” Life on a remote Indigenous settlement in central Australia, surrounded by red dust and scorched country may be tough. But it’s even tougher if you’re sick, old or living with a disability.
“Some people with disabilities who are in a wheelchair are pretty much living under their carport because they don’t even have enough support to put in a ramp [out the front of their house.
“Or, they may be stuck sitting around all day because no there is no access to an appropriate wheelchair to get up a bush track. So they can’t get to where they need to go and sometimes can’t leave the house.”
I believes a cultural barrier between Indigenous communities and government systems is preventing people with disabilities living in remote Australia from getting the basic services they need. That’s because there’s no actual word for disability in most Indigenous languages so the notion of ‘disability’ and ‘disability services’ gets lost in translation.
Tracy Barrell, former Paralympian and spokesperson of the First Peoples Disability Network.
Clockwise from top: Carol Gilligan, Sandra Windy, Annette Wilyuka and Cora Meruntji from Waltja. (Photo supplied by Waltja Tjutangku Palyapayi Aboriginal Corporation) See second article below
” As my research has shown, the factors that impact on Indigenous people’s access to disability specific services are not just geographical. They also include the ways in which disability is conceptualised in Indigenous communities as well as lack of trust for mainstream services and lack of community connections.
Many Indigenous people don’t engage with disability support programs because of the stigma associated with the mainstream definition of disability adopted by government and non-government agencies.
My research has also highlighted the fact that Indigenous people often focus on a person’s strengths, which is contrary to the clinical deficit model of disability adopted by the current service system. “
John Gilroy ARC Research Fellow in Indigenous Health, Disability and Community Development, University of Sydney Full Article here
On July 1 2016, the National Disability Insurance Scheme (NDIS) moved from a trial phase to a full national roll-out. In this series on Understanding the NDIS, we explore how the scheme works, why Australia needs it, and the issues to be addressed before eligible Australians can receive the benefits they are entitled to.
The National Disability Insurance Scheme (NDIS) allows Australians with a disability to choose which agencies or people they wish to collaborate with to help achieve their goals.
For Indigenous people, there are many positives to this scheme. It provides the opportunity to address the identified shortfalls of the former institutionalised service system, some of which uniquely impact Indigenous people.
For instance, if an NDIS participant is not satisfied with a support worker or an agency, they can recruit a different person or withdraw their funding and transfer to another agency. This will enable Indigenous people to access those supports that are culturally appropriate for them and their needs.
The growing Indigenous disability rights movement has fostered more involvement in the planning and development of the NDIS. But there is still a need to acknowledge those who feel their voices are not being heard by the government.
I have previously expressed my frustration with the National Disability Insurance Agency (NDIA) – the agency responsible for overseeing the NDIS – for its lack of transparency on the NDIS rollout, with limited evidence that it is meeting the needs of Indigenous people.
Unrepresentative participation
As of March 2016, nearly 30,000 people with disabilities were participating in NDIS trial sites, around 5% of them Indigenous. The latest National Aboriginal and Torres Strait Islander Social Survey reported that 45% of Indigenous Australians aged 15 years and over said they had experienced a disability, and nearly 8% needed assistance with core activities (such as self-care or mobility) some or all of the time.
Added to this is the high rate of chronic health conditions that lead to physical impairments and disability, such as renal disease, middle ear diseases and glaucoma; as well as issues of low cognitive ability among many Indigenous children.
While adequately estimating the NDIS eligibility rate in the Indigenous population is problematic, the 5% does not seem to be representative of the rates of disability in Indigenous communities.
While the reasons for a lack of participation are many and complex, the underlying problem is access. A 2008 report showed that nearly half of Indigenous people with severe core activity limitations identified problems in accessing generic and specialist services.
As my research has shown, the factors that impact on Indigenous people’s access to disability specific services are not just geographical. They also include the ways in which disability is conceptualised in Indigenous communities as well as lack of trust for mainstream services and lack of community connections.
Many Indigenous people don’t engage with disability support programs because of the stigma associated with the mainstream definition of disability adopted by government and non-government agencies.
My research has also highlighted the fact that Indigenous people often focus on a person’s strengths, which is contrary to the clinical deficit model of disability adopted by the current service system.
Challenges of remote Australia
The state of disadvantage in Indigenous communities presents a range of problems that exist outside of the NDIS’s scope and objectives.
There are many Indigenous communities where basic housing and utilities are either limited or absent. As such, many Indigenous people with disability have their energies focused on addressing the basics of day-to-day living.
