‘Holding cell’: Melbourne family with disabled son stuck in ‘transitional’ housing for a decade

When Rosalie Dow moved into transitional housing in Melbourne with her two young children in 2013, she thought it would only be for a few months.

Dow's son, Mayer, was two, and showing signs of what would soon be diagnosed as Coffin-Lowry syndrome, a rare and often debilitating genetic condition with complications including intellectual disability, seizures, hearing impairment, sensory and behavioural issues, and an inability to walk.

Transitional housing is supposed to be short term: a stopgap between homelessness and permanent social housing. For the family, who subsist on Dow's carer payment, that meant perpetually renewing a three-month lease, constantly walking the precipice of housing insecurity, waiting.

They have been living like this for 10 years.

"I'm just a sitting duck of the system really," Dow said. "In the holding cell of transitional housing."

Dow first told the Victorian Department of Families, Fairness and Housing (DFFH) via her community housing provider Launch that the family needed accessible housing in 2013. In 2019, they were moved to a second property, owned by the government, in Melbourne's inner north. After a year there, Dow applied for major modifications.

Mayer uses a wheelchair, but the house cannot accommodate it: the front and back doors have steps, and many internal doors do not allow the wheelchair to pass through properly, while the wheels stick on carpeted floors. The shower sits over a bath without grab rails, so Dow and Mayer's carers have to lift him in and out. Many of the rooms, including the toilet, cannot fit a hoist. And there's no air conditioning, making Mayer more likely to have seizures, as he cannot regulate his own temperature.

Dow was told the government would not make those modifications as the department's policy on transitional properties was not to perform "works that are significantly more expensive than other options such as a transfer of the person requiring the modifications to a more accessible dwelling".

"That's been the same story for 10 years," Dow said. "I'm physically burning out from the environmental stressors. And it's not just about me - it's a workplace here too, with Mayer's carers. How can I mitigate risk with Mayer's safety and their safety?"

Disability advocates have long argued that accessibility features make housing more livable and accommodating for everyone, not just people with disabilities. According to Australian Institute of Health and Welfare data, 41% of households in social housing nationally contain at least one family member with a disability.

Information is scant about how many social housing access modification requests are rejected in Victoria. The housing department said it received 75 modification requests in the last financial year, and all were approved.

But the Victorian ombudsman's office received 38 appeals in relation to the issue in the same period, and said in its 2022 investigation into social housing complaint handling that this number was probably a vast underestimate of dissatisfaction, as renters were often "reluctant to complain, fearing reprisal" while "others are unaware of their right to dispute official action or inaction".

Dow said the situation was damaging the upbringing of Mayer, now 12, and her daughter, Poppy, 10.

"This has been their whole early childhood: me spending all my energy on this and getting absolutely nowhere," Dow said. "That's where it's frustrating - it's taking away their childhood by taking away my energy.

"I'm a single parent, there's only me. How much can I do? I have to be a housing advocate, I have to be an NDIS advocate, I have to care for a disabled 12-year-old, and we're on $200 a week each to survive when it comes to my pension."

The recently elected Greens MP for Richmond, Gabrielle de Vietri, has twice written to the Victorian housing minister in support of Dow's requests, first in 2021 in her capacity as mayor of Yarra and again this month.

"There's a huge gap in the housing system where families with disabled children are falling through the cracks, finding themselves struggling in so many ways," De Vietri said.

"It doesn't have to be like this. The government should invest in making public housing stock accessible, so that it is easier for families with disabled members to find a suitable home."

A spokesperson for Homes Victoria said the department was providing modifications to public housing properties to support and enable residents to live independently. "We know how important it is for properties to meet the accessibility needs of our renters," the spokesperson said.

Guardian Australia understands Homes Victoria has acknowledged the process of moving Dow and her family out of transitional housing has taken too long.

The Dows' immediate future is unclear. Launch Housing said it understood the family had been made an offer of a permanent residence that would be modified to meet their access needs but would take some months to complete, and Homes Victoria said a property was identified for the family two weeks ago. Dow said the last formal offer she received was in November, and it was cancelled because it did not meet their access requirements.