The experiences of people with disability and their families/carers navigating the NDIS planning process in regional, rural and remote regions of Australia: Scoping review.
Aboriginal health
allied health
disability
health policy
rural health
Journal
The Australian journal of rural health
ISSN: 1440-1584
Titre abrégé: Aust J Rural Health
Pays: Australia
ID NLM: 9305903
Informations de publication
Date de publication:
Aug 2023
Aug 2023
Historique:
revised:
07
05
2023
received:
28
07
2022
accepted:
29
05
2023
medline:
7
8
2023
pubmed:
27
6
2023
entrez:
27
6
2023
Statut:
ppublish
Résumé
Australia's National Disability Insurance Scheme (NDIS) was launched in 2013 to provide financial support packages for people with disability to purchase supports and services to enhance independence. People with disability are required to develop a plan with the National Disability Insurance Agency (NDIA), the government department responsible for managing the NDIS. This scoping review aims to ascertain the level of research into people's experience of the NDIS planning process in these geographic areas. Research publication databases were searched using a specific search string to identify research about people with disability and their families/carer's experiences of the NDIS planning process in regional, rural and remote regions of Australia. The Mixed Methods Appraisal Tool (MMAT) was adopted to appraise the quality of the research publications. Research publications focused on Aboriginal and Torres Strait Islander people were additionally appraised using the Aboriginal and Torres Strait Islander Quality Appraisal Tool developed by the Centre for Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange. A thematic synthesis of the publications' contents was undertaken to ascertain people with disabilities and carers experience of the NDIS planning process. Ten (N = 10) research papers were found that met the inclusion criteria. Two papers were policy reviews and reported on the improvements of the NDIS planning process since its conception. The analysis found the research archive focused on five themes: (1) healthcare workforce and NDIA staff; (2) NDIS package holders and carers lack of awareness of the NDIS; (3) cultural/socio-economic barriers; (4) travel funding; and (5) emotional burden of the NDIS planning process. There are limited papers available that explore people's experiences of the NDIS planning process in regional, rural and remote regions of Australia. This systematic review illuminates the difficulties, barriers and concerns of people with disability and their carers about the planning process.
Sections du résumé
BACKGROUND
BACKGROUND
Australia's National Disability Insurance Scheme (NDIS) was launched in 2013 to provide financial support packages for people with disability to purchase supports and services to enhance independence. People with disability are required to develop a plan with the National Disability Insurance Agency (NDIA), the government department responsible for managing the NDIS. This scoping review aims to ascertain the level of research into people's experience of the NDIS planning process in these geographic areas.
METHODOLOGY
METHODS
Research publication databases were searched using a specific search string to identify research about people with disability and their families/carer's experiences of the NDIS planning process in regional, rural and remote regions of Australia. The Mixed Methods Appraisal Tool (MMAT) was adopted to appraise the quality of the research publications. Research publications focused on Aboriginal and Torres Strait Islander people were additionally appraised using the Aboriginal and Torres Strait Islander Quality Appraisal Tool developed by the Centre for Excellence in Aboriginal Chronic Disease Knowledge Translation and Exchange. A thematic synthesis of the publications' contents was undertaken to ascertain people with disabilities and carers experience of the NDIS planning process.
RESULTS
RESULTS
Ten (N = 10) research papers were found that met the inclusion criteria. Two papers were policy reviews and reported on the improvements of the NDIS planning process since its conception. The analysis found the research archive focused on five themes: (1) healthcare workforce and NDIA staff; (2) NDIS package holders and carers lack of awareness of the NDIS; (3) cultural/socio-economic barriers; (4) travel funding; and (5) emotional burden of the NDIS planning process.
CONCLUSION
CONCLUSIONS
There are limited papers available that explore people's experiences of the NDIS planning process in regional, rural and remote regions of Australia. This systematic review illuminates the difficulties, barriers and concerns of people with disability and their carers about the planning process.
Types de publication
Systematic Review
Journal Article
Review
Langues
eng
Pagination
631-647Subventions
Organisme : Australian Research Council
Informations de copyright
© 2023 The Authors. Australian Journal of Rural Health published by John Wiley & Sons Australia, Ltd on behalf of National Rural Health Alliance Ltd.
Références
Australian Government Productivity Commission. Disability care and support draft inquiry report. Canberra: Productivity Commission; 2011.
Productivity Commission. Disability care and support: inquiry report. Canberra: Australian Government Publishing; 2011.
Productivity Commission. National Disability Insurance Scheme (NDIS) costs. Canberra: Productivity Commission; 2017.
National Disability Insurance Agency (NDIA). Building the national disability insurance scheme progress report: year one [Internet]. Canberra: NDIA; 2014.
