Help for disabled youths left at the mercy of carers

When a support worker bent Jessi Hooper's customised manual wheelchair trying to force it into a car boot, the physical damage was only the beginning.

"There were a lot of issues that entire shift and the entire time I was messaging one of my usual support workers saying 'I don't feel safe, I don't feel comfortable with what's going on'," the 25-year-old tells AAP.

"I was filming certain situations."

Ms Hooper, who lives in Melbourne and uses a wheelchair full-time following medical negligence during surgery at age 19, was left emotionally distressed and without recourse after the worker's actions - and the agency's refusal to take responsibility.

"I was getting back into the car after my appointment and she said 'the chair won't fit, can I drive with the boot open?' I said 'no, you cannot drive with the boot open with my really expensive customised wheelchair dangling out the back,'" she recalls.

"She was jamming the boot down on my wheelchair and she bent it. It's still quite bent."

The incident left Ms Hooper unable to leave home for several weeks until an electric chair arrived. But the manual chair - still broken - sits in her cupboard to this day.

"It hurt so bad to actually sit in it. I kept saying to them, 'no it's bent, I can't sit in it, it's hurting me, it's poking me - it needs to be unbent and this bit needs to be fixed up.'"

Now, thanks to the Youth Disability Advocacy Service, other young people facing similar treatment might be better equipped to seek justice.

The Right to be Heard Hub is a new digital platform co-designed by young disabled people to provide clear, accessible information about rights and complaint processes within the National Disability Insurance Scheme system.

The resources simply weren't there when Ms Hooper endured her experience and she remembers how isolated she felt.

"When I had that problem, I was messaging my good support worker going 'I don't know what to do, I'm lost,' she says.

"I was sending her photos and videos saying 'this is what she's doing to me'. She was the one who said you need to report it and ask for payment back."

What followed was months of frustration.

The support agency set up a mediation but "the worker never turned up".

The NDIS offered to replace the chair entirely - a $15,000 solution - when Ms Hooper knew a $2000 part would fix the problem.

For young people navigating these systems for the first time - often without parental advocacy - the process can be daunting. The Right to be Heard Hub aims to change that.

"This website is staying in my bookmarks," Ms Hooper says.

"It's easy to read and understand. I have dyslexia and cognitive disorder, so as someone who struggles to read and understand concepts, it's been really great that I can just click through, it has highlighted components and I can go, 'this is what I need', this is helpful."

She's particularly excited about new tools being added soon: "The hub is really saying this is what you can do about this, this is how you can write an email about this. There's a template coming out later this month."

Unfortunately, Ms Hooper's experience is not uncommon.

Elina, another young chair user with hearing and vision loss, experienced sustained bullying as support workers made fun of her for using sign language and how she looked whilst communicating.

"It was a complete nightmare," she says.

"If I had access to the Hub as a source of support then, I would have realised what was happening was not normal."

She might also have felt more confident about speaking up.

"Unfortunately we hear of many similar stories," says Youth Disability Advocacy Service head Mija Gwyn.

"Disabled young people are more likely to experience discrimination and abuse - be that in education, employment or when accessing services."

There are additional barriers too.

"They are not able to take control of their plans and funds until the age of 18, so parents or carers are the ones who make decisions - including whose care they are in," she says.

"All of these factors do increase the risk of disabled young people having a negative experience."

The Right to be Heard Hub is designed to support those who "might not know how to make a complaint or don't feel like they have a right to", Ms Gwyn says.

"They might be concerned they might lose their services ... They don't want to offend or upset people.

"If a young person hasn't had a good experience of a good standard of services, they might not know what to expect or that they can expect better."

The hub includes fact sheets, real-life stories, videos and step-by-step guides in accessible formats like Auslan-interpreted content and easy-to-read documents.

"It is kind of demystifying the process so young people can feel comfortable and know it's OK to make a complaint," Ms Gwyn says.

"It is also a useful resource for support providers so they can see the Right to be Heard Hub and be able to receive correct info as to how they can improve their services."

Though the NDIS has its flaws and was "not designed to centre the voice and experience of disabled young people", Ms Gwyn says it's significant that the Hub has been created with NDIS funding.

"Yes, they are aware that the process needs some improvement and of course these things move slow but we are getting there," she says.

For Ms Hooper, it all comes down to one thing: "It's a shame it wasn't around when I had the support worker issue."