On the latest episode of NDIS Know-how, the host of Yarning Disability – a podcast for Aboriginal and Torres Strait Islander people with disability – shares how the sector can support this community.
Why is the National Disability Insurance Scheme (NDIS) failing Indigenous communities? According to Bernard Namok Jr, a community advocate for the First Peoples Disability Network, the scheme needs a lesson in listening.
“The thing I’ve found here in Far North Queensland is that people assume you know about the NDIS,” says Bernard, who helps to support his brother, a new NDIS participant, to live independently in Cairns. “They don't let you ask questions or give you time to dwell on things that they've said.”
Image: Bernard Namok Jr on St Pauls in the Torres Strait
Such was the case for Bernard’s mother, Bakoi Namok, while trying to transition Bernard’s brother on to the scheme. “I could see the frustration and stress,” says Bernard. “English is a second language for my mum… A worker from Queensland Health here in Cairns was forcing my mum into signing a form that she didn’t understand.”
Bernard’s brother has rheumatic heart disease, a systemic immune condition that, last year, saw his support needs drastically increase. “Prior to that I had no knowledge - or just a basic knowledge, I guess - to do with the NDIS, through radio broadcasting and whatever segments that I had on my show that had to do with NDIS,” says Bernard.
Before moving to Cairns to help his family, for 17 years Bernard was living in the Northern Territory, hosting a radio show called Mornings with Bala B. “Bala B was my radio name,” says Bernard. “It was a popular show up in Darwin and we broadcast it out to 30 remote communities across the Top End, from Port Keats all the way to Borroloola.”
Bernard’s radio career started back on Thursday Island in the Torres Strait, when he was offered a job at the local station straight out of school. In recent years he’s made radio and film documentaries about his father, the late Bernard Namok Sr, who designed the Torres Strait Islander flag in 1992.
Bernard Jr’s latest broadcasting project is a collaboration with the First Peoples Disability Network – Yarning Disability, the first-ever podcast dedicated to Aboriginal and Torres Strait Islander people with disability.
“We wanted to showcase First Nations stories of people living with a disability,” says Bernard. “It’s a chance for people to tell their story about the struggles they’ve had to face, and what help or advice they can give to other families that may be struggling. [First Nations people with disability] know now that there is a platform for them so they can share their story and give voice to the voiceless. They just want to be heard.”
Yarning Disability exists to raise awareness of how First Nations peoples experience the disability sector and NDIS. As Bernard says, “we’re also talking to service providers so they can offer that help out to people living [in] remote [communities].”
The most recent National Aboriginal and Torres Strait Islander Health Survey found that more than one in 10 of the 66,000 First Nations people with profound or severe disability live in remote or very remote locations.
Last year, the Disability Royal Commission heard the NDIS had failed Indigenous people in remote areas. A report into the scheme’s performance found that more than 80 per cent of NDIS participants from Ngukurr, an Aboriginal community on the banks of the Roper River in the Northern Territory’s southern Arnhem Land, didn’t know who their support co-ordinator was. Out of the 24 participants interviewed, only three knew about the NDIS.
“Back on Thursday Island, people still don't have an understanding about the NDIS,” says Bernard. “[NDIS providers] need to get out more to families and [spread] information around the community about what they do and what services they can provide to families. Because like I said, they assume that we know things before coming into this world, but we don’t.”
In an upcoming episode of Yarning Disability, Bernard interviews “a young fella from the Torres Strait”, he says on NDIS Know-how. “He wanted to start up a service to support families that come down from the island to Cairns – to be that person, to go with them to any appointments. So he started a support group here in Cairns just focusing on families from the Torres Strait Islands coming down so they have somebody to talk to.
“This young fella used to work with the NDIS here in Cairns. I think having First Nations support organisations, especially around the NDIS, can explain things better for mob here in Far North Queensland so they can have a better understanding around what they can do for their family that are living with a disability.”
Hear more from Bernard on the latest episode of NDIS Know-how
Melanie Dimmitt
Melanie Dimmitt is a freelance journalist, author and broadcaster. Since her debut book, Special, was published by Ventura Press in 2019, Melanie has written, spoken, podcasted and advocated far and wide for disability families. Creator and host of the award-winning NDIS Know-how and Tubie Talks podcasts, Melanie also publishes an annual magazine, The Blend, for the tube-feeding community.