close the Gap

WILL THEY BE LEFT BEHIND BY THE NDIS?

In all the brouhaha over the so called “leadership challenge that wasn’t” and Prime Minister Gillard’s announcement of her new Cabinet line up, a big and important news story has gone largely ignored.

Last week, the Australian Parliament passed the National Disability Insurance Scheme legislation. It’s now L.A.W. Law.

That is undeniably good news for thousands of people across the country even though in its first phase it will remain experimental. The NDIS will change the daily lives and future prospects of thousands of people with a disability in this country. In the trial period – 20,000 people with disability, along with their families and carers, in NSW, Victoria, South Australia, Tasmania and the ACT will benefit.

But as the trial NDIS offices open up in five regions of Australia, there’s one group that some say will probably not benefit as they should. 

 

PETROL SNIFFING DEATH INQUESTPhoto by Karen Michelmore. AAP via The Conversation.
 

Indigenous Australia faces disability levels upwards of 50 per cent. That is significantly higher that the incidence of disability in the broader Australian community – estimated to be between 17 and 20 per cent -and there are many reasons for this.

Aboriginal and Torres Strait Islander people are the most disadvantaged group in the country on all measurement scales – health, education, mortality.

Year after year, the health outcomes for indigenous Australians improve only minimally and in some areas of the country, not at all.  With on the ground health care facilities so poor, what’s being done is struggling to make any impact. And the problems have been compounding for decades.

The impact on families where there is a disability has been devastating. Diabetes for example, unchecked can claim a limb. And diabetes might afflict more than one member of a family.

There are cultural issues too. In vast number, Aboriginal and Torres Strait Islander people haven’t historically identified themselves as disabled. 

As June Reimer, a Dunghetti woman from the north coast of NSW and State Manager for the Aboriginal Disability Network of NSW says, they don’t see disability as disability. They see the disabled in their midst as simply members of the family who need a bit of extra help.

They’re accustomed to dealing alone with the needs of their family members – which usually extend far beyond what mainstream Australia defines as family, to aunts, uncles, cousins, grandparents. Often these extended families live in the same house. There can be up to 30 people living in one house.

Worse, as June Reimer puts it, there is an overwhelming fear in indigenous communities of authority.

“They mistrust the government,” she says. “ It comes right from the beginning. First of all, you weren’t even allowed to be a citizen of your own country until 1967. That’s not long ago.”

“My mother and grandparents weren’t allowed to go to school. I wasn’t a citizen at 9 years old, of my own country, where I was born.”

And the scars of the Stolen Generation run deep.

“Even me,” says June, “I come into these communities with my fancy hire care, they all just think I am with DOCS (Department of Community Services) and I’m here to take children.”

 

close the GapFrom the Close The Gap campaign on Indigenous health. Jason Malouin/OxfamAus. 
 

Though the national apology delivered by former Prime Minister Kevin Rudd went a way to healing some wounds, the fear has remained.

So getting word to some indigenous communities – and in particular the more remote ones– that there is now a scheme, the NDIS, which can help them get better health outcomes if one or more of their family members has a disability, is going to be tough.

June Reimer also thinks that the NDIS, though a worthwhile and much needed scheme, is couched in white Anglo terms. She’s sat through conferences and meetings to discuss the NDIS and seen the problem first-hand.

“You got the powers that be, sit up here, no one thinks: if every service provider brought an Aboriginal carer along (if they knew one to begin with), they would go back to their community and share,” says Reimer.

“They’d be able to say do you know we can get A, B and C and do you know the NDIS going to happen?”

She thinks if the messengers were from the communities, they’d be heard and trusted. But she’s not aware of any attempt in the consultations that have taken place all over Australia of anyone going to into Aboriginal communities to ask them what they want or need. That seems extraordinary given the level of disability they suffer.

“I’ve been going out and talking about it but no-one knows about it. They haven’t got a clue,” she says.

The NSW Aboriginal Disability Network has put in two submissions for funding to get people out into the communities. They’re waiting for a response. If the money comes, it will also be used to collate a database so there is a record of who has a disability and what their needs might be. Ongoing care will then be easier to provide.

She’s hoping the fact that more and more families have access to technology might make a difference. But even that has problems that will make results slow and difficult to deliver.

“Most of them have computers at home now,” says Reimer. “Centrelink had a thing a few years ago where old computers were fixed up and people could buy them for $250 and people could pay them off with their pensions,” she says.

But most can’t afford internet access when it is available in their areas. So, says June Reimer, they will need to be encouraged to go to a library until the national broadband network reaches them, to keep up with what the NDIS can offer them if they decide to trust it.

The title of the scheme isn’t helping foster trust.

Aboriginal people hear the word “insurance” and believe, understandably, that a premium needs to be paid. Getting people to understand that the scheme doesn’t work like a typical insurance scheme is proving difficult.

“At the moment,” says June Reimer, “we have this scheme and that’s great but the problems are so big, we might as well not have it.”

“Disability” is a new conversation for Australia’s Aboriginal and Torres Strait Islander people. And as June Reimer puts it, these are communities that struggle to put food on the table.

Learning a new language is just another hassle.

