A billion-dollar dirty secret: Homes hide ‘worst conditions you can imagine’

For young Australians in the prime of their lives, it’s a cherished rite of passage delivering them their first taste of freedom and independence.

But when Sydneysider Ella* moved into shared accommodation in 2023, she was catapulted into a powderkeg from which there is no escape.

Superficially, her home – in one of the legions of new builds that have sprung up across western Sydney – appears pristine.

But behind closed doors, there are the nauseating smells; shrieks and screams; smashed walls and, sometimes, extreme violence, which have become Ella’s harsh new reality.

A bruise suffered by a woman at Sydney accommodation operated by NDIS provider Beyond Care. 

Because she has a disability, Ella was made to move into accommodation where she has access to self-contained areas but no say over who she shares the communal spaces with. Sometimes, other residents are beset by profound mental illness that can erupt in erratic behaviour and fits of rage.

Ella was injured last year in a brutal incident that blackened nearly every inch of her thigh.

She is reluctant to talk about what happened, in a property overseen by NSW disability provider Beyond Care, because she doesn’t want to land anyone into trouble.

“It makes me sad,” said the mild-mannered woman in her mid-20s who is fond of strawberry milkshakes, and dreams of becoming a mother.

A few kilometres away, in a disability group home also run by Beyond Care, family members have discovered their beloved matriarch with a bandage plastered to her curls to stem the bleeding.

Carol* has fallen and sustained head injuries in her family’s absence.

A woman’s head was injured when she fell in a Sydney group home operated by Beyond Care.

The familiarity of this scene is what disturbs them most. On numerous occasions they have discovered Carol bruised, injured or bleeding, or living in filthy, unsanitary conditions, the family allege.

However, they are powerless to do anything to help her.

Ella and Carol are under the care of the NSW Public Guardian, which has rejected requests that they be transferred to a different disability services provider but mounted a staunch defence of its processes.

Strict secrecy laws prevent either woman from being identified by this masthead.

In Carol’s case, the regulator intervened – a fortnight after this masthead approached it with questions about her care.

An investigation by this masthead can publish a cache of photographic and video evidence that documents alarming conditions inside Australia’s disability group homes, including serious injuries, squalid and unhygienic living conditions, safety hazards and delays in medical treatment.

A woman’s arm was bruised after a fall in Sydney group home operated by Beyond Care.

It comes amid a backdrop of soaring complaints to the national watchdog, with a 78 per cent uptick year-on-year.

According to experts, it poses the bewildering question: how can a scheme that is soaking up billions of dollars in taxpayer funding each year through the National Disability Insurance Scheme (NDIS) be leaving scores of the country’s most vulnerable residents unsafe?

Group homes allow four to six people with a disability to live together with support funded by the NDIS through its supported independent living or specialist disability accommodation schemes.

At least 17,000 people with disabilities live in group homes within Australia, part of a broader cohort of about 43,500 Australians on intensive support packages funded by the NDIS.

A recent report by the Grattan Institute found those packages cost taxpayers about $15 billion a year, or an average of more than $350,000 per person.

This means that nearly 40 per cent of total NDIS spending is directed to 7 per cent of its participants.

“The cost is extraordinary,” said Dr Sam Bennett, the Grattan Institute’s disability program director. “The quality for that kind of price tag should be considerably higher.”

The final report by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, published in September 2023, laid bare rampant violence, abuse and neglect in group homes across the country.

Nearly 18 months later, whistleblowers, experts and advocates interviewed by this masthead have decried what they perceive as a lack of urgency in the government’s response to a situation one advocate described as “devastating” and a “national shame”.

“We cannot have people with a disability living in homes where they are suffering from some of the worst conditions we can imagine,” disability rights advocate Elly Desmarchelier said.

Most of the seven royal commissioners recommended that group homes be disbanded entirely over 15 years and replaced by alternative forms of accommodation.

The issue has been at an impasse since July last year, when the federal government revealed it was “considering” the recommendation.

“Virtually nothing has happened,” Bennett said.

Bennett co-wrote the Grattan report which concluded there were superior and cheaper alternatives to group homes, but they were not widely available to NDIS participants.

Other experts disagreed that the group home model was irreparably broken.

However, all were unanimous about the need for urgent government intervention to protect residents from violence and neglect, weed out unscrupulous operators, and offer people with a disability more choice in their living arrangements.

A snapshot of seven of Australia’s largest care providers by the NDIS Quality and Safeguards Commission last year painted a bleak picture.

They recorded more than 7000 serious incidents of abuse or neglect over four years.

Desmarchelier said it was not too late for action, but voiced frustration at the pace of change.

“The human harm exposed in the disability royal commission spans millions of people and years of work,” she said.

Disability rights campaigner Elly Desmarchelier has warned some people who reside in group homes are living in the “worst conditions we can imagine”. Credit: Paul Harris

“We didn’t even see a moment where the Australian public stopped and recognised the deep gravity of what the royal commission found.

“We know what needs to be done to stop this abuse and violence and neglect, but we’re not doing it.”

Home truths

Carol’s family was resigned to the inevitable. It was apparent they could no longer care for her at home as the symptoms of her schizophrenia grew increasingly severe.

