When Moana Hope describes her stint on the gruelling reality show Survivor as “a good break”, it says a lot about the challenges she faces in her day-to-day life.
“I didn’t have to wake up at 4 am. I didn’t have to manage 100 employees. I was just on an island eating some rice,” the footballer says of the competition that Steve ‘The Commando’ Willis admitted was tougher than he expected.
“Tougher than expected” is a term that could easily be applied to Moana, who has spent the past few years juggling a sporting career with a full-time job, an increasing public profile and the role of carer to her sister, Livinia, AKA Vinny.
Moana and Vinny have always had a very special bond.
(Credit: Photography by Alana Landsberry. Styling by Jamela Duncan.)Moana gently brushes back Vinny’s locks and tenderly whispers something to her little sister, who breaks into a smile and leans into Moana’s affectionate arms.
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“We grew up tight as anything,” Moana says. “She’s my best friend.”
In the warm, bustling house in Melbourne’s inner north that she shares with her new wife Isabella Carlstrom and Vinny, Moana speaks to The Weekly about the latest hurdle her family has had to overcome.
“I was in tears and I didn’t know how to respond to such a thing or how to feel about it,” she says.
The issue was the shock closure of a day program that provided care and education to Vinny, 26. Vinny has the neurological disorder Möbius syndrome, but has defied doctors’ expectations and is now learning life skills and taking TAFE classes. Within a supported program, she volunteers in a primary school canteen on Fridays, making pizzas and zucchini slice.
The program has given her agency and a community.
“She helps push her friends in wheelchairs,” Moana says proudly. “Some of them are non-verbal and wheelchair-bound for life. She gets their lunch out of their bags, puts it on the table, gets their spoon, gets out their bib. She helps. It’s quite beautiful.
As Vinny’s full-time carers and often looking after relative’s pets, you get the sense there’s nothing Moana and Isabella wouldn’t do for family.
(Credit: Photography by Alana Landsberry. Styling by Jamela Duncan.)“I help Bethany,” Vinny says. “She can’t walk, so I push her.”
A few years ago, Moana’s mother, Rosemary’s, health began to decline. Having raised 14 kids in a two-bedroom housing commission house while working at a nursing home, Rosemary was always a devoted mother.
But when she grew ill, she worried Vinny would be unable to fend for herself. Rosemary asked Moana if she’d be Vinny’s full-time carer, and Moana wholeheartedly accepted.
WATCH BELOW: Moana and Isabelle recreate this hilarious scene from The Bachelor. Story continues after video.
Growing up, she and Vinny had always had a special bond, as Moana was one of the few who could understand her when she first began speaking around the age of five.
“I went with her to all her doctors’ appointments. I would translate to her specialist,” Moana says.
Moana and Rosemary agreed that they didn’t want Vinny’s life to be disrupted if something happened to Rosemary, so Vinny moved in with her big sister, who she now calls Mum.
Moana currently plays for the North Melbourne Kangaroos, but previously played for the Collingwood Magpies.
(Credit: Getty)But without a safe place for Vinny to go while Moana and Isabella work, life would be a lot more difficult.
When the Melbourne City Mission announced the imminent closure of its Bridges Day Program, where Vinny spends many happy weekdays, Vinny, Moana and their community were devastated.
“I was heartbroken. I was crying because I knew what this was going to do to Vinny and her friends,” Moana says.
The short notice left some families scrambling for a solution.
For people with disabilities, special needs or autism, it’s not as easy as clicking your fingers and things can change,” Moana says. “It took me four years to teach Livinia how to shower herself – four years repeating the same thing every day and she still hasn’t quite got it. You can’t just take her out of that and say, ‘hey, new school, new program, deal with it’.”
“It doesn’t happen that way because she’ll panic. She’ll get anxiety. It’s part of her disability, part of who she is. When she goes there, she gets to be with her best friend. That’s her place.”
SEE BELOW: Moana made an impassioned Instagram post regarding the effects of the NDIS roll out.
Vinny, however, dealt with the change better than other participants. One mother has agreed to speak on the condition of anonymity – her son has taken the upheaval badly and has regressed significantly.
“He wants to go back to a childlike state so he can be protected,” she says.
Melbourne City Mission has said that group-style support of the kind offered at Bridges is difficult to deliver under the NDIS funding arrangement and that the organisation had no choice but to close its service.
They say they are doing everything they can to support families through the transition, and will support them beyond the closure date.
Never one to take things lying down, Moana decided to act. She published a social media video that showed Vinny’s distress at the announcement. Moana was in tears. Vinny was in tears. She pleaded for help and was inundated with offers.
Her local MP, Peter Khalil, and Shadow Minister for the NDIS, Bill Shorten, from the neighbouring electorate, came on board. They held meetings, started an email chain and they rallied supporters.
“The closure of the Bridges program has been disappointing and unfair to Vinny and Moana and so many participants and loved ones just like them,” said Bill Shorten on the issue.
(Credit: Getty)The issue, Melbourne City Mission says, is not isolated, as many not-for-profits struggle with the transition to the new system.
Melbourne City Mission said the new NDIS funding arrangement makes it impossible to operate Bridges in a way that “retains the essence of the program” and they did what they could to support families to transition to another service, including organising an expo with alternative providers.
Amid Moana and Vinny’s campaigning, disability service provider Onemda saw an opportunity to do some good. The organisation stepped in to try to keep the Bridges community intact, something Moana had been fighting for too.
Moana, Isabella and Vinny.
(Credit: Photography by Alana Landsberry.)“She’s a really strong, proud advocate and doing a great job, trying to gather the troops,” says Simon Lewis, CEO of Onemda.
“Keeping them together is the whole point,” adds Moana. “A sense of community and belonging is crucial to Vinny’s wellbeing, and always has been.”
She explains that the doctors who cared for Vinny when she was a baby praised her loving, involved family for supporting her. “They said [Vinny’s progress] was credited to having such a big family because everyone was so interactive with her.”
In a matter of months, Onemda found a site in Glenroy and set about establishing a new service. From where Moana, Isabella and Vinny sit, the new program is nothing short of a miracle.
“I can’t believe it’s happening, given where we were a month ago,” says Isabella.
Vinny is coping well now, and was thrilled to serve as flower girl at Moana and Isabella’s recent wedding. She even performed a special dance for the happy newlyweds.
“Best day of our lives,” Moana wrote in Instagram.
To read our full interview with Moana, Isabella and Vinny, pick up a copy of the September issue of The Australian Women’s Weekly, on sale now.
The new issue of The Australian Women’s Weekly, featuring Quentin Bryce on the cover, is on sale now.
(Credit: AWW)