The NDIA has been promoting the NDIS model as one that expands personal choice when it comes to the services and support people with disabilities can access. Yet individual choice requires service and support opportunities to exist in local communities. Limited opportunities, especially in remote communities, equates to limited choice for those on NDIS plans.
The costs to deliver supports and services to remote and very remote communities can be astronomical when compared with metropolitan regions. Research into remote service delivery conducted by the National Disability Services identified workforce shortages further inhibited service growth and development.
In remote regions, staff often have to travel hundreds of kilometres to deliver services to people. The distance between the regional centre of Alice Springs to another town in Central Australia, Tennant Creek, is 500km.
There is limited evidence to assess whether the NDIS can effectively and efficiently provide equitable opportunities for those living so far away from regional centres.
Research shows more than 13% of Indigenous adults have provided unpaid assistance to people with a disability, such as relatives; the highest number of these are in very remote communities. Establishing a system that enables people to recruit family members needs more discussion throughout the scheme’s rollout.
Self-managed funds
According to the First People’s Disability Network, the peak body representing Indigenous Australians with a disability, many Indigenous people need accessible support and training to self-manage their NDIS plans.
If we consider the language diversity among Indigenous communities, options for training in managing personalised NDIS plans may be limited for those with English as a second or third language.
Further, operating in a market-based system requires adequate access to information and skills in budgeting and book-keeping. Indigenous people who are socially isolated and don’t have either this information, or the skills or resources with which to seek help, may find these tasks difficult.
The NDIA will need to further explore these challenges as they plan and implement culturally responsive training and support programs for those who wish to self-manage their packages.
The principles of the World Health Organisation’s twin-track approach should be adopted in the roll-out of the NDIS. Broadly speaking, this approach aims to build specialist, targeted disability programs and supports for Indigenous people (such as Indigenous community controlled organisations) while simultaneously considering their needs in all generic policies, initiatives and programs.
The NDIS provides us an opportunity to address the gaps between Indigenous and non-Indigenous people with disabilities. But this should run parallel to government spending on specialist services and community controlled organisations.
You can read previous stories on groups likely to miss out under the NDIS, and the risk to support services for parents with newly diagnosed children with disability.
What would your life be like if you lived in a remote community in central Australia? How would you fare if you developed a disability or chronic disease?
Life on a remote Indigenous settlement in central Australia, surrounded by red dust and scorched country may be tough. But it’s even tougher if you’re sick, old or living with a disability.
“Some people with disabilities who are in a wheelchair are pretty much living under their carport because they don’t even have enough support to put in a ramp [out the front of their house],” says Tracy Barrell, former Paralympian and spokesperson of the First Peoples Disability Network.
“Or, they may be stuck sitting around all day because no there is no access to an appropriate wheelchair to get up a bush track. So they can’t get to where they need to go and sometimes can’t leave the house.”
Barrell believes a cultural barrier between Indigenous communities and government systems is preventing people with disabilities living in remote Australia from getting the basic services they need. That’s because there’s no actual word for disability in most Indigenous languages so the notion of ‘disability’ and ‘disability services’ gets lost in translation.
“There are so many different types of disabilities and [many people in remote Indigenous communities] can’t differentiate between a brain injury or a mental illness because ‘that’s just Mary’. They don’t see disability and everyone helps to look after that person.
“But that also means they can’t access support. They don’t understand that they have to say ‘this person has cerebral palsy or mental health issues’ to access government help.”
Barrell is hopeful that the situation will change once the National Disability Insurance Scheme (NDIS) rolls out from this month and people start to get the services they request and need.
“For our mob, the conversation about the NDIS has only just started in the last year and is filtering down. So when people who have never received any services or transport, find out about the NDIS and when I tell them to start writing their wish-lists of the things they could have in their life to improve their standard of living, they think they have won the lotto.”
“They don’t understand that they have to say ‘this person has cerebral palsy or mental health issues’ to access government help.”
Executive director of Waltja Tjutangku Palyapayi Aboriginal Corporation, Irene Nangala tells me that accessing seniors’ services in her home town of Kintore, situated around 530 kilometres west of Alice Springs, isn’t quite as desperate.
The remote location of Kintore (Walungurru) has its own health clinic and aged care workers help relatives to care for the elderly at home, in the community.
“The families make the bed, cook supper for them, and make breakfast,” says Nangala. “Sometimes if the old people want to sleep outside, they sleep outside because they all help to make a fire for them.”
