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ALC 15 year strategic plan 2012-2027



ALC 15 year strategic plan 2012-2027


Anindilyakwa Land Council


Anindilyakwa Land Council annual report; Anindilyakwa Land Council strategic plan; Reports; PublicationNT




Made available via the Publications (Legal Deposit) Act 2004 (NT).




Anindilyakwa Land Council (N.T.) -- Periodicals; Aboriginal Australians -- Northern Territory -- Groote Eylandt -- Periodicals

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Anindilyakwa Land Council

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Anindilyakwa Land Council

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ALC 15 year Strategic Plan 6. Goal B: Best Practice Service Delivery 64 GETTING YOUNG There are two types of MJD. One has a fairly stable age of onset (usually around middle age) the Machado type and a type that tends to affect the next generation earlier and earlier, the Joseph type. A research paper published in Archives of Neurology in February 2012, Mutational Origin of Machado-Joseph Disease in the Australian Aboriginal Communities of Groote Eylandt and Yirrkala, confirms Indigenous Australians from Groote Eylandt have the more aggressive Joseph strain and that the origin is likely Asian (rather than Portuguese as previously hypothesised). The implications of this on projected figures and service delivery in Arnhem Land are significant, as with this more aggressive Joseph strain, Groote Eylandt can expect the average age of disease onset to become younger and the disease progression more rapid, and consequently see an increase in the number of people and families affected by the disease in more than one generation at the same time. In stark terms, for communities like Angurugu this means that in 15 to 20 years, up to 150 people will be symptomatic with MJD (i.e. 5% of the population), so it is realistic to project 100 wheelchair users, most of them under 50 years of age. Of most concern to planning the care of people with MJD is the fact that the aggressive anticipation effect experienced by the younger generations means that the informal care networks so heavily relied on in these families will quickly be decimated, necessitating increased reliance on care from outside the family, provided by government and NGO community services. NATIONAL DISABILITY INSURANCE SCHEME (NDIS) In early 2012, the Australian Government introduced a National Disability Insurance Scheme (NDIS) for all Australians. An NDIS will turn the way the government currently caters for disability services on its head. Rather than funding based on historical budget allocations, a funding pool will be based on actuarial (statistically calculated) assessment of need. It will recognise that disability is for a lifetime, and so it will take a lifelong approach to providing care and support. This means that assessment will look beyond the immediate need, and across the course of a persons life. For example, home modifications might be expensive up front, but if they afford a person with significant disability the opportunity of greater independence, or if they mean that a carer can continue to care for their loved one, it is a good investment. While the national focus for the NDIS is providing a choice of service provider for individuals, the reality is that in most remote Indigenous communities there is none or perhaps only one service provider. An NDIS Task Force has been formed and one of the building blocks being examined for the NDIS is Indigenous Disability. The Productivity Commission recommended several options