My question is to the Minister for Indigenous Affairs, Senator Scullion. Can the minister inform the Senate how the government is honouring the minister’s commitment to support people with Machado-Joseph Disease?
I thank Senator McKenzie for the question. Machado-Joseph Disease, or MJD, is a rare neurodegenerative condition that is, sadly, prevalent amongst Aboriginal people in parts of the Northern Territory. Recently, I declined to approve an inappropriate Northern Territory Aboriginal Benefits Account grant of $10 million that the former minister had promised to the MJD Foundation. This would have been in addition to a similar grant of over $6 million in
Aboriginals Benefit Account funding made in 2010.
The MJD Foundation said this grant would cover operational costs for years to come. The Aboriginals Benefit Account is Aboriginal money. This is their
own discretionary money. It is a legacy fund that is invested on behalf of Aboriginal people to earn interest to support one-off Aboriginal projects. The $10 million for this grant was to be invested elsewhere to generate interest for recurrent operational costs. My department has indicated it is not aware of any other example of such special treatment.
Whilst I declined to approve this inappropriate grant, I made a commitment that I would find alternative funding to ensure that the sufferers of MJD did not miss out because of the financial mismanagement of the former government. I have done so. I have been able to offer the foundation up to $500,000 a year, for up to three years, to cover the direct costs of therapeutic services to help sufferers and their families. This money comes from the Commonwealth government— not from Aboriginal discretionary funds—as it should.
We are in discussions with the MJD Foundation and I hope they will accept this offer. However, if they do not, we will stick with our commitment and
find another provider. Aboriginal people in remote communities must be able to expect that they will receive the same assistance that you and I would expect in the cities and towns across this country.
Mr President, I ask a supplementary question. Can the minister inform the Senate how he plans to engage with people who have Machado-Joseph Disease and make a difference to their situation?
Tomorrow I will be visiting Groote Eylandt, where a number of the sufferers of this disease reside. I will be meeting with the Anindilyakwa Land Council on Groote Eylandt. The land council is the largest contributor to the Aboriginals Benefit Trust Account as a consequence of their industrial export of rutile. They contacted my office to express concern about the inappropriate use of the Aboriginals Benefit Trust Account and they expressed support for the solution we have been able to offer. I will continue to pursue mainstream funding for people with this disease, including through the National
Disability Insurance Scheme. I should not have to remind everyone that the best way to pursue this and identical issues is through mainstream health or
disability funding rather than asking Aboriginal people to use their own funds.
Mr President, I ask a further supplementary question. Will the minister inform the Senate whether he agrees with the previous approach to the funding of the MJD Foundation?
The fact that all of the sufferers of this condition are Aboriginal people does not necessarily mean we should use Aboriginal money to fund it. If a person in Sydney needs a wheelchair, we look to the health and disability sectors to provide for that. Why should it be any different for Aboriginal people in their communities? Why should we be asking them, in effect, to provide their own money rather than the Commonwealth providing the money as it would
anywhere else across this country?
The grant from the Aboriginal Benefits Account that was promised by the former minister would have been a bit of a workaround to provide recurrent
funding from an Aboriginal fund that was clearly not set up to provide for this. I did not support pulling out Aboriginal money from the Aboriginals
Benefit Trust Account for the MJD Foundation as a substitute for mainstream health funding. It is not its purpose and would not maintain the integrity
and sustainability of the Aboriginals Benefit Trust Account. But the principal issue is that we should not ask Aboriginal people to pay for something which
every other Australian would take for granted is paid from mainstream funding.
Download media release:
2014-03-06 QT MJD.pdf