Helping families of disabled kids 'find their village'

At a funeral for a baby who died just before her first birthday after struggling with a rare genetic condition and complex medical needs, three women stood together and noticed something that would stay with them long after.

Around the room were children hooked up to tubes and monitors, many receiving life-saving treatment. Their parents had brought them along despite the heavy atmosphere and grief.

"Traditionally kids don't attend funerals, particularly this cohort, because many ... are on a similar trajectory," explains Monique Power, founder of paediatric disability consulting company RippleAbility that had helped the little girl's family navigate her palliative diagnosis.

"We said to them after the service, 'Why did you bring your kids?' and every single one of them said to us, 'Where else were they going to go?'"

Ms Power, who attended the funeral with her co-founder Claire Falloux and CareCorner CEO Barbara Goodwin and son Winston, says the confronting moment was the genesis of an Australian-first program to support families with children facing profound disability.

The very first RippleAbility Respite Program launched this week, connecting these families with early childhood educators, play therapists, nursing staff and peer networks.

The pilot will run in Perth over four weekends, providing half-day Saturday sessions.

Children with complex conditions will be supported by nurses, early childhood educators, art therapists and counsellors. Siblings will also be included in activities.

At the same time, parents will access workshops with allied health professionals, lawyers, accountants and financial planners to help build a complete picture of their child's needs and future care.

Midweek dinners will connect parents with peers who share the isolation of life as a full-time carer.

"It's about teaching parents who to include in their village of support, both paid and informal, and connecting them with other parents who truly understand what it's like," Ms Power expands.

Before she began RippleAbility, Ms Power worked extensively across government assisting vulnerable populations and linking policy with frontline advocacy.

Then she had daughter Emmilou, who was born with a lifelong disability and complex medical comorbidities.

"For the first time I was sitting on the other side of the table, navigating the systems I'd previously helped put in place," she tells AAP.

"It was nothing like what you expect motherhood to be. When what you're seeing is not represented in mainstream media, it made it even harder to navigate that space."

Ms Power felt compelled to help others like her and so RippleAbility was born.

"If I have this intricate understanding and I'm struggling because I'm in survival mode; imagine what it feels like for parents who don't come from that level of awareness and comprehension," she explains.

Ms Goodwin, one of the three women at the funeral, was similarly inspired after the birth of her son Winston.

Now six-and-a-half, he loves rugby, has a zoo membership, a cheeky streak, three older brothers and a girlfriend. But he was also born with a rare brain malformation, is non-verbal and relies on specialised daily medical care.

"We were told initially we're probably not talking years for him, maybe more months for his life expectancy, and ... his life mission is to prove doctors wrong," Ms Goodwin says.

"Initially I decided not to go back to work … but I never had on my plan to be a stay-at-home mum. I love working. I get my energy out of going to work, then I know that I can be the best mum that I can be."

Returning to her job wasn't easy as Winston needs round-the-clock care.

But aside from navigating the system, finding and affording the requisite care, she also developed the disability support app CareCorner which tracks and shares Winston's seizures and time spent between nurses, school and medical teams.

"At the start I was, like, 'I'm not going to have a stranger look after my child, he's really complex and I need to be there', until I realised I can't be awake 24/7," she says.

"But to have that peace of mind, to go have a coffee by myself and quickly check in to see if something has been logged; that in itself is peace of mind."

Ms Goodwin's story is all-too common.

While the average Australian family uses 28 hours of subsidised childcare each week, families like hers don't have the same options.

Mainstream centres are not set up for medically complex children.

"We end up with parents reporting poor mental health and low income because one of them needs to pull out to provide care," says Michelle Olaithe, clinical and project lead at RippleAbility.

"So it leads to higher divorce rates."

There are an estimated 567,000 Australian children under the age of five with profound or severe disability yet few services are equipped to care for them.

"A lot of the funding kiddos get sits across separate sections - health, education, disability - and there ends up being no childcare centres from zero to five appropriate for them," Ms Olaithe tells AAP.

The new program could change the lives of many struggling families, she says.

"It's about arming the carers whilst also piloting what would be needed in a childcare centre for the kiddos in respite care.

"Parents will come out of it with a whole picture of their child - either evaluating the care they're receiving or identifying gaps they hadn't seen before."

RippleAbility has also partnered with Hannah's House, which provides nursing support for children with life-limiting conditions and childcare provider Goodstart, which is examining whether the model could be rolled out nationally.

"By getting Hannah's House and Goodstart in the same room and having these conversations, building budgets ... we've been able to build what we think is a working model that could then tack on to any childcare centre around Australia," Ms Olaithe says.