Angela Dew

Post-parental care: a new generation of sibling-carers

Family, friends and neighbours are typically more important in the lives of most people with developmental disabilities than are service agencies and professionals (Prosser & Moss, 1996). There are approximately 9,000 parents over the age of 65 years in Australia who are still living with an adult son or daughter with a disability. Simply put, their greatest concern for the future is ‘‘Who will look after my ‘child’ and in the way that I have done?’’ (Llewellyn, Gething, Kendig & Cant, 2003). The death or incapacity of the parent who has provided a lifetime of love, care and support, coupled with the associated loss of home and surrounding networks, can have a devastating impact on the person with a disability. Few people with a developmental disability living in the parental home marry or have children, and consequently they lack the traditional family members who would support them as they age. This lack of support poses the dilemma of who will provide the person with a developmental disability with the support they may need when their parents die or become too frail to continue supporting them in the family home. Caring, according to Twigg and Atkin (1994), almost always occurs within a context of kinship obligation with an underlying emotion of love between the carer and the person they are caring for and a sense of responsibility by the carer for the cared-for person. A sibling is likely to be the closest relative of the person with a developmental disability when parents die. The main informal network for the person with a disability may now hinge on their sibling relationship. Parents undoubtedly feel both love and responsibility for their offspring. Do siblings share these feelings for each other? According to Cicirelli (1995), the sibling relationship is potentially the longest standing relationship that a human being will have and, as the role of sibling is ascribed rather than achieved, it remains part of a person’s identity regardless of changes in life fortunes or circumstances. As the saying goes: ‘‘you can choose your friends but you can’t choose

Older disabled workers’ perceptions of volunteering

The activity of volunteering is readily available to, and undertaken by, able‐bodied people in Australia and is recognized as a valuable social pursuit, particularly among citizens of retirement age. Despite the known benefits of volunteering, however, there are few reports of disabled people participating as volunteers and little is understood of their experiences or perceptions of volunteering. The aim of this study was to explore how older workers within supported employment settings perceived the opportunities for and barriers to volunteering. Fourteen people with long‐standing impairments participated in this small qualitative study. Overall the participants were positive about volunteering, but noted they might require support to volunteer successfully. Drawing upon the participants’ views, recommendations are made for developing training. Disabled workers facing retirement need to be supported to have opportunities for active participation in the community as volunteers if so desired.

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 person-centred 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.

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

Abstract 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-, physio- and 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. Implications for Rehabilitation Therapy service delivery in rural and remote areas requires: Place-based and person centred strategies to build local capacity in communities. Responsive outreach programs working with individuals and local communities. Recognition of the need to support families who must travel to access remotely located specialist services. Innovative use of technology to supplement and enhance service delivery.

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

OPINIONS & PERSPECTIVES The need for new models for delivery of therapy intervention to people with a disability in rural and remote areas of Australia ANGELA DEW, CRAIG VEITCH, MICHELLE LINCOLN, JENNIE BRENTNALL, KIM BULKELEY, GISSELLE GALLEGO, ANITA BUNDY & SCOTT GRIFFITHS Faculty of Health Sciences, University of Sydney, Australia, and NSW Department of Family & Community Services, Ageing, Disability & Home Care, Australia

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

BackgroundPolicy 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/DesignThe 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.DiscussionThe 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.

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

Abstract 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 semistructured 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.

Support planning with people with intellectual disability and complex support needs in the Australian National Disability Insurance Scheme

Support planning has emerged in the last decade in recognition of the rights of people with disability to determine the support they receive and has gained prominence as a process for allocating in...

Self-determination: Adults with intellectual disability and their family

Adults with intellectual disability are increasingly being encouraged to take control of their lives through a range of goal-setting, choice- and decision-making opportunities. The current objectiv...

More, better, or different? NDIS workforce planning for people with intellectual disability and complex support needs

In Australia the disability sector is radically changing the way services are offered to people with disability under the National Disability Insurance Scheme (NDIS; National Disability Insurance S...