These aims were addressed through liaison with key stakeholders in target rural towns within the Loddon-Mallee (Victoria), the Riverland (South Australia) and ...
Project Title: Targeted Health Initiatives for Country People with Developmental Disability Researchers: Associate Professor Robert Davis Dr. Teresa Iacono Professor John Humphreys Mr. Neale Chandler Funding: Rural Support Education & Training, Commonwealth Department of Health & Aged Care Executive Summary: Project Aims The aims of the project, Targeted Health Initiatives for Country People with Developmental Disability were: 1. To provide support, education and training to carers and professionals who interface with treatment and care of people with developmental disability in rural and remote communities. 1.1 Increase skills and thereby build the capacity of health service providers to meet the needs of people with developmental disability in rural areas 1.2 Provide ongoing support to health service providers and consumers, through a relationship with CDDHV that extends beyond the period of the project.
2. To provide mechanisms for people with developmental disability living in rural and remote communities to access local and metropolitan-based health care services and resources. These aims were addressed through liaison with key stakeholders in target rural towns within the Loddon-Mallee (Victoria), the Riverland (South Australia) and the Riverina (NSW) regions and engaging them in project activities. Context Recent Commonwealth Government initiatives have targeted rural health care needs, including problems in attracting and retaining health care professionals, in particular GPs, shortages in allied health services, and reduced hospital facilities. Problems in health care are exacerbated for people with developmental disability because of lack of expertise among health care providers and potential attitudinal barriers, as well as these individuals’ inability to independently access services. Project Activities Recruitment
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Key stakeholders included people with developmental disability, their families, direct care (support) workers, government and nongovernment (NGO) disability services, education professionals, allied health professionals, and general practitioners (GPs). Representatives from these stakeholder groups were recruited for participation in focus groups and interviews, and then follow-up educational activities conducted in Bendigo, and Swan Hill (LoddonMallee, Vic.), Cootamundra (Riverina, NSW) and Loxton (Riverland, SA).
Identifying Priorities Participants in these focus groups and interviews were asked about their concerns in the delivery of health care to people with developmental disability in their communities. Transcripts from these discussions were analysed using qualitative procedures to reveal themes relating to key problems and barriers in the delivery of health care of this group. While a number of themes emerged from each stakeholder group, they converged into three key issues: (1) negative attitudes towards people with developmental disability by health care providers, (2) problems in accessing services, and (3) the burden on carers. Educational Activities Also emerging from the focus group and interview discussions were topics for educational activities. These topics were integrated into service expos and/or forums, held over half day (weekend) or evening sessions in each of Bendigo, Swan Hill, Cootamundra and Loxton. These sessions were well received, with all stakeholder groups represented. Although attendance by GPs was limited, those who did attend reported finding the sessions useful to their work with people with developmental disability. The sessions functioned to increase participants’ awareness of health and disability services in their communities, facilitate networking between individuals from these services, and provide information on specific topics of interest. They also served to develop a liaison between these communities and the CDDHV, which could provide ongoing resources. Information from services represented at the expo/forums were collated in local service registers and distributed in each community. Barriers to Health Care and Potential Solutions The three major barriers identified by the target communities reflected those reported in the literature. These barriers, and potential solutions, using the sources of the focus group and interview discussions, evaluations of the education sessions, and the literature, are presented in Table 1, below.
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Table 1. Barriers to the delivery of health care to country people with developmental disability and proposed solutions. Barriers Negative attitudes towards people with developmental disability by health care providers.
