratio 1.41, 95% CI 1.07-1.86) and the risk of timely completion according to the urgency of referral (adjusted relative risk 1.30, 1.05-1.53). Outreach had no significant effect on initiation of elective referrals, but there were 156 opportunistic presentations on outreach clinic days. Specialist investigations and procedures in community clinics removed the need for many patients to travel to hospital, and outreach consultations were associated with a reduced rate of procedures that needed hospital admission (adjusted hazard ratio 0.67, 0.43-.03). Interpretation Specialist outreach visits to remote disadvantaged Indigenous communities in Australia improve access to specialist consultations and procedures without increasing elective referrals or demands for hospital inpatient services

Optimising return to work practices following catastrophic injury

This paper aims to enhance understanding of the features of optimal return to work practices following traumatic brain and spinal cord injury and identify barriers and facilitators to their implementation. Executive summary People with catastrophic injuries face many long-term challenges in the community as a result of their injury: one of the most problematic can be in returning to work (RTW). It may not only be a significant issue for the person with a catastrophic injury but also for their family, friends, the employment industry, and society. Worldwide mean RTW rates for people with catastrophic injury are approximately 30-40%; however, in Australia the overall mean rate is unknown. Internationally, the best RTW rates reported for moderate to severe traumatic brain injury (TBI) come from the UK, Sweden and USA, whilst for spinal cord injury (SCI) they are in Switzerland and Sweden. There are several differences in the way rates reported are calculated such as the time post-injury, making it difficult to definitively identify whether one country achieves better RTW rates than another. Several studies have been conducted to determine the factors which facilitate and limit RTW for people with catastrophic injury. These include having pre-injury employment, age, education, severity of injury, level of cognitive impairment, being functionally independent, fatigue, psychological adjustment to the change, social support and the work environment to name a few. There is a general lack of understanding of the experience of people with catastrophic injury who return to work and, therefore, little known about how job retention can be successful in the long-term. Four types of VR interventions have been identified to facilitate RTW – 1) program based rehabilitation, 2) supported employment, 3) case co-ordination and 4) hybrid or mixed. An evidence review identified 15 relevant articles and it was found that there was limited high quality evidence to support any type of intervention more effective than the other. There was however moderate evidence identified for the effectiveness of case co-ordination for achieving successful RTW for people with moderate to severe TBI and high level evidence for a specialist TBI-VR combination intervention. A reduction in the claiming of benefits after 1 year was also observed. The most promising RTW intervention for people with SCI appears to be supported employment; however, as only one RCT has provided this evidence, further studies are required. Several factors that affect the likely success of RTW interventions were also identified in exploring the research evidence and implications for future research were identified. Substantial research has been conducted on RTW interventions in people with TBI since the late 1980s, however this is not the same for SCI. High quality evidence and transparent reporting of study details are still lacking. This NTRI Forum aims to enhance understanding of the features of optimal return to work practices following traumatic brain and spinal cord injury and identify barriers and facilitators to their implementation. Two questions were identified for deliberation in a Stakeholder Dialogue: 1. In the Australian context, what are the barriers to, and facilitators of, application of strategies to optimise RTW outcomes for people with catastrophic injury? 2. How could identified barriers and facilitators be addressed to ensure successful RTW and better retention of people with catastrophic injury? An accompanying document (Dialogue Summary) will present the results of the deliberation upon these question

Geographic Variation in Informed Consent Law: Two Standards for Disclosure of Treatment Risks

We analyzed 714 jury verdicts in informed consent cases tried in 25 states in 1985–2002 to determine whether the applicable standard of care (“patient” vs. “professional” standard) affected the outcome. Verdicts for plaintiffs were significantly more frequent in states with a patient standard than in states with a professional standard (27 percent vs. 17 percent, P = 0.02). This difference in outcomes did not hold for other types of medical malpractice litigation (36 percent vs. 37 percent, P = 0.8). The multivariate odds of a plaintiff’s verdict were more than twice as high in states with a patient standard than in states with a professional standard (odds ratio = 2.15, 95% confidence interval = 1.32–3.50). The law’s expectations of clinicians with respect to risk disclosure appear to vary geographically

Systems Medicine Disease: Disease Classification and Scalability Beyond Networks and Boundary Conditions

In order to accommodate the forthcoming wealth of health and disease related information, from genome to body sensors to population and the environment, the approach to disease description and definition demands re-examination. Traditional classification methods remain trapped by history; to provide the descriptive features that are required for a comprehensive description of disease, systems science, which realizes dynamic processes, adaptive response, and asynchronous communication channels, must be applied (Wolkenhauer et al., 2013). When Disease is viewed beyond the thresholds of lines and threshold boundaries, disease definition is not only the result of reductionist, mechanistic categories which reluctantly face re-composition. Disease is process and synergy as the characteristics of Systems Biology and Systems Medicine are included. To capture the wealth of information and contribute meaningfully to medical practice and biology research, Disease classification goes beyond a single spatial biologic level or static time assignment to include the interface of Disease process and organism response (Bechtel, 2017a; Green et al., 2017)

A New Approach to Evidence Synthesis in Traumatic Brain Injury: A Living Systematic Review.

Living systematic reviews (LSRs) are online summaries of health care research that are updated as new research becomes available. This new development in evidence synthesis is being trialled as part of the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury (CENTER-TBI) project. We will develop and sustain an international TBI knowledge community that maintains up-to-date, high quality LSRs of the current state of knowledge in the most important questions in TBI. Automatic search updates will be run three-monthly, and newly identified studies incorporated into the review. Review teams will seek to publish journal updates at regular intervals, with abridged updates available more frequently online. Future project stages include the integration of LSR and other study findings into "living" clinical practice guidance. It is hoped these efforts will go some way to bridging current temporal disconnects between evidence, guidelines, and practice in TBI

Organising health care services for people with an acquired brain injury: an overview of systematic reviews and randomised controlled trials

This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Background Acquired brain injury (ABI) is the leading cause of disability worldwide yet there is little information regarding the most effective way to organise ABI health care services. The aim of this review was to identify the most up-to-date high quality evidence to answer specific questions regarding the organisation of health care services for people with an ABI. Methods We conducted a systematic review of English papers using MEDLINE, EMBASE, PsycINFO, CINAHL and the Cochrane Library. We included the most recently published high quality systematic reviews and any randomised controlled trials, non-randomised controlled trials, controlled before after studies or interrupted time series studies published subsequent to the systematic review. We searched for papers that evaluated pre-defined organisational interventions for adults with an ABI. Organisational interventions of interest included fee-for-service care, integrated care, integrated care pathways, continuity of care, consumer engagement in governance and quality monitoring interventions. Data extraction and appraisal of included reviews and studies was completed independently by two reviewers. Results A total of five systematic reviews and 21 studies were included in the review; eight of the papers (31%) included people with a traumatic brain injury (TBI) or ABI and the remaining papers (69%) included only participants with a diagnosis of stroke. We found evidence supporting the use of integrated care to improve functional outcome and reduce length of stay and evidence supporting early supported discharge teams for reducing morbidity and mortality and reducing length of stay for stroke survivors. There was little evidence to support case management or the use of integrated care pathways for people with ABI. We found evidence that a quality monitoring intervention can lead to improvements in process outcomes in acute and rehabilitation settings. We were unable to find any studies meeting our inclusion criteria regarding fee-for-service care or engaging consumers in the governance of the health care organisation. Conclusions The review found evidence to support integrated care, early supported discharge and quality monitoring interventions however, this evidence was based on studies conducted with people following stroke and may not be appropriate for all people with an ABI