At 23, Tanesha Bolte-Hile is a proud Biripi woman, a talented artist and a diehard Home and Away fan.
But almost a decade ago, she was diagnosed with a progressive disease that is slowly taking her independence. Friedreich's ataxia affects her entire nervous system. Tanesha has trouble concentrating and speaking. She fatigues easily.
Now, Tanesha uses a wheelchair full-time and has round-the-clock care.
"[When I got diagnosed], they said there was no cure," she said. "I just had to go from there."
Tanesha is one of dozens of clients across the Hunter now receiving care from an Aboriginal support worker. She lives with her nan, Yvonne and her Uncle Norm, and she is cared for three days a week by an Indigenous support worker, Edie.
"Edie is like my big sister," Tanesha said. "She's amazing. I've only known her for two years and it feels like a lifetime. I wouldn't change it for the world. I love her so much."
Tanesha has been supported by non-Aboriginal workers in the past, who she was "comfortable" with, but she said having 'mob who understand her cultural and care needs was a game-changer'.
"Edie and I just connected straight away," Tanesha said.
She was paired with Edie, who works for Aboriginal-owned Justiz, through Awabakal services who connect mob for caregiving needs. The support work is funded by the NDIS.
"For Tanesha, [connection to mob] is very important," Awabakal support coordinator Darren said. "Our roles don't switch off. You get a connection with your clients and they become part of your family."
Creating systems for culturally-appropriate care can be a challenge. Darren said services run the risk of becoming "too big too quickly" and not understanding client needs.
"My role is to make sure we have the right services in that meet Tanesha's disability needs," Darren said. "We've got occupational therapy, we've got physio, we've got speech.
"Tanesha's case is a little bit unique given that her case is progressive. Unfortunately at the moment, her therapies have got to come first," Darren said.
Tanesha hasn't stood on her own for four years but during certain physio exercises, she can. She said sustaining her strength was important for being able to visit family and not something she could have done without Edie.
The care has been a comfort for Yvonne, too, who said having her granddaughter live with her was something she "wouldn't change for the world".
"Having the care there is great. Sometimes it takes a while for the pressure to uplift off myself, but with Norm my partner, everything is great. He's a big part of Tanesha's life as well. We couldn't do it without Edie. The four of us work together."