1
2
3
4
5
6
7
Solutions Increase awareness and knowledge of developmental disability through educational sessions (e.g., by CDDHV), publication of findings in relevant journals (e.g., Australian Family Physician), and sending fact sheets (and other resources from CDDHV). Increase GPs awareness of the health care needs of people with developmental disability, and their confidence in applying their skills to this group, so as to encourage sharing these cases across GPs. Include developmental disability in undergraduate and postgraduate medical curricula, especially in rural and regional schools. Increase the skills of community health or practice nurses in developmental disability and facilitate their working with this group in collaboration with GPs. Increase community awareness of the deinstitutionalisation movement and the rights of people with developmental disability to access community services. Target Commonwealth Government initiatives to developmental disability as a disadvantaged group, thereby increasing awareness of their needs and resources for service provision. Facilitate ongoing contact between individual GPs and Divisions of General practice with local disability services (both government and non-government agencies).
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Table 1. cont. Barriers Accessibility 1. Location
Solutions 1
2
3 4
5 6 7
8
2. Problems obtaining community-based services.
1
2
3
4 5
Target Commonwealth Government Initiatives to increase the number of GPs and allied health services in rural communities. Provide training packages for the staff of local GP surgeries and hospital nursing staff to improve accessibility to health services by people with developmental disability and their carers. Develop the role of local district/community nurses to facilitate access to services Provide training to parents and carers in rural communities in the importance of early and ongoing engagement of GPs in the health care of people with developmental disability (e.g., through regular health checks). Develop and maintain individual health care records that are portable across services. Provide carers with up-to-date inventories of locally available services Promote use of health care protocols that require regular and ongoing attention to specific health issues of people with developmental disability Develop information packages for GPs by state disability services on the health care needs of people with developmental disability and the regular review requirements of their services. Ensure that Commonwealth Government Initiatives aimed at increasing the number of GPs and allied health services in rural communities also target communication between these service providers, and promotion and training in the utilisation of multidisciplinary care plans and case conferencing. Develop policy in government and nongovernment disability services whereby senior staff liaise directly with health care professionals, assisting to develop open communication, shared responsibility and problem solving (i.e., collaboration). Promote strategies for local advocates of people with developmental disability to engage more effectively with local health services. Establish more effective ways of identifying local health care needs and communicating these to the relevant authorities. Maximise the opportunities for regional disability services for and Divisions of General Practice to respond proactively to the health care needs of local people with developmental disability
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Table 1. cont. Barriers 3. Burden on carers
Solutions 1 Increase local respite care. 2 Train support workers in areas of concern (e.g., medication) by ongoing education sessions for government and nongovernment organisations from centres such as CDDHV. 3 Increase collaboration between disability and health care services, using the strategies outlined above. 4 Increase resources to disability services to enable support workers to share the load when clients are hospitalised or in need of medical care. 5 Facilitate the development of the role of Case Manager for health care issues by training GPs in the use of the Medicare Items for Care Plans and Multidisciplinary Case Conferencing. 6 Give GPs a better understanding of the burden on carers and the importance of their role as counselors, medical supports and advocates through placement in rural communities and with disability services. 7 Develop and support local self-help and advocacy networks to help carers through the maze of health care service needs. Conclusions
The project outcomes include the identification of priorities for meeting the health care needs of country people with developmental disability. Strategies to increase the capacity of the targeted communities to address these priorities included (1) educational activities conducted by CDDHV, whose members travelled to each location; (2) activities during those sessions to increase networking amongst local service providers and consumers; and (3) provision of resources, such as fact sheets, local service registers and other forms of information, and the potential for an ongoing collaboration between these communities and CDDHV. Other potential solutions to the barriers identified by the communities were proposed. These solutions include government and locally-driven initiatives. The barriers to the delivery of health care to people with developmental disability appear to be entrenched, and therefore, require solutions that involve long term collaborative efforts within communities in partnership with government, and with specialty centres, such as CDDHV in Victoria, the Centre for Developmental Disability Studies in NSW, and the Developmental Disability Unit in Queensland. Completed: May, 2002 Publication Iacono, T., Humphreys, J., Davis, R, & Chandler, N. (2004). Health care needs of Victorian country people with developmental disability. Research in Developmental Disabilities, 25 (3), 265-284.
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