One of Tristan’s favourite pastimes is looking after his chickens. But between the back doorway of his community housing property and his chicken coop is a short, steep hill. In this space, he has fallen numerous times.
Tristan, who asked to be referred to only by his first name, has Ehlers-Danlos syndrome (EDS), which affects the connective tissue of the body and results in unstable joints prone to dislocation and severe pain. He estimates he falls at least once a week. He can dislocate a hip simply by rolling over in bed. Things that put Tristan at risk include stairs, steep gradients, the unevenness of grass, the slight rise where tile and carpet meet.
For him a fully accessible house requires flat outdoor paths, ramps and level access to rooms, doorways wide enough for a wheelchair or walker, grab rails, and modified taps and light switches.
When Tristan first moved into the Maitland community housing property, it did not have many of these features. He spent two years submitting requests for his housing provider, Hume Community Housing, to make alterations, only for the most significant ones to be ultimately rejected as too costly – a situation he describes as “stigmatising” and “dehumanising”.
Nationally, 41% of households in public and community housing contain at least one family member with a disability, according to the Australian Institute of Health and Welfare. But study from the Physical Disability Council of NSW showed that 69% of respondents in social housing in that state live in properties that are not fully suited to their needs.
Community housing providers have an obligation under the Disability Discrimination Act (1992) to provide “reasonable adjustment” to a house to support a tenant with a disability. But getting those modifications done is another matter.
In 2018, when Tristan moved in, his tenancy was managed by the NSW state government’s Family and Community Services. He had been in transitional housing, but found himself targeted for being trans, and left to live in his car.
“I just said yes to the first house they offered me,” Tristan says. “I was so desperate to be out of my car before winter hit that year.”
When he first inspected the house, Tristan was able to walk with a stick. But his condition deteriorated, and in 2019, he applied to Facs for modifications.
That year, Hume took over management of the property, along with others in the Hunter area.
Since then, Tristan and his healthcare workers have submitted at least three modification requests – requiring reams of paperwork including photographs and detailed background information – for ramps, widened doorways, grab rails, paddle taps, level access to the shower and other changes.
“Tristan is at risk of injury and decline of mental wellbeing should he continue to live in the home due to inappropriate access requirements,” his occupational therapist wrote in the medical assessment filed in August last year.
At one point, “out of desperation”, Tristan and his support workers fashioned a makeshift ramp for the front door.
Some changes were made within months. A couple of grab rails were installed, some taps were changed and a path was built in the back yard, although the gradient is still too steep for his wheelchair.
Late last year, Hume advised Tristan that they would make no further modifications, and his support workers were told verbally this was because they were too expensive.
Tristan has tried to find a private rental, but could not secure a lease on the disability pension. He can apply to transfer to another community housing property, but has been told there is a four-year wait for accessible housing in the Maitland area.
“I feel stigmatised,” Tristan says. “They said there were heaps of other people in my same situation, still waiting for the same ‘stock’. It is dehumanising to me to be told my need for safe housing is just about ‘stock’.”
The chief executive of the Physical Disability Council of NSW, Serena Ovens, says this kind of stalemate is common.
“Most providers only ever want to undertake the basic, relatively cheap, easy fixes to accessibility, but not address higher level accessibility for those that need more than a ramp to the front door,” Ovens says.
“Being forced to live in unsuitable housing, without the necessary access improvements is both dangerous and demoralising to those with disability, especially where they then live in substandard conditions.”
It felt deceptive – like I was being led along
In some situations, tenants may be eligible for funding to make modifications under the National Disability Insurance Scheme, or My Aged Care, though Ovens says both systems make applying “an arduous, time consuming and invasive process”.
A spokesperson for Hume said the company was “unable to comment on a customer’s direct circumstances” but that “sourcing appropriately adapted accommodation for people with a disability in NSW is very challenging”, made harder by extremely low rental vacancy rates in the area.
“This means that Hume is constrained and unable to source accommodation as quickly as is often required.
“When customers live in homes that are not suitable and there are limited modifications that can occur, along with limited options for relocation, Hume recognises additional supports are required. Hume acknowledges a missed opportunity to provide extended support in this case.”
The spokesperson would not comment on how it took cost into account when assessing an application for modifications.
Just before Tristan was informed that his modifications would not be made, the house next door became empty. He was friendly with the former tenant, and had seen the house contained many of the accessible features he needs. At that stage Hume had not told Tristan he would need to file transfer paperwork if he wanted to move, so he wasn’t considered for that property.
“I don’t understand why I wasn’t moved there,” Tristan says.
It is understood Hume has since been trying to find a new house for Tristan.
Tristan might not have had more success with modifications if his property were still managed by the state government. While new builds by the NSW Land and Housing Corporation are constructed to “silver” level accessibility standards, for older buildings like his, where there is no NDIS funding for major modifications, the government sets maximum work costs according to published guidelines. The most recent guidelines cap total modification possibilities without NDIS contributions at $18,500, benchmarked to 2016 figures.
Advocates argue that even high-cost modifications are worth it in the long run, as disabled tenants are often long-term tenants, and if they were to move out, the property would be in high demand given the level of community need.
Tristan’s proposed modifications are estimated to cost about $114,000, and are not covered in his NDIS plan.
“I wish they had told me that they weren’t going to do [the modifications] two years ago,” he says. “It felt deceptive – like I was being led along.
“The most hurtful thing for me was that they were just like, ‘We’re not going to do it because it’s too much money.’ But not only did it take them two years of us putting in modification requests, they couldn’t have said that when we first started applying?”