But one real problem is that many of the aged care staff are ‘work for the dole’ volunteers: No pay means no income and the continuation of poverty, poor housing conditions and bad diets for many.
It’s also important to recognise that ageing means something different in this community. The Australian Institute of Health and Welfare, ‘older’ Indigenous Australians are considered to be those aged 50 and over, not 65-plus, because of the life expectancy gap between Indigenous and non-Indigenous Australians.
Kate Lawrence, Waltja Management Support Worker, explains that although some elders are aged well over 70 – who grew up on bush tucker – are fighting fit, many others aged around 50 are not in such good helath.
“A lot of the older people are getting heart problems and they can’t do exercise and can’t stay healthy,” says Lawrence. “It’s really hard for people to afford to eat healthy food and no one’s got much money.
“People need to go out to hunt to keep feeding people but they need a car and petrol. The conditions of housing are really hard for people. I think people here deal really well with a tough situation.”
“A lot of the older people are getting heart problems and they can’t do exercise and can’t stay healthy.”
Kidney disease is also quite common throughout the community of 400 Indigenous residents. Kidney Health Australia states that the incidence of end stage kidney disease (ESKD) for Aboriginal and Torres Strait Islander people is 20 times higher for those living in remote and very remote areas of Australia, compared with non-Indigenous peoples. According to a report on the health of people from Kintore, the prevalence of ESKD in the town’s Pintupi Aboriginal group is 40 times higher than in the average Australian population.
But with only four dialysis chairs available at the local health clinic, most renal patients have to live the majority of the year in Alice Springs in order to access life saving dialysis services.
“The chairs aren’t only for people at Kintore but for the mob all over community,” says Lawrence. “It’s really hard for renal patients to come in and stay in a hostel in Alice. They can’t bring family to live with them when they are here so they are usually here by themselves. They are lonely and it’s really disruptive to family.”
Nangala, aged 54, is one of Kintore’s many seniors forced to leave home to receive treatment. Diagnosed with kidney disease around four years ago, she requires dialysis three times a week. So she lives most of the year in a hostel in Alice Springs, at a subsidised cost, so she can receive the treatment she needs to stay alive and travels to Kintore every few months whenever a chair becomes available.
“I am on a dialysis machine and I have to stay in Alice Springs,” Nangala says. “I dilate and after that, I feel a little sick. So I have to go straight to bed and have a rest.”
Nangala adds that although it’s nice to be in the city and have time off from the duties of being a grandparent, she longs for home and misses feeling connected to community.
“Sometimes I want to go back and see my family. The grandchildren, they worry for me when I am in Alice Springs. It’s lonely when family goes away.
“We need something better for old people.”
Women story telling and singing in Kintore, Northern Territory. (Photo supplied by Waltja Tjutangku Palyapayi Aboriginal Corporation)
The community needs connectingIt was this hunt for ‘something better’ and a greater sense of connectedness that lead Nangala and the other Waltja Tjutangku Palyapayi directors to create a temporary solution.
The Aboriginal organisation, governed by senior Aboriginal women from remote communities across central Australia, will run a four-day festival, for older people and those with disabilities this September, to reconnect Indigenous people who have been excluded from community because of poor health, age or disability.
The idea is that around 200 seniors and Indigenous people with disabilities from central Australia’s most remote communities will be brought into participate in The Waltja Aged and Disability Festival, at a bushland camp east of Alice Springs.
“There’ll be a lot of making fire and telling stories,” says Nangala. “There’ll be a lot of lot of laughing, crying, singing and dancing too.”
It’s the sixth time the corporation has held the festival since 1999, as it can only ever be run when the group has enough money to fund it.
“[In past festivals], we’ve had lots of old people sleeping there and making fire,” she adds. “It was so lovely to see the old people. They were so happy together.
“People come from many places, a long way away. We bring everyone in to have a celebration of those older people and people with disabilities. They normally don’t meet as they can’t travel across to community without help.
“There’ll be a lot of making fire and telling stories. There’ll be a lot of laughing, crying, singing and dancing too.”
There’ll also be pampering and information sessions about NDIS services available to Indigenous communities like Kintore.
Barrell, a proud Indigenous woman with a disability, says she’ll also be attending.
“The festival will bring like-minded people together to have yarn ups and make connections that they’ve never made before,” says Barrell. “The way it’s been organised, you’ve got time. You don’t have to worry about your transport, home care coming or going or any of your daily struggles.
“The event is all about being able to be yourself. We’ll be able to just sit back and actually be a person.”