A mother resorted to rummaging through a rubbish tip to find spare parts for her daughter's wheelchair, the disability royal commission was told this week.
The First Nations woman was among many in remote communities who spoke of trying to navigate a system with no "cultural competence".
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability was also told the "one size fits all" approach of the National Disability Insurance Scheme (NDIS) wasn't working and showed "a complete lack of understanding" of the lives of First Nations people with disability.
The royal commission travelled to Alice Springs to hear firsthand from First Nations people with disability about the barriers they faced to get the appropriate supports from the NDIS.
Approximately 66,000 First Nations people live with severe disability. About 38,500 are NDIS participants and 10 per cent of those live in remote and very remote communities.
Twenty-eight witnesses, including 13 with lived experience, gave evidence about their lives in West Arnhem Land, Thursday Island, Fitzroy Crossing, Tennant Creek and Alice Springs.
One of the themes that emerged was the difficulty of being a wheelchair user or needing a mobility device in a remote community.
"A wheelchair suitable for the suburbs of Sydney, Melbourne or Brisbane does not do well on gravel of the outback of Australia," senior counsel assisting Patrick Griffin told the inquiry.
Witness Ronita Jackamarra, a Yawuru woman from Fitzroy Crossing, gave evidence that she'd been waiting years for a new wheelchair and three years for a hoist to assist her to get into vehicles.
Her mother, Topsy, said there was always "trouble" with her daughter's wheelchair and once when it broke down, she drove around the community looking for a discarded wheelchair to use for parts.
"I went out to the tip... and we got that wheelchair down off the pile of rubbish," Topsy said.
The mechanic used the parts to fix her daughter's chair and "kept the other parts to fix other people's chairs in the community."
Topsy said people did not understand how hard it was living in a remote location with "limited services and limited supports."
"We always struggle," Topsy said.
'One size doesn't fit all'
Photos were shown to the inquiry of a wheelchair with a broken armrest being used by 'Daisy', a Warumungu woman living in Tennant Creek, Northern Territory.
Large cracks had opened up in one armrest and she said it had been like that for "a long time."
Daisy gave evidence that she wore jumpers to protect her skin as the armrest was "scratchy."
Another Tennant Creek resident, Emily Sherwood, who uses an electric scooter, told the hearing its tyres were "damaged quickly" by the terrain.
She often had to travel on the town's sealed main street, the Barkly Highway, which was "dangerous" as trucks and other vehicles sometimes didn't slow down.
Ms Sherwood, who has been non-verbal since a stroke in 2003, gave evidence with a solicitor verbalising her physical responses to the questions.
She said she had been waiting a long time for equipment — such as special plates and cutlery and a non-slip placemat — that would make her life "more independent."
Ms Sherwood said the NDIS needed to know that "one size doesn't fit all" and her life had "gotten worse."
The inquiry heard from 52-year-old Paulette who lives with a rare degenerative condition.
She moved to Darwin from Gunbalanya in West Arnhem Land last August to access NDIS disability services.
Away from her children, husband and Country, Paulette said she "felt so sad."
While she has an "NDIS house," Paulette's family is not allowed to come and stay with her.
"My husband... has to sleep in the long grass if he comes to Darwin," Paulette said.
She told the inquiry she had missed out on bush foods and ceremony and thought she would return home.
Emily Carter from the Marninwarntikura Women's Resource Centre in Fitzroy Crossing said people should not have to leave their connection to Country and culture "just to get a service."
"This is a human rights issue I'm talking about here... we need to raise the voices of the families (of people with disability) that are in desperate situations."
'Lack of cultural competency'
Pat Turner, the chief executive officer of peak body the National Aboriginal Community Controlled Health Organisation, said the needs of Aboriginal and Torres Strait Islander people were not taken into account when developing the NDIS.
She said it had resulted in a system that had "created accessibility and gaps at best, and exploitation at worst."
Ms Turner said the NDIS assessment process was open to "unconscious bias" because of a lack of "cultural competency" in the organisation and scheme.
"If you don't have that cultural respect and understanding throughout the organisation you are not going to have the returns on the investment."
Ms Turner said improvements for the lives of First Nations people with disability were being made through the Remote Community Connectors Program (RCCP).
Representatives from the Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women's Council (NPYWC) gave evidence about the lives of people in the NPY Lands, where 6,000 people live in 25 communities over an area of 350,000 square kilometres of remote South Australia, WA and the NT.
Kim McRae, manager of the Tjungu team that looks after disability and aged care, said poverty was endemic in the NPY Lands and was the biggest issue when accessing the NDIS.
"So many of our families live in overcrowded housing. It's often very difficult for people to prioritise the NDIS plan when every day is a struggle just to survive," she said.
Ms McRae said the NDIS needed to recognise that people in communities lived in a "family centred" way, with their families providing care and support.
"We think that we should be able to use the NDIS plan to actually support that whole family to continue providing that care," Ms McRae said.
"There are very few services and very few supports in local communities."
Ms McRae said when First Nations people with disability were forced to live away from Country, in centres like Alice Springs, it "created sadness" and there needed to be money in NDIS plans to allow them to return home "to take part in funerals and other cultural business."
When they advocated for return to Country trips, Ms McRae said they had been told "the NDIS does not pay for family holidays", which "missed the point completely."
The hearing was told that NDIS plans written in English were "nonsensical" and "largely inaccessible and incomprehensible" to people on the lands.
Deputy chairperson Mrs Margaret Smith said people in the NPY Lands did not have access to computers or understand how to use them.
Mrs Smith said she had never seen NDIS documents translated into traditional languages and not even the interpreters could explain them.
Representatives from the First Peoples Disability Network (FPDN) told the hearing that there was no comparable word for "disability" in traditional communities.
NDIA responds
Representatives of the National Disability Insurance Agency (NDIA) faced the hearing on the final two days, after listening to the week's evidence.
Scott McNaughton, the NDIA's general manager of national delivery, agreed that elements of the scheme were "complex."
"There is a need to make the scheme easy to understand and the need to make the scheme community led," Mr McNaughton said.
"Some of the infrastructure that has been put in place needs to be reviewed to make it more culturally appropriate."
On efforts to deal with language barriers, Mr McNaughton pointed to the RCCP, which has employed existing agencies in communities to provide services.
First Nations commissioner Andrea Mason said there needed to be a "transformative" approach in remote areas with a "critical mass of workers" coming from the community.
"We need more local people working in the system."