But they were adamant the 64-year-old could still live somewhere with kind-hearted people where she would be kept safe. They hoped Carol’s carers would embrace her quirks and foster her love of animals, jewellery and music.

Instead, Carol’s family was crushed when she was hospitalised with head injuries within 18 months of moving into a group home operated by Beyond Care in mid-2022.

Multiple falls are among a litany of grievances the family has had with the for-profit disability provider, which was established in 2014 and operates at least 18 group homes across NSW.

The family say they have witnessed “deplorable” living conditions during visits, supplying photographs of stained pillows, the floor dirtied with dead cockroaches, matted hair and food, and exposed nails from a broken wardrobe in Carol’s room.

A dirty mattress in a Sydney group home operated by Beyond Care.

Correspondence seen by this masthead shows it took nine weeks for the provider to organise a replacement for Carol’s stained mattress. Her daughter, Kate*, questions whether that would have occurred at all had it not been for her complaints.

“When Mum had been incontinent overnight, she has been left to lie in a wet bed, not only overnight but for several days, until a visiting family member was left to change sheets,” she said.

The family fears not all of Carol’s injuries have been accidental. On one occasion, Carol was nursing a painful bruise and confided in Kate that she had been struck in the foot by another resident.

A dirty pillow in a Sydney group home operated by Beyond Care.

Compounding the family’s frustrations, they are hamstrung from seeking medical care for Carol due to the guardianship arrangements.

Kate has been alarmed at how often she sees Carol’s legs bulging with fluid, a type of painful swelling known as oedema.

It took six months for Carol to receive follow-up care with a specialist after a radiologist flagged she was possibly suffering from normal pressure hydrocephalus due to abnormal findings on a CT scan.

The condition, which sees fluid accumulate in the brain, can result in severe disability or even death if left untreated, according to the Brain Foundation.

Carol’s legs are often swollen.

When Carol eventually saw the specialist, he concluded her symptoms did not resemble normal pressure hydrocephalus. However, he noted in correspondence seen by this masthead that: “Unfortunately no scans were available for me to review.”

The specialist also noted there was “no family history available”. It appeared a carer had mistakenly advised that Carol had no contact with her three children and had not experienced any disorientation.

In October 2023, an occupational therapist issued a blunt warning that Carol’s home was no longer suitable due to its uneven surfaces.

The therapist noted there had been “multiple incident reports detailing falls or near misses, with ongoing concerns regarding Carol’s safety within the home”.

A large blister appeared on Carol’s swollen leg after a fall in a Sydney group home operated by Beyond Care.

On arrival, she discovered Carol sitting alone on the front verandah.

“Both support workers [were inside] on their phones,” the therapist’s report said.

The therapist recommended Carol receive full-time one-on-one supervision due to her disorientation and behaviours of concern, although it does not appear the recommendation was ever actioned.

Such staffing ratios are determined by a person’s level of funding from the National Disability Insurance Agency (NDIA), based on the recommendations of health professionals and other evidence.

After the therapist issued a report, Kate took her complaints to the NDIS Quality and Safeguards Commission. She broached concerns, including that it often fell on her to ensure her mother’s living conditions were safe and hygienic.

The NDIS commission agreed Carol should be relocated due to the risk of a fall.

A further six months elapsed before the Public Guardian moved Carol into another home, also run by Beyond Care.

Kate said the NDIS commission closed her complaint after the transfer was agreed to, without addressing her other concerns about her mother’s living conditions.

She has made multiple fruitless requests that her mother be transferred to another provider.

“This lack of accountability is unacceptable and raises serious questions about the oversight and safety measures in place for vulnerable individuals,” Kate said.

The family say Carol has had a string of falls in recent months, including one which left her with a bloodied head.

“It makes me feel very sad and angry,” Kate said. “I’ve been trying for a very long time to get my mum out of this position, but the public guardian has been in my way, stopping me.”

The NDIS Quality and Safeguards Commission is responsible for overseeing the quality of care in group homes and for investigating any breaches of the code of conduct.

A fortnight after this masthead contacted the commission with questions about Carol’s care, the family’s complaints were referred to its incidents team for further assessment and monitoring.

Commissioner Louise Glanville said the agency acknowledged the seriousness of the matters raised regarding Beyond Care.

“We can confirm there is a history of complaints against this provider and the matters are being actively managed; however, we are unable to comment on specific details to ensure the privacy of participants and maintain procedural fairness and process integrity,” she said.

A spokeswoman for the NSW Trustee and Guardian was also unable to comment on individual client matters due to laws prohibiting the identification of a person under guardianship.

However, speaking generally, the spokeswoman said the agency prioritised a person under guardianship’s welfare and interests when making decisions about their living arrangements.

“The NSW Public Guardian navigates often complex and competing needs when making a decision,” she said.

Those included the views of the person under guardianship, their treatment of professionals and family or friends, risks related to medical conditions, any reports of critical incidents, and the suitability of proposed care arrangements to provide a safe environment.

“Where possible, a decision will be made that is in line with the represented person’s wishes,” she said.