National Disability Insurance Agency. Annual report 2020-21. Canberra: NDIA; 2021.
United Nations General Assembly. Convention on the rights of persons with disabilities: resolution adopted by the general assembly. New York: United Nations, 2007 January A/RES/61/106; 2007.
Tune D. Review of the National Disability Insurance Scheme act 2013: removing red tape and implementing the NDIS participant service guarantee. Canberra: Department of Social Services; 2019.
Wark S. How do we support genuine decision-making for people with intellectual disability outside of the 'big smoke'? Intellect Disabil Aust. 2020;41(2):5-8.
National Disability Insurance Agency. Operational guidelines. Canberra: NDIA; 2020.
Gilroy J, Dew A, Barton R, Ryall L, Lincoln M, Taylor K, et al. Environmental and systemic challenges to delivering services for Aboriginal adults with a disability in Central Australia. Disabil Rehabil. 2020;43:2919-29.
Hummell E, Venning A, Foster M, Fisher KR, Kuipers P. A rapid review of barriers and enablers of organisational collaboration: identifying challenges in disability reform in Australia. Aust J Soc Issues. 2022;57(2):441-57.
Johnson E, Lincoln M, Cumming S. Principles of disability support in rural and remote Australia: lessons from parents and carers. Health Soc Care Community. 2020;28(6):2208-17.
Wark S. Does intellectual disability research consider the potential impact of geographic location? J Intellect Dev Disabil. 2018;43(3):362-69.
Dintino R, Wakely L, Wolfgang R, Wakely KM, Little A. Powerless facing the wave of change: the lived experience of providing services in rural areas under the National Disability Insurance Scheme. Rural Remote Health. 2019;19(3):5337.
Dew A, Barton R, Gilroy J, Ryall L, Lincoln M, Jensen H, et al. Importance of land, family and culture for a good life: remote aboriginal people with disability and carers. Aust J Soc Issues. 2020;55(4):418-38.
Dew A, Bulkeley K, Veitch C, Bundy A, Lincoln M, Brentnall J, et al. Carer and service providers' experiences of individual funding models for children with a disability in rural and remote areas. Health Soc Care Community. 2013;21(4):432-41.
Olney S, Dickinson H. Australia's new National Disability Insurance Scheme: implications for policy and practice. Policy Des Pract. 2019;2(3):275-90.
Cortese C, Truscott F, Nikidehaghani M, Chapple S. Hard-to-reach: the NDIS, disability, and socio-economic disadvantage. Disabil Soc. 2020;36:883-903.
First People's Disability Network (Australia). Response to the productivity commission position paper on National Disability Insurance Scheme (NDIS) costs. Redfern: FPDN; 2017.
Russo F, Brownlow C, Machin T. Parental experiences of engaging with the National Disability Insurance Scheme for their children: a systematic literature review. J Disabil Policy Stud. 2020;32:67-75.
Mavromaras K, Moskos M, Mahuteau S, Isherwood L. Evaluation of the NDIS: final report. Adelaide: Flinders University; 2018.
Collings S, Dew A, Dowse L. Support planning with people with intellectual disability and complex support needs in the Australian National Disability Insurance Scheme. J Intellect Dev Disabil. 2016;41(3):272-6.
Collings S, Dew A, Dowse L. “They need to be able to have walked in our shoes”: what people with intellectual disability say about National Disability Insurance Scheme planning. J Intellect Dev Disabil. 2019;44(1):1-12.
Trounson JS, Gibbs J, Kostrz K, McDonald R, Peters A. A systematic literature review of Aboriginal and Torres Strait Islander engagement with disability services. Disabil Soc. 2020;37:1-25.
Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19-32.
Australian Bureau of Statistics. Australian statistical geography standard (ASGS): volume 5 remoteness structure. Canberra: ABS; 2011. Report No.: 1270.0.55.005.
Sandelowski M, Barroso J. Finding the findings in qualitative studies. J Nurs Scholarsh. 2002;34(3):213-9.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.
Braun V, Clarke V. Conceptual and design thinking for thematic analysis. Qual Psychol (Washington, DC). 2021;9(1):3-26.
McCalman J, Campbell S, Jongen C, Langham E, Pearson K, Fagan R, et al. Working well: a systematic scoping review of the indigenous primary healthcare workforce development literature. BMC Health Serv Res. 2019;19(1):767.
Hong QN, Fàbregues S, Bartlett G, Boardman F, Cargo M, Dagenais P, et al. The mixed methods appraisal tool (MMAT) version 2018 for information professionals and researchers. Educ Inf. 2018;34(4):285-91.
Hong QN, Gonzalez-Reyes A, Pluye P. Improving the usefulness of a tool for appraising the quality of qualitative, quantitative and mixed methods studies, the mixed methods appraisal tool (MMAT). J Eval Clin Pract. 2018;24(3):459-67.
