Mia Boonen will never forget the devastation her stepbrother's death caused.
"It resulted in my entire family having this shock wave through us," she said.
"Losing him was this almost biblical before-and-after moment, Old Testament, New Testament of our lives."
Ms Boonen was seven at the time and her stepbrother was a baby.
"My family was trying to raise me, but also battling very intense grief and trauma," she said.
"We were having to find a way through to keep functioning, to keep jobs, to have food on the table. It was just really, really hard."
Some of Ms Boonen's family members still struggle with post-traumatic stress disorder and other mental health challenges.
"I grew up slowly realising how that tragedy had rippled through my family and their mental health. I realised I needed to be a circuit breaker," she said.
"I needed to make a strong mark of healing for my family and say 'we're not going to make this intergenerational'."
Ms Boonen, who is now 21, decided she could help by connecting with other young people growing up around adults experiencing mental health challenges.
"They don't have to feel shame about talking to me, because I've been there," she said.
Young people struggling to navigate mental health support
The royal commission into Victoria's mental health system acknowledged the need to provide dedicated support for the one in four children with a parent or guardian living with mental illness.
Rose Cuff, the chief executive of Satellite Foundation, has seen the need first-hand.
She founded the not-for-profit organisation in 2009 to support young people with a family member who faces mental health challenges.
"The person living with the mental health challenge was identified, but the people around them … weren't," she said.
"Children were unseen and pretty invisible, they weren't having their voices heard.
"They weren't even identified as being part of the family in services, so they were just lost, falling off the radar."
Ms Boonen is one of approximately 600 young people who have been involved with Satellite over the past two years.
Despite the royal commission, Ms Cuff said she still saw young people who were struggling to access mental health resources.
"As new services are put in place because of the royal commission … there's duplication happening," she said.
"There's not enough communication about what people are doing and how we can all work together, how we can make sure the information for young people is readily available."
One of the biggest challenges, she said, was getting support to the 9,000 or so Victorians aged under 25 who are looking after an adult who has a mental illness.
Youth mental health researcher at Orygen, Magenta Simmons, said one obstacle was young people not identifying as a "carer".
Dr Simmons said more organisations needed to listen to young carers and adapt their services to suit their unique needs.
"It's really important to take an intersectional lens and think about the different parts of a young person and their background… and how those needs meld together," she said.
"Young carers are not one thing, they are a very diverse range of people."
Embedding youth leadership
Following the royal commission, Satellite received almost $12 million in funding from the Victorian government to expand its services and engage with young people.
Ms Cuff said the funding enabled the organisation to establish guidelines and formalise its processes around youth leadership.
Young people at Satellite often lead or consult on projects including events, programs and the development of resources.
"We set up this co-creation framework as a way of giving us very clear guidance … we don't want to be doing it in a tokenistic way," Ms Cuff said.
The royal commission's report recommended the state government improve how young carers are identified and referred in mental health services and said the education system could play a role.
In line with the recommendation, Satellite is running outreach programs in schools.
Ms Cuff said the goal was to build awareness in school communities, rather than targeting individual children who may need support.
Ms Boonen coordinates Satellite's Youth Advisory Council, which sits alongside the organisation's board and provides feedback about the school programs.
"[The council] consults on internal and external policy and helps shape programs based on how they found the programs they've attended, but also what they would have loved to have as a kid," she said.
Minister for Mental Health Gabrielle Williams said incorporating young people's voices was crucial to the success of the royal commission implementation.
"Young carers bear responsibilities well beyond their years, looking after a loved one with a mental illness," she said.
"We must do everything we can to support them, and to ensure their voices are heard in this important reform."
The government is also working with Youth Affairs Council Victoria and Tandem, the state's peak body representing family and friends of people with mental health challenges, to support young people to contribute to mental health reform.
"Since the release of the [royal commission's] final report, work is now underway on 90 per cent of recommendations," Ms Williams said.
The state government invested $3.8 billion into mental health as part of its 2021/22 budget, which funded a range of support for children and young people.
The benefits of community
Ms Boonen wants to see young people and their families be connected to the right services and to others who share similar experiences.
"We really need a sense of community and connection … so a family who's struggling knows there's not just one door they can show up at, but there's a whole street. There are so many inroads to getting help," she said.
"We're friends with all the other parts of the sector, we share this common goal. We need that connectivity … so people never feel isolated or stuck."
Mia said one of the benefits of being involved at Satellite was the connection between participants.
"When family members drop their kids off at a program, they get to see someone who has been through Satellite and is a happy, functioning adult," she said.
"Every family feels scared that they failed the kids, somehow they've screwed up. But what you see is that, when you've got community especially, these young people grow up to be really wonderful people.
"And it's not in spite of their childhood, it's because of it."
