Making every Australian count: challenges for the National Disability Insurance Scheme (NDIS) and the equal inclusion of homeless Aboriginal and Torres Strait Islander Peoples with neurocognitive disability
Clare Townsend A B C E , Paul White D , Jennifer Cullen A C , Courtney J. Wright A B and Heidi Zeeman BA Synapse, 1/262 Montague Road, West End, Qld 4101, Australia. Email: jcullen@synapse.org.au; cwright@synapse.org.au
B Menzies Health Institute Queensland, Griffith University, Logan Campus, University Drive, Meadowbrook, Qld 4131, Australia. Email: h.zeeman@griffith.edu.au
C James Cook University, James Cook Drive, Townsville City, Qld 4811, Australia.
D Queensland Government Department of Communities, Child Safety and Disability Services, Specialist Disability Services Assessment and Outreach Team, Russell Street, South Brisbane, Qld 4101, Australia. Email: paul.white@communities.qld.gov.au
E Corresponding author. Email: ctownsend@synapse.org.au
Australian Health Review 42(2) 227-229 https://doi.org/10.1071/AH16229
Submitted: 12 October 2016 Accepted: 12 January 2017 Published: 30 March 2017
Journal compilation © AHHA 2018 Open Access CC BY-NC-ND
Abstract
This article highlights the dearth of accurate evidence available to inform the National Disability Insurance Scheme (NDIS) regarding the extent and nature of neurocognitive disability amongst homeless Aboriginal and Torres Strait Islander people. Without accurate prevalence rates of neurocognitive disability, homeless Aboriginal and Torres Strait Islander people are in danger of not being counted by the NDIS and not receiving supports to which they are entitled. Addressing this knowledge gap is challenged by a range of factors, including: (1) the long-term effect of profound intergenerational disenfranchisement of Aboriginal and Torres Strait Islander people; (2) Aboriginal and Torres Strait Islander cultural perspectives around disability; (3) the generally unrecognised and poorly understood nature of neurocognitive disability; (4) the use of research methods that are not culturally safe; (5) research logistics; and (6) the absence of culturally appropriate assessment tools to identify prevalence. It is argued that an accurate evidence base that is informed by culturally safe research methods and assessment tools is needed to accurately guide the Commonwealth government and the National Disability Insurance Agency about the expected level of need for the NDIS. Research within this framework will contribute to the realisation of a truly inclusive NDIS.
Additional keywords: consumers, drug and alcohol, epidemiology, health policy, Indigenous health.
References
[1] United Nations. Convention on the rights of persons with disabilities. 2006. Available at: http://www.un.org/disabilities/documents/convention/convoptprot-e.pdf [verified 19 September 2016].[2] Barton R, Robinson T, Llewellyn G, Thorncraft K, Smidt A. Rural and remote perspectives on disability and mental health research in Australia: 2000–2013. Adv Ment Health 2015; 13 30–42.
| Rural and remote perspectives on disability and mental health research in Australia: 2000–2013.Crossref | GoogleScholarGoogle Scholar |
[3] Wiesel I, Habibis D. NDIS, housing assistance and choice and control for people with disability. AHURI Final Report No. 258. Melbourne: Australian Housing and Urban Research Institute; 2015.
[4] Nicholls R. ‘Every Australian counts’: The campaign for the National Disability Insurance Scheme 2011. Available at: http://www.ethos.org.au/online-resources/engage-mail/every-australian-counts [verified 21 September 2016].
[5] Productivity Commission. Disability care and support: draft report. Volumes 1 and 2. Canberra: Productivity Commission; 2011. Available at: http://www.pc.gov.au/inquiries/completed/disability-support/report [verified 21 September 2016].
[6] Russell LM. Closing the gap on Indigenous disadvantage: an analysis of provisions in the 2013–14 Budget and implementation of the Indigenous Chronic Disease Package. Sydney: Menzies Centre for Health Policy, University of Sydney; 2013. Available at: https://web.archive.org/web/20140302114745/http://www.naccho.org.au/download/aboriginal-health/2013-14IndigenousBudgetandICDP.pdf [verified 19 September 2016].
[7] Biddle N, Yap M, Gray M. CAEPR Indigenous Population Project: 2011 census papers. Paper 6: disability. Acton: Centre for Aboriginal Economic Policy Research, The Australian National University; 2013. Available at: http://caepr.anu.edu.au/sites/default/files/cck_indigenous_outcomes/2013/02/2011_CensusPaper_06_Disability.pdf [verified 20 September 2016].