Hong QN, Pluye P. A conceptual framework for critical appraisal in systematic mixed studies reviews. J Mixed Methods Res. 2019;13(4):446-60.
Pace R, Pluye P, Bartlett G, Macaulay AC, Salsberg J, Jagosh J, et al. Testing the reliability and efficiency of the pilot mixed methods appraisal tool (MMAT) for systematic mixed studies review. Int J Nurs Stud. 2012;49(1):47-53.
Pluye P, Gagnon M-P, Griffiths F, Johnson-Lafleur J. A scoring system for appraising mixed methods research, and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed studies reviews. Int J Nurs Stud. 2009;46(4):529-46.
Harfield S, Pearson O, Morey K, Kite E, Glover K, Canuto K, et al. The Aboriginal and Torres Strait Islander quality appraisal tool: companion document. Adelaide South Australian Health and Medical Research Institute: Adelaide, SA; 2018.
National Health and Medical Research Council. Values and ethics: guidelines for ethical conduct in Aboriginal and Torres Strait Islander Health Research. Canberra: Australian Government Publishing; 2003.
Loadsman JJ, Donelly M. Exploring the wellbeing of Australian families engaging with the National Disability Insurance Scheme in rural and regional areas. Disabil Soc. 2020;36:1449-68.
Barr M, Duncan J, Dally K. Parent experience of the National Disability Insurance Scheme (NDIS) for children with hearing loss in Australia. Disabil Soc. 2020;36(10):1663-87.
National Disability Insurance Agency RaEB. The second independent assessment pilot evaluation report. Canberra, ACT: NDIA; 2021.
Lloyd J, Moni K, Cuskelly M, Jobling A. Engaging with National Disability Insurance Scheme Planning: perspectives of parents of an adult with intellectual disability. J Intellect Dev Disabil. 2020;45(3):254-63.
Boaden N, Purcal C, Fisher K, Meltzer A. Transition experience of families with young children in the Australian National Disability Insurance Scheme (NDIS). Aust Soc Work. 2021;74:294-306.
Lakhani A, McDonald D, Zeeman H. Perspectives of the National Disability Insurance Scheme: participants' knowledge and expectations of the scheme. Disabil Soc. 2018;33(5):783-803.
Howard A, Blakemore T, Johnston L, Taylor D, Dibley R. 'I'm not really sure but I hope it's better': early thoughts of parents and carers in a regional trial site for the Australian National Disability Insurance Scheme. Disabil Soc. 2015;30(9):1365-81.
Dew A, Vaughan P, McEntyre E, Dowse L. 'Our ways to planning': preparing organisations to plan with Aboriginal and Torres Strait Islander people with disability. Aust Aborig Stud. 2019;2:3-18.
Keane S, Smith T, Lincoln M, Fisher K. Survey of the rural allied health workforce in New South Wales to inform recruitment and retention. Aust J Rural Health. 2011;19(1):38-44.
Australian Government Department of Health and Ageing. Report on the audit of health workforce in rural and regional Australia. NSW: Department of Health and Ageing; 2008.
Veitch C, Battye K. Rural health workforce: planning and development for recruitment and retention. In: Liaw S-T, Kilpatrick S, editors. A textbook of Australian rural health. Canberra: Australian Rural Health Education Network; 2008. p. 113-27.
Australian Institute of Health and Welfare (AIHW). Disability support for indigenous Australians. 2021. In AIHW (ed) Australia's Welfare 2021, AIHW, Australia. [cited 2023 Jun 15]. Available from: https://www.aihw.gov.au/reports/australias-welfare/disability-support-for-indigenous-australians
Gilroy J. The participation of Aboriginal persons with disability in disability services in New South Wales, Australia [unpublished doctoral thesis on the Internet]. Sydney: University of Sydney; 2012.
Avery S, First Peoples Disability Network. Culture is inclusion: a narrative of Aboriginal and Torres Strait Islander people with disability. Sydney: First Peoples Disability Network; 2018.
Jessup B, Bridgman H. Connecting Tasmanian National Disability Insurance Scheme participants with allied health services: challenges and strategies of support coordinators. Res Pract Intellect Dev Disabil. 2021;9:1-16.
Gallego G, Dew A, Bulkeley K, Veitch C, Lincoln M, Bundy A, et al. Factors affecting retention of allied health professionals working with people with disability in rural New South Wales, Australia: discrete choice experiment questionnaire development. Hum Resour Health. 2015;13(1):22.
Barr M, Duncan J, Dally K. Parent experience of the national disability insurance scheme (NDIS) for children with hearing loss in Australia. Disabil Soc. 2021;36(10):1663-87.