The spokeswoman said the agency received regular updates about people under guardianship from their accommodation, medical and allied health teams, including when there had been an incident related to challenging behaviour between residents.

“When incident reports are received by the Public Guardian that indicate injury, particularly unexplained injury, appropriate measures will be taken to ensure the person’s ongoing safety,” she said.

“The Public Guardian will consent to medical assessment and treatment where appropriate.”

She noted that providers were obligated to report any injury requiring medical treatment to the NDIS Quality and Safeguards Commission for investigation.

The Public Guardian closely monitored the provision of medical support for people under guardianship, the spokeswoman added.

“The ongoing provision of medical care, including for mental health, is determined by a represented person’s treating clinicians,” she said.

Beyond Care did not respond to this masthead’s detailed questions.

‘Huge red flag’

Ella wishes to be safer, happier and to “be free”. But her bids to leave her home run by Beyond Care have been blocked by the Public Guardian.

Ella has been pleading to change providers or move back home with her family after a run-in with a Beyond Care worker who she alleges swore at her for taking a paper sign down from her door.

On another occasion, she ventured into the bowels of her building to investigate the source of a sickening stench.

She discovered mounds of fly-blown, rotting garbage had been left strewn across the parking lot. Ella said the decaying trash pile was left there for up to two months before it was cleaned after a flurry of complaints.

A quality expert agreed to review photographs and videos of conditions in Beyond Care’s homes for this masthead, on the condition of anonymity because he is not directly connected to the matter.

He said it would be a “huge red flag” if the bruises suffered by Carol and Ella had not been reported to the NDIS commission, which must be notified of any non-accidental physical acts intended to cause hurt or harm, along with any instance of extensive bruising.

The expert said the other images were a “clear cause for concern”, but noted it was important to recognise NDIS providers were not expected to provide a hotel or hospital-like service but to assist residents attend to their own needs.

“If Carol had been left for days in a wet bed, and the staff had not actively engaged with her about changing sheets, this is neglect and both the provider and workers would be in breach of the NDIS Code of Conduct,” he said.

Carol has said she does not want to transfer disability providers, but Kate believes her mother fears change and does not understand she might enjoy better living conditions elsewhere.

“Kate’s views have no legal weight, which is always a dilemma for the loved one,” the expert said.

The spokeswoman for the Public Guardian said it visited people under guardianship in their homes, including making unannounced visits when there were concerns about their living conditions.

“Guardians also seek the view of others who visit the person at regular intervals to provide medical or allied health support,” she said.

“When the Public Guardian is made aware of information to suggest that there are quality issues with a person’s living arrangements, appropriate measures will be taken to ensure the person’s ongoing wellbeing.”

She noted that monitoring standards of care and the regulation of NDIS providers was not the role of the Public Guardian but a matter for the NDIS Quality and Safeguards Commission.

‘Ticking boxes’

The commission was singled out for criticism by the royal commission, which found its oversight of NDIS providers was inadequate.

It comes as the commission has been inundated with more than 29,000 complaints last financial year, a 78 per cent increase on the previous year, with the majority regarding provider practice, worker conduct and allegations of neglect or abuse.

Glanville told this masthead the agency had historically been understaffed since its inception in 2019, resulting in unacceptable delays in acting on complaints.

“Following recent allocation of additional funding to improve systems and processes and increase staff numbers, we are acting in a more timely manner to address serious matters,” Glanville said.

“The additional funding received also enabled the NDIS commission to establish a Housing and Living team to focus on matters such as those identified.

“The NDIS commission continues to receive record numbers of complaints and we prioritise those complaints where participants are most at risk.”

Glanville said supported accommodation, including group homes, was a key focus for the commission, as evidenced by its Own Motion Inquiry completed in 2023, and the resulting action plan.

As part of the plan, NDIS commission team members conducted a series of announced and unannounced site visits to supported accommodation settings throughout 2023 and 2024 to monitor the safety and quality of services.

But Bennett said only a small number of providers were inspected as part of the action plan and such changes needed to become business as usual.

“I would like a mandatory inspection regime, including unannounced inspections, introduced for all shared accommodation services,” he said.

He also warned the problems with group homes were too pervasive to be resolved by a commission that was largely in a “reactive” position in terms of responding to large volumes of complaints.

“With its current resources and powers, it’s hard to see that it could actively work to stamp these issues out,” Bennett said.

Jen Hargrave, a University of Melbourne researcher and long-time advocate for disability rights, said some people she spoke to in the disability community had never heard of the safeguards commission.

“That low level of awareness speaks to the limitations of having a safeguarding body in an office with people at desks, without outreach and face-to-face contact and earning the trust of people in these isolated settings,” she said.

Hargrave added that in the past, the commission had been slow to act on complaints until they hit the media.

“When we have seen action, it’s been after extraordinary lengths have been gone to,” she said.

However, she welcomed Glanville’s appointment to helm the agency in August.

“There is strong hope among those watching the commission that their recent significant changes in leadership can make positive change,” she said.

“The new leadership will need support. It is hard to shift such entrenched structures which don’t resource on-the-ground work.”

*Names have been changed for legal reasons.

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