Informing Evidence-Based Health Policy for Rural Australia

NHMRC and Department of Human Services NSW, Ageing, Disability and Home Car

Rural Carers of People with Disabilities: Making Choices to Move or to Stay

When a child is born with, or an individual acquires, a disability in rural Australia, one of the decisions faced by the family is whether to remain living in a rural area or move to a larger metropolitan centre to access support services such as therapy. Understanding the factors that rural carers weigh up in making the decision to move or stay can inform the successful implementation of the National Disability Insurance Scheme (NDIS) in rural areas. Seventy-eight rural carers were recruited to participate in individual interviews or focus groups to discuss access to therapy services. Data were analysed using modified grounded theory involving thematic analysis and constant comparison. Participants made decisions about whether to stay living in their rural community or to move to a larger centre to receive therapy services according to three interlinked factors: personal factors related to their other family caring responsibilities; social factors including their informal support networks of family, friends, and community; and economic factors including employment and the time and cost of travelling to access specialist services in larger centres. These factors need to be considered in the roll-out of the NDIS to ensure that rural service users enjoy the benefit of a real choice to live in a rural area without reducing their access to support services.This research was funded by the National Health and Medical Research Council and New South Wales Family and Community Services, Ageing Disability and Home Care, Western Region in partnership with the Faculty of Health Sciences, University of Sydney

Integrating evidence into policy and sustainable disability services delivery in western New South Wales, Australia: the ‘wobbly hub and double spokes’ project

Background: Policy that supports rural allied health service delivery is important given the shortage of services outside of Australian metropolitan centres. The shortage of allied health professionals means that rural clinicians work long hours and have little peer or service support. Service delivery to rural and remote communities is further complicated because relatively small numbers of clients are dispersed over large geographic areas. The aim of this five-year multi-stage project is to generate evidence to confirm and develop evidence-based policies and to evaluate their implementation in procedures that allow a regional allied health workforce to more expeditiously respond to disability service need in regional New South Wales, Australia. Methods/Design: The project consists of four inter-related stages that together constitute a full policy cycle. It uses mixed quantitative and qualitative methods, guided by key policy concerns such as: access, complexity, cost, distribution of benefits, timeliness, effectiveness, equity, policy consistency, and community and political acceptability. Stage 1 adopts a policy analysis approach in which existing relevant policies and related documentation will be collected and reviewed. Policy-makers and senior managers within the region and in central offices will be interviewed about issues that influence policy development and implementation. Stage 2 uses a mixed methods approach to collecting information from allied health professionals, clients, and carers. Focus groups and interviews will explore issues related to providing and receiving allied health services. Discrete Choice Experiments will elicit staff and client/carer preferences. Stage 3 synthesises Stage 1 and 2 findings with reference to the key policy issues to develop and implement policies and procedures to establish several innovative regional workforce and service provision projects. Stage 4 uses mixed methods to monitor and evaluate the implementation and impact of new or adapted policies that arise from the preceding stages. Discussion: The project will provide policy makers with research evidence to support consideration of the complex balance between: (i) the equitable allocation of scarce resources; (ii) the intent of current eligibility and prioritisation policies; (iii) workforce constraints (and strengths); and (iv) the most effective, evidence-based clinical practice

Addressing the barriers to accessing therapy services in rural and remote areas

Purpose: Throughout the world, people with a disability who live in rural and remote areas experience difficulty accessing a range of community-based services including speech-, physioand occupational therapy. This paper draws on information gathered from carers and adults with a disability living in a rural area in New South Wales (NSW), Australia to determine the extent to which people living in rural areas may receive a person-centred therapy service. Methods: As part of a larger study in rural NSW into the delivery of therapy services, focus groups and individual interviews were conducted with 78 carers and 10 adults with a disability. Data were analysed using constant comparison and thematic analysis. Results: Three related themes emerged: (i) travelling to access therapy; (ii) waiting a long time to get therapy; and (iii) limited access to therapy past early childhood. The themes overlaid the problems of recruiting and retaining sufficient therapists to work in rural areas. Conclusions: Community-based rehabilitation principles offer possibilities for increasing person-centred therapy services. We propose a person-centred and place-based approach that builds on existing service delivery models in the region and involves four inter-related strategies aimed at reducing travel and waiting times and with applicability across the life course

Addressing the barriers to accessing therapy services in rural and remote areas

Purpose: Throughout the world, people with a disability who live in rural and remote areas experience difficulty accessing a range of community-based services including speech-, physioand occupational therapy. This paper draws on information gathered from carers and adults with a disability living in a rural area in New South Wales (NSW), Australia to determine the extent to which people living in rural areas may receive a person-centred therapy service. Methods: As part of a larger study in rural NSW into the delivery of therapy services, focus groups and individual interviews were conducted with 78 carers and 10 adults with a disability. Data were analysed using constant comparison and thematic analysis. Results: Three related themes emerged: (i) travelling to access therapy; (ii) waiting a long time to get therapy; and (iii) limited access to therapy past early childhood. The themes overlaid the problems of recruiting and retaining sufficient therapists to work in rural areas. Conclusions: Community-based rehabilitation principles offer possibilities for increasing person-centred therapy services. We propose a person-centred and place-based approach that builds on existing service delivery models in the region and involves four inter-related strategies aimed at reducing travel and waiting times and with applicability across the life course

The need for new models for delivery of therapy intervention to people with a disability in rural and remote areas of Australia