[8] Glasson EJ, Sullivan SG, Hussain R, Bittles AH. An assessment of intellectual disability among Aboriginal Australians. J Intellect Disabil Res 2005; 49 626–34.
| An assessment of intellectual disability among Aboriginal Australians.Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD2MzlvVGgsg%3D%3D&md5=35fce705564a4dca5669cda5f4765cc7CAS |
[9] Biddle N. Improving Indigenous health: are mainstream determinants sufficient? In B. Hunter, N. Biddle, editors. Survey analysis for Indigenous policy in Australia: Social science perspectives. Canberra: ANU ePress; 2012. pp. 65–78.
[10] Steering Committee for the Review of Government Service Provision. Overcoming Indigenous disadvantage: key indicators 2011. Canberra: Productivity Commission; 2011.
[11] Stephens A, Cullen J, Massey L, Bohanna I. Will the National Disability Insurance Scheme improve the lives of those most in need? Effective service delivery for people with acquired brain injury and other disabilities in remote Aboriginal and Torres Strait Islander communities. Aust J Public Admin 2014; 73 260–70.
| Will the National Disability Insurance Scheme improve the lives of those most in need? Effective service delivery for people with acquired brain injury and other disabilities in remote Aboriginal and Torres Strait Islander communities.Crossref | GoogleScholarGoogle Scholar |
[12] Thrift AG, Cadilhac DA, Eades S. Excess risk of stroke in Australia’s Aboriginal and Torres Strait Islander populations. Stroke 2011; 42 1501–2.
| Excess risk of stroke in Australia’s Aboriginal and Torres Strait Islander populations.Crossref | GoogleScholarGoogle Scholar |
[13] Henderson S. Dementia in Aboriginal Australians. Aust N Z J Psychiatry 2010; 44 869–71.
| Dementia in Aboriginal Australians.Crossref | GoogleScholarGoogle Scholar |
[14] American Psychological Association (APA). Neurocognitive disorders. In: Diagnostic and statistical manual of mental disorders. 5th edn. 2013. Available at: http://dsm.psychiatryonline.org/doi/abs/10.1176/appi.books.9780890425596.dsm17 [verified 23 September 2016].
[15] Green CR, Mihic AM, Nikkel SM, Stade BC, Rasmussen C, Munoz DP, Reynolds JN. Executive function deficits in children with fetal alcohol spectrum disorders (FASD) measured using the Cambridge Neuropsychological Tests Automated Battery (CANTAB). J Child Psychol Psychiatry 2009; 50 688–97.
| Executive function deficits in children with fetal alcohol spectrum disorders (FASD) measured using the Cambridge Neuropsychological Tests Automated Battery (CANTAB).Crossref | GoogleScholarGoogle Scholar | 1:STN:280:DC%2BD1MvivFSqtg%3D%3D&md5=3668bb551e93e321c881a215fbf32243CAS |
[16] Kodituwakku PW. Neurocognitive profile in children with fetal alcohol spectrum disorders. Dev Disabil Res Rev 2009; 15 218–24.
| Neurocognitive profile in children with fetal alcohol spectrum disorders.Crossref | GoogleScholarGoogle Scholar |
[17] Lafler J. Expanding a Drosophila model of fetal alcohol spectrum disorder: a forward genetic screen for developmental ethanol exposure phenotypes. Master’s thesis, San Jose State University, San Jose, California; 2015.
[18] Leonard J. Aboriginal justice: the challenges of FASD & implications for the legal system. (Law Society of South Australia) 2016; 38 38–9.
[19] Beer A, Baker E, Mallett S, Batterham D, Pate A, Lester L. Addressing homelessness amongst persons with a disability: identifying and enacting best practice. Canberra: Department of Families, Housing, Community Services and Indigenous Affairs; 2012. Available at: www.melbourneinstitute.com/downloads/hilda/Bibliography/Other_Publications/2012/Beer_etal_Homelessness-and-Disability-FINAL-REPORT-2-2.pdf [verified 24 September 2016].
[20] Australian Institute of Health and Welfare (AIHW). Australia’s health 2014. Australia’s health series no. 14. Catalogue no. AUS 178. Canberra: AIHW; 2014.
[21] Purdie N, Dudgeon P, Walker R, editors. Working together: Aboriginal and Torres Strait Islander mental health and wellbeing principles and practice. Barton: Commonwealth of Australia; 2010.
[22] First People’s Disability Network. Ten-point plan for the implementation of the NDIS in Aboriginal communities; 2013. Available at: http://fpdn.org.au/ten-point-plan-for-the-implementation-of-the-ndis-in-aboriginal-communities/ [verified 19 September 2016].
[23] Smith L. Decolonising methodologies research and Indigenous Peoples. London: Zed Books; 1999.
[24] Memmott P, Chambers C. Indigenous homelessness in Australia: an introduction. Parity 2010; 23 8–11.
