An Indigenous teen once featured in national disability insurance scheme promotional material was placed in state care after the agency running the NDIS cut his funding package, an inquiry has heard.
The disability royal commission on Monday began five days of hearings in Alice Springs, focused on the experience of the NDIS for First Nations people with disability in remote communities.
The inquiry will investigate the barriers First Nations people face getting on to the NDIS, and then, when they are approved for a package, accessing the support they need.
Among the witnesses was a Warumungu woman, Daisy*, whose three children include 18-year-old Joziah, who lives with quadriplegia and dysphagia.
While Daisy lives in Tennant Creek, Joziah now lives 500km away in Alice Springs, because he was unable to access the support he needed – such as speech therapy and physiotherapy – in the family’s home town.
The inquiry heard Joziah, who uses a wheelchair, had been living in an aged care facility as a child until the establishment of the NDIS.
Joan, who now provides care for Joziah in Alice Springs, said he then became “a bit of a poster boy” for the NDIS. She said he appeared in the agency’s promotional materials and the agency that runs the scheme funded him to live in supported independent living (Sil) close to his family in Tennant Creek.
Joan told the inquiry he was only in the accommodation for 12 months before the NDIA cut his Sil funding.
This meant “he was going to be without a home”, she said.
“And consequently they made a mandatory report to Territory Families and had him removed from his mother effectively, from that Sil accommodation,” Joan said.
Under arrangements agreed by the NDIA and the Northern Territory’s Department of Families, the NT government agreed to fund the accommodation supports the NDIA had withdrawn.
But Joan said this could only occur if Joziah was placed into state care. She regarded Joziah’s experience as “part of a stolen generation”.
The inquiry heard Joziah, who is a “sociable person”, became isolated at the home once he was placed in care.
“[The department] were the ones that controlled the people being able to come to the house or not go to the house,” Joan said.
After the care order expired, Joziah then moved to Alice Springs where he receives care from Joan, at Daisy’s request. Joan is not Aboriginal.
In Alice Springs, Joziah has access to allied health supports, takes part in cultural activities and he also works at Vinnies and a food bank.
But Daisy said that she wished there were sufficient support services in Tennant Creak to allow Joziah to live near his immediate family. He has been in Alice Springs for about two and a half years.
Daisy, who herself has a disability, said that for some time she had struggled to get around in an ageing wheelchair which had cracks in the arms.
She has recently received an electric scooter, but it struggles to deal with the outback terrain.
The inquiry heard on one occasion the bumps in the ground caused the scooter’s battery to malfunction, leaving Daisy stranded until her family came to assist her.
There is also no NDIS office in the town of 3,000 people, meaning it is difficult to organise repairs for her disability aids.
Daisy added that the town’s public housing and buses were not fitted with ramps for people in wheelchairs.
At 31 March 2022, there were 37,313 NDIS participants who were First Nations people with disability and about 10% of those live in remote locations.
The issue of “thin markets” – a shortage of services in particular parts of the country – is one of the longstanding issues that affects First Nations NDIS participants in remote communities.
The inquiry will look at the NDIA’s cultural competence and whether the agency has been effective in reducing barriers to support for First Nations people with disability.
It will also investigate if some First Nations people with disability in remote and very remote areas are not being correctly assessed.
Data shows they are less likely to be granted access to the scheme than non-First Nations applicants.
The commission’s chair, Ronald Sackville QC, said the NDIA was aware of the difficulties for First Nations people with disability and the inquiry would hear how the agency is seeking to address these issues.
He noted that “distrust” among some First Nations people towards institutions, which arose from both personal and historical experiences”, was also a factor.
“This includes … the history of colonisation and dispossession, racism, and intergenerational trauma that compound the distrust associated with endemic poverty in some areas and lack of decent housing in many remote communities,” Sackville said.
The hearing continues.
*Pseudonyms given by the royal commission