Early therapy intervention by occupational therapists, physiotherapists, and speech pathologists (therapists) is recognised to yield benefits across the lifecourse (Carpenter, 2007; Law, 2002; Thomaidis, Kaderoglou, Stefou, Damianou, & Bakoula, 2000; Ziviani, Feeney, Rodger, & Watter, 2010). As a result,there have recently been increases in funding for therapy positions in disability services in New South Wales(NSW), Australia (New South Wales Government, 2006). However, research by Keane, Smith, Lincoln,and Fisher (2011), Chisholm, Russell, and Humphreys (2011), and Denham and Shaddock (2004) indicated that there is a shortage of therapists living and working in rural and remote areas of Australia

Carer and service providers’ experiences of individual funding models for children with a disability in rural and remote areas

There is a global movement for people with a disability towards personcentred practices with opportunities for self-determination and choice. Person-centred approaches may involve individual funding (IF) for the purchase of required support. A shift to a person-centred model and IF should allow people with a disability and their carers greater choice in therapy access. However, individuals who live in rural and remote areas have less choice and access to therapy services than their metropolitan counterparts. Drawing on data from a larger study into therapy service delivery in a rural and remote area of New South Wales, Australia, this study describes some benefits and barriers to using IF to access therapy services in rural areas. Ten carers and 60 service providers participated in audio-recorded focus groups and individual interviews during which IF was discussed. Transcribed data were analysed using thematic analysis and constant comparison. Greater access to and choice of therapy providers were identified as benefits of IF. Four barriers were identified: (i) lack of information and advice; (ii) limited local service options and capacity; (iii) higher costs and fewer services and (iv) complexity of self-managing packages. A range of strategies is required to address the barriers to using IF in rural and remote areas. Carers indicated a need for: accessible information; a local contact person for support and guidance; adequate financial compensation to offset additional travel expenses and coordinated eligibility and accountability systems. Service providers required: coordinated cross-sector approaches; local workforce planning to address therapist shortages; certainty around service viability and growth; clear policies and procedures around implementation of IF. This study highlights the need for further discussion and research about how to overcome the barriers to the optimal use of an IF model for those living in rural and remote areas

Policy Development and Implementation for Disability Services in Rural New South Wales, Australia

Throughout their lives, all people, including those who have a disability, use a broad range of community services. Community services are important in assisting people with a range of impairments to participate in their communities. Vast geographic distances and a lack of therapists in rural and remote regions of Australia pose significant barriers for implementing policy aimed at supporting people with a disability. The aim of this study was to investigate the extent to which metropolitan-formulated policy encompassed the unique geographic, demographic, and sociocultural challenges experienced by rural therapists and people with a disability in New South Wales (NSW). Twenty-seven policy documents were reviewed and categorized into tier 1 (higher level strategic policies) and tier 2 (specific operational policies). Tier 1 policy documents provided consistent messages about the need to develop strategies and service delivery options to address geographic, cultural, and age-related barriers facing all people in NSW including those who have a disability. Tier 2 documents revealed a lack of attention to the practical differences between implementing the policy principles in metropolitan compared with rural areas. Study findings identify that the implementation of metropolitan-formulated policy does not always encompass the unique challenges experienced by therapists providing services to rural people with a disability and their carers. This study highlights the importance of “rural proofing” policy to consider people who live and work in rural areas

Who are they and what do they do? Profile of allied health professionals working with people with disabilities in rural and remote New South Wales

Objective: To explore the characteristics of allied health professionals (AHPs) working with people with disabilities in western New South Wales. Design: A cross-sectional survey was conducted using an online questionnaire. Setting: Rural western NSW. Participants: AHPs including physiotherapists, speech pathologists, occupational therapists and psychologists (“therapists”) working with people with disabilities. Main outcome measure: Questionnaire Results: The majority of respondents were female (94%), with a mean age of 39 years; average time since qualification was 14 years; mean years in current position was 6. Most worked with people with a lifelong disability. Two-thirds reported family ties kept them in rural areas; 71% grew up in a rural/remote area. Most participants (94%) enjoyed the rural lifestyle and 84% reported opportunities for social interaction as good or very good. Participants with dependent children were less likely to cease working in western NSW within 5 years than those without dependent children (p<0.05). Conclusions: The characteristics of therapists working with people with disabilities in rural NSW were identified. Overall working, but also social, conditions and community attachment were important for this group. Understanding the workforce will contribute to policy development to meet increasing demands for therapy services.The project is jointly funded through the National Health and Medical Research Council ‘Partnerships for Better Health’ scheme, by the National Health and Medical Research Council (ID 571446) and NSW Government Family and Community Services – Ageing, Disability and Home Care (Western Region)

Recruitment and retention of allied health professionals in the disability sector in rural and remote New South Wales, Australia

Background: People with disability living in rural areas are vulnerable to the loss of access to allied health services due to a critical shortage of allied health professionals (AHPs). This study aimed to investigate recruitment and retention issues of importance to AHPs providing services to people with disability in rural New South Wales, Australia. Method: Focus groups and semi-structured interviews were conducted with 97 purposively sampled service providers in the disability sector. Interviews and focus groups were digitally recorded and transcribed. A modified grounded theory approach using thematic analysis and constant comparison was used to analyse the data. Results: Three major themes relating to recruitment and retention were identified: (a) flexible recruitment, (b) retention strategies that work, and (c) challenges to retention. Conclusions: AHPs in the disability sector identified some of the same issues influencing recruitment and retention as AHPs in the health, education, and private sectors. Several unique issues were also identified that will assist policymakers to improve recruitment and retention of AHPs employed in the disability sector in rural areas