Julie Charlton has a clear picture of what her "utopian life" looks like: A house without front steps, a wide corridor and kitchen benches within her reach.
"I just want to be able to do those mundane tasks that everyone else gets to do," she said.
Independence is a priority for the 25 year old. But it's also something that feels out of reach.
Ms Charlton is a wheelchair user, having been born with spina bifida, but finding a home to accommodate her independence has been a challenge.
"It took us until I was 12 years old to find a house that actually had at least a ramp out the front," Ms Charlton said of her childhood home in north-west Sydney, where she currently lives.
Ms Charlton's parents, who have since also developed disabilities, spent tens of thousands of dollars renovating two bathrooms to make them wheelchair-friendly.
That investment has created a workable situation for Ms Charlton. But not every house or apartment has these amenities. For the six months between December and June, Ms Charlton lived with a friend in an apartment.
Its design meant, to use the bathroom or shower, she had to leave her wheelchair and crawl.
"While I didn't mind at the time, after a while that gets a little bit undignified and a bit dehumanising," she said.
"To be able to just live, I have to crawl everywhere."
'There is no excuse'
Finding an adequate house is a challenge for anyone in Australia, but it can be particularly difficult for the near-4 million Australians with a disability.
According to government data, in 2018, 12 per cent of people with disability had made necessary modifications to their homes.
However, measures have been taken to improve this. In 2022 the National Construction Code (NCC) established Livable Housing Australia's "Silver Level" Livable Housing Design standards as mandatory.
A guideline that requires new residential developments to have certain features for accessibility.
This includes hobless showers and reinforced walls suitable for minor renovations like installing grab rails.
In NSW, a number of social and affordable homes have been built under the Silver Level standard.
But, like Western Australia and unlike every other jurisdiction, the state has refused to opt-in to the NCC's new standard.
It's a decision advocates — including Ms Charlton on behalf of Physical Disability Council of NSW — are pushing against by rallying outside NSW parliament today.
"We deserve to have our government uphold our basic human rights as those who deserve housing," Ms Charlton said.
"There is no excuse for the NSW government's refusal to mandate accessibility standards in new housing," Building Better Homes campaign director Jessica Walker said.
The Building Better Homes campaign, which has organised the rally, is a coalition of a number of disability and older Australian advocacy groups, including People with Disability Australia (PWDA).
"One of the biggest issues is that not having an accessible home means that you don't necessarily have the ability to be included in standard social and societal action," PWDA deputy CEO Megan Spindler-Smith said.
That could mean struggling to leave a house. But it could also mean living in housing stress.
One 2018 study concluded that Australians with disabilities were more likely to be living in unaffordable or poor-quality housing. Government data has also suggested 10 per cent of those receiving homelessness services had a disability.
"You may actually also be required to stay with family, which creates additional burden on families when you could be living absolutely independently in a home that is accessible to you," Mx Spindler-Smith added.
The harms of inaccessible housing
Housing inaccessibility can have repercussions on wellbeing, including impacts on mental and physical health such as anxiety over safety. Conversely, removing these barriers can enhance quality of life.
"I'm now back in therapy, because the sense of having to move out of that place gave me a sense that I'd failed independence," Ms Charlton said on her eventual moving back home.
Mary-Ann O'Donovan, an adjunct professor of disability studies and CEO of University of Sydney's Centre for Disability Studies, said the intersection between health, home and housing was well-established.
"Even the experiences that we have [at] an early age — in terms of home — impacts our later life outcomes," she said.
That extends to those with disabilities, such as someone physically disabled being isolated due to their housing.
"And that then relates to a sense of loneliness, which impacts on mental health as well.
"Forced movement of people with disabilities is known to increase stress and increase mortality as well."
This intersection, Dr O'Donovan said, was reflective of a need for a flexible housing system that can respond to a person's changing disability or movement needs.
"We don't build in a way that reflects and responds to the life course, and reflects to people who have lifelong disabilities … and [how it] changes as they get older as well."
'Not a massive cost'
For advocates, introducing these measures in NSW wouldn't only improve living conditions for those with disabilities, but also avoid excessive costs.
Previous concerns made by then-minister for better regulation and innovation Kevin Anderson in 2021 were these standards were too expensive.
Australian Building Codes Board estimates state the highest cost per dwelling would be less than $4,400 to meet the Silver Level standards.
"That is not a massive cost, if you think about it in the long-term perspective," said Mx Spindler-Smith.
In a statement to the ABC, Minister for Disability Inclusion Kate Washington said the NSW government "continues to consult with stakeholders" on adopting the silver standard.
The ABC also contacted NSW ministers Anoulack Chanthivong, Rose Jackson and Paul Scully about whether there are plans to introduce changes to accessibility housing standards but did not hear back.
Mx Spindler-Smith said building new housing within these standards would be cheaper than later renovating a house. An issue that will likely be increasingly relevant as Australia's population continues to age.
"It's actually not cost impactful in any way, shape, or form," they said, adding that such a measure would have a "maximal difference" for those with disabilities.
"I don't think anything is going to solve the problem unless we all come together and ensure that every single house is fully accessible," they added.
"But what it does solve is … the ability for houses to be easily made fully accessible, regardless of what your accessibility needs are."
Source: ABC