News Story of Hope: How an AFLW star has to learn how to explain the unexplainable

Story of Hope: How an AFLW star has to learn how to explain the unexplainable

Moana Hope (right) has spoken candidly about the effect the pandemic has had on her sister, Lavinia. Photo: Instagram
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Former AFLW footballer Moana Hope doesn’t have the luxury of being able to explain the coronavirus pandemic to her 27-year-old disabled sister.

Hope is still teaching Lavinia – who was only the second person in the world to be born with Moebius syndrome – how to brush her teeth and helping her when she wears her top inside out.

As one of 14 siblings, Lavinia couldn’t understand why she wasn’t allowed to see her brothers or sisters, or her mum, or go to the special day program that she normally attends five days a week.

The disruption COVID-19 caused to Lavinia’s daily routine took an unprecedented toll on her mental health.

She went from waking every day at 6am sharp to not wanting to get out of bed.

“We thought for the first time ever is Vinny [Lavinia] depressed?” Hope said during a Q&A session for National Carers Week.

“She just didn’t want to hang out with us any more. She just wanted to lay in bed and stay there.”

Lavinia would become quite agitated and break down crying sometimes.

One of the biggest challenges for Hope, who is her sole carer, was knowing how to “take her out of that state of mind of being really sad and upset”.

“Every day she would ask can she go back to school the next day. Every day she would ask can she go see mum,” Hope said.

Lavinia lives with a rare neurological condition. Photo: Instagram

Romola Hollywood, director of policy and advocacy at People with Disability Australia (PWD), which gave evidence at the Disability Royal Commission, said people living with a disability have been significantly and adversely affected by COVID-19.

Of the 180 people with disabilities and 24 carers and family members PWD surveyed in May, 41 per cent had less support from the NDIS, while almost half had less support in general.

“This has been extremely challenging for people with disability who rely on these supports for daily living,” Ms Hollywood said.

Even with telehealth services, those with an intellectual disability don’t always know how to use that technology or might struggle to interact with someone over a Zoom call, said Peter Baldwin, clinical research fellow and clinical psychologist at Black Dog Institute.

A year ago, it might have only taken a couple of weeks for someone to find a psychiatrist or psychologist. Now it’s taking months – and these are people who don’t have an intellectual disability, Dr Baldwin said.

“I know people who have asked favours of me in terms of referrals. I haven’t been able to find them anyone who can see them,” he said.

“Somebody with an intellectual disability, and a very busy carer, they’re going to find that even harder.”

Hope said people like her sister, Lavinia, are “left to the side” and are “forgotten about or not as important”.

This was echoed by the chief executive of Carers Australia, Liz Callaghan, who said the funding support for carers hasn’t been enough to help them pay their bills or stop them from going into debt.

Because of that, their own personal health starts to suffer and they’re not able to provide a high level of support and care, Ms Callaghan said.

‘Begging’ for more help

As part of the National Mental Health and Wellbeing Pandemic Response Plan, the government allocated $3 million to Carer Gateway to boost its services which include counselling, respite care, skills courses and self-guided coaching for carers.

Ms Callaghan said: “If we know that there are 2.65 million carers in Australia [and] there’s $3 million being thrown at their mental health, that’s just over $1 each.”

She said carers are “crying out” for help to look after their mental health.

Ms Callaghan said Carers Australia has heard many cases of families who might be caring for three children with disabilities that can’t access telephone counselling or peer-to-peer support because help is often only available during business hours.

“We’ve had a number of carers contact us expressing frustration that they can’t actually access the supports that they want,” she said.

From having reduced access to in-home respite care to being reluctant to seek help from support services for fear of contracting the coronavirus, carers have had to do much of “the heavy lifting” but have been “completely invisible to governments”, Ms Callaghan said.

The funding directed at carers has not been near enough. Photo: Getty

Just four hours before the federal budget was announced, a carer contacted Carers Australia “begging” for more funding because she did not have enough money to support herself through the pandemic, Ms Callaghan said.

The government allocated another $500,000 to Carers Australia to encourage those caring for people with a mental illness to connect with others who are going through the same and seek mental health support from online resources.

Ms Callaghan said “it’s a very small amount of money” particularly given mental illness is just one of a range of issues that carers are looking after.

“Some carers don’t even get five minutes in the day to look after their own mental health, let alone the person they’re caring for,” she said.

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