HOPE CONQUERS ALL: AFL star Moana Hope fights for her sister’s happiness
Moana Hope has never been afraid of fighting for what’s right – particularly when it comes to her family. The AFL women’s league star tells Genevieve Gannon about her most recent battle for the happiness of her beloved sister, Vinny.
When Moana Hope describes her stint on the gruelling reality TV 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 even Steve ‘Commando’ Willis admitted was tougher than he expected.
“Tougher than expected” is a term that could easily be applied to Moana. Three years ago, the 31-year-old found herself thrust into the media spotlight when she was picked to be a marquee player for the debut season of the AFL women’s league and reporters zeroed-in on her remarkable personal story.
Raised with 13 siblings, Moana left home to become a full-time carer to her dying father who she described as her best friend and the driving force behind her passion for AFL. Her gutsiness won her legions of fans and ambassadorships, but the spotlight wasn’t always kind.
She has been bullied on social media, where she has an active presence and where her candour reveals a woman
whose loyalty to her family governs everything she does.
In the warm, bustling house in Melbourne’s inner north that she shares with her partner, Isabella Carlstrom, and sister Livinia (or Vinny), she 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 who, as we speak, covers her face with her light brown hair, freshly blow-dried and curled for the photoshoot. 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.
“We grew up tight as anything,” Moana says. “She’s my best friend.”
Vinny, 26, has the neurological disorder Möbius syndrome, but she 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.”
“I help Bethany,” Vinny says. “She can’t walk, so I push her.”
The day program has also helped Moana and Isabella balance their busy lives. Their home is the base for a traffic management company they both work for in addition to their other commitments – Isabella is a model; Moana a dedicated footballer. When The Weekly visits there are four dogs racing up and down the living area.
Moana and Isabella have taken in three of them while Isabella’s brother is on holiday. You get the sense there’s nothing they wouldn’t do for family.
A few years ago, Moana’s mother, Rosemary’s, health began to decline. Having raised 14 kids in a twobedroom 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. 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.
“Vinny’s lucky because she has us,” Moana says. “If she didn’t, my mum would be struggling.”
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.
Melbourne City Mission announced on June 7 that they would be shutting Bridges in September.
The short notice left some families scrambling for a solution and feeling betrayed by an organisation that operates in complex disability care.
“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.”
When Vinny heard about the closure, she became withdrawn and sad. “She’d just go into her room and not want to talk to anyone, which is really unlike her,” says Isabella.
Vinny, however, dealt with the change better than other participants. One mother, who agrees to speak on the condition of anonymity, says Melbourne City Mission has made families feel
“like we’re cattle”. 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. “He has been hitting his head
“I was crying, I knew what this would do to Vinny.”
with his fists. He has not displayed that behaviour since he was a child. He has been weeing on himself and soiling himself up to four or five times a day.”
As she describes how hard the change has been, her eyes fill with tears. “To see your child who you’ve worked so hard to teach independence skills … For him to regress that much… For him to try to hurt himself and for me to have Valium on hand to give him so he stops injuring himself – they’re not going to see that and they don’t care.”
In their defence, 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.
Vinny’s friend’s concerned mother says service providers have had five years to adapt to the new funding model. “It’s not like something that happened yesterday,” she says.
Incensed at the impact this was having on Vinny’s friends and their families, 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 former Labor leader stressed that all service-providers need to ensure, as the NDIS is rolled out, that the people it’s designed to help don’t fall through the cracks. “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,” Bill said.
The issue, Melbourne City Mission says, is not isolated, as many not-forprofits struggle with the transition to the new system.
“This is an issue affecting thousands across Australia,” the organisation said.
Following her post, Moana was flooded with messages from people who saw their own powerlessness reflected in her video. Some spoke of having to fundraise to cover the cost of therapy, others of the long wait for basic equipment like wheelchairs. One woman whose brother lost his funding summed up the frustration many feel: “Lucky you’re famous because no one would’ve picked this story up otherwise, hey!”
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. But the mother who speaks to The Weekly insists the new system is better, but more complex. This sentiment is echoed by Simon Lewis, the CEO of disability service provider Onemda. “You’ve got to really do the work to understand operating in it successfully,” he says. Amid Moana and Vinny’s campaigning, 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. “She’s a really strong, proud advocate and doing a great job, trying to gather the troops,” Simon says.
“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.”
The Hopes’ sense of community was contagious. Despite not having much money, the family shared what they had. A favourite memory of Moana’s is watching her father, Gary, pack a giant picnic lunch to take to Vinny’s special school in Melbourne’s north. “He’d put on lunches. They had lamingtons and hot dogs. He used to do it every couple of weeks and we’d go to help,” she says.
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. The disruption has left families distressed and angry but Onemda wants life to return to normal for Vinny and her friends as soon as possible. The mother of the high-needs son says Onemda’s plan is welcome. But, along with Moana, she worries about other families who’ve become collateral damage as the sector struggles with the change in how disability services are funded. “Why aren’t we putting the people who need it first? I don’t get it,” Moana says.
Vinny is coping well now, and looking forward to being a flower girl at Moana and Isabella’s imminent wedding. The ceremony was planned for November, but has been brought forward to August after worrying news about Rosemary.
“Mum had to go to hospital,” Moana says. Rosemary’s heart condition was worsening. “She wasn’t sure she’d make it to our wedding day.”
Family members are trying not to worry, but also look forward to a celebration in which Rosemary will walk Moana down the aisle. “It’s just going to be a day of love,” Moana says.
With busy lives that include plans to become parents as soon as they can, there’ll be no time for a honeymoon, but it’s not something they see as important. Vinny, Isabella and Moana just want to enjoy the one thing that truly matters.
“We’re going to concentrate on family,” Moana says.