 

MORE ARTICLES BY MONICA ATTARD

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Will The UN Deliver for Women?

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Abortion. What can voters expect?

 

*Monica Attard OAM is a five-time Walkley award-winning Australian journalist – including the Gold Walkley Award for Excellence in Journalism 1991. She was the host of the ABC’s PM, the World Today and Media Watch. She spent 28 years at the ABC, leaving to start up The Global Mail where she was, until recently, the Managing Editor. In 1997, Monica published a book entitled Russia: Which Way Paradise? documenting her time there as a foreign correspondent. You can follow her on Twitter: @attardmon.

 

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16 Comments

  • Reply March 26, 2013

    The Huntress

    Having spent some time in the Kimberley and working with Indigenous people in healthcare I can see the difficulties there will be in implementing these measures. Ms. Reimer is absolutely correct in her assertion that training Indigenous carers from their own communities to convey this message would be ideal. It would also be low cost and effective. This would be a wonderfully appropriate role for Aboriginal Health Workers, the absolute diamonds of rural and remote healthcare.

    We can work towards closing the gap, but we need to listen to the communities with needs to discover what they perceive their needs to be. It is not for the government to presume what a communities needs are. Genuine engagement to understand this will help improve trust in the authorities, deliver results that are tangible to the community, prevent wastage of resources and result in a happier, healthier community. I will be watching the NDIS rollout with interest.

  • Reply March 26, 2013

    Annie Also

    Perfectly said, The Huntress. Agree!
    (I too will be watching the NDIS rollout with …’personal’ …interest. I am curious to see if there will be any ‘carrots and sticks’ or a group left behind or falling through cracks or the power of ‘breaching’ if compliance is not met etc….If is sounds too good to be true usually it is not real. Skeptical? Sure am.)

  • Reply March 26, 2013

    deb

    thanks Monica

  • Reply March 26, 2013

    deb

    BTW,slightly off NDIS but – at my P&C meeting last night I was passed a brilliant disability information resource produced by the ACT P&C council with a small govt grant. We all wondered why govt’s can’t do this? It was simple, clear and packed with useful info. Not just names and ph numbers but what each group/agency does and how. And it fit in one hand. It needs copying for every state/region, and probably on online, updatable version.

  • Reply March 26, 2013

    Sandra

    Wow. What an informative piece. A perspective I had not considered despite my other concerns about this scheme. The first being the whole scheme had been cooked up by people who have the time to be in talks about disability and caring. Those who are really at the crux of this matter will not only have trouble accessing and even understanding this system, but they have had no opportunity for informational input regarding the formation of the scheme. Such as Aboriginal or other low socio-economic groups. Irony at its best.

  • Reply March 26, 2013

    Monica

    Thanks Sandra and Deb and Annie and The Huntress. It really is a very important issue. Thanks for engaging with it. Monica

  • Reply March 26, 2013

    Benison O'Reilly

    Important article. I know a little about a limited area of disability: autism in the Indigenous community is underdiagnosed and way undertreated. There are initiatives to produce culturally sensitive information and education programs for Indigenous families affected by autism but obviously much more needs to be done.

  • Reply March 27, 2013

    ro.watson

    I remember learning about theoretical NDIS schemes in law school~ the main benefit being for all those injured or disabled who could not make a common law claim for personal injuries because there was “no fault”. From what I can gather the scheme is in pilot form, and has bipartisan support, and waits for funding in the next budget. In the light of this article it will be interesting to see, what, if any, monies are appropriated for community education in the pilot areas~ and beyond?

  • Reply March 27, 2013

    Rhoda

    I despair sometimes at how long it will take to get real help for our indigneous people living in remote areas. They live on the periphery of our lives. Many don’t have the dignity of a proper education.

    In practical terms how will, for instance an Aboriginal child with a disability, be provided with support – if asked for. What sort of support will it be? Practical help or just advice? How far will this support reach – into the camps?

    And what is happening with these children now. In 1968 when Fred Hollows visited one of the outback camps he said, “It was like something out of the medical history books,” he said, “eye diseases of a kind and degree that hadn’t been seen in western society for generations. The neglect this implied, the suffering and wasted quality of human life were appalling.”

    And that was only eye disease I wonder if much has changed since and if public benevolent foundations like his would do a better job of it then our various lumbering governments have been doing for the the last century.

  • Reply April 6, 2013

    Liz

    June Reimer is right on the mark and if such experienced and well placed Aboriginal women have serious concerns regarding the NDIS providing real benefits for Aboriginal people with disabilities, their families and carers, then June should be supported in her advocacy efforts to change this system. Another important dimension to this human rights issue, is Aboriginal people with intellectual disability and cognitive impairment cycling in and out of the criminal justice system – police, courts and prison.

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  • Reply April 18, 2013

    michelleb

    and the NDIS scheme has recently been rebranded as Disability Care- another example of a barrier, potentially making it harder for Aboriginal people from a lived experience and cultural perspective to be drawn to or relate their own experience to a scheme with a word in it that is not easliy understood, to a system that suggests it will be helpful. Not near enough regard for our First Peoples current and historical experiences.

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