Until her late 30s, when she received a diagnosis of relapsing-remitting multiple sclerosis (MS), Emily Livingstone could very often be found up a tree.
The former arborist had a senior role at Kings Park botanic gardens in Perth, looking after the trees. It was work she loved and a life she described as “beautiful”.
“I would swing on ropes upside down with a chainsaw … I’d teach at Tafe, showing council boys how to use a chainsaw or a chipper. They were always pretty shocked at that, when a little chickie was coming along, showing them how to do it.”
A few weeks ago, Livingstone celebrated her 45th birthday somewhere very different – confined to a hospital bed in the Royal Perth hospital, where she has been stuck for more than a month.
Livingstone’s inability to leave hospital is not for medical reasons – she is medically fit to be discharged – but because if discharged she would be homeless.
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She doesn’t have friends or family who can provide the high level of care she needs, and her NDIS plan does not provide enough funding for her to get support for basic activities of daily living such as toileting, dressing, showering and cooking, meaning she cannot safely live anywhere else.
Livingstone and the hospital are in a bind. Medically, Livingstone does not need to be there; for safety reasons, she cannot leave.
“I feel like I’m in prison,” Livingstone tells Guardian Australia a month into her hospital stay. “I feel I’m being punished for being disabled.”
Emily Livingstone is concerned that if she is discharged from hospital she would be homeless. Photograph: Stef King/The GuardianLivingstone needs help toileting, dressing, showering and cooking. Photograph: Stef King/The Guardian‘Forced to stay in hospital’
Livingstone is one of many NDIS participants stuck in hospitals – despite no medical reasons for them to be there – because lack of support prevents their safe discharge.
Data from last year showed that as at 31 March 2024 there were 2,689 NDIS participants in hospitals around Australia, more than 40% (1,125) of whom were medically ready for discharge.
Some of these are people like Livingstone, who initially had a medical reason to be admitted (in her case chest pains, which raised concerns because she has previously suffered a heart attack) but have been cleared for release for some time.
At the end of June 2025, NDIS participants who were medically ready to be discharged from hospital were waiting more than two weeks – 16 days on average – to be released. The NDIA said this was down from a peak of 30 days in the March 2023 quarter.
On top of this are people who are called, in NDIS parlance, “social admissions”. This group are not just medically ready to be discharged but had no medical need to be in hospital in the first place. But due to lack of disability supports or safe accommodation they ended up there. This is a worsening problem.
The NDIS refused to provide raw numbers of how many NDIS participants were social admissions but did confirm that in the year to September 2025, 3.4% of all hospital admissions of NDIS participants were social admissions, up from 2.4% two years before.
“The NDIA is continuing to focus on improving the safe and timely discharge of NDIS participants from hospital,” an NDIA spokesperson told Guardian Australia.
Jordon Steele-John, the Greens senator for Western Australia and spokesperson for disability rights and health, called the situation “deeply concerning” and said it was getting worse, despite repeated promises from successive governments to fix the problem.
“Disabled people are being forced to stay in hospital simply because the disability supports they need aren’t available in the community.”
Steele-John pointed to changes made to NDIS legislation in late 2024 by Labor as being responsible for the increase in people “languishing in hospital beds”.
Greens senator Jordon Steele-John: ‘Disabled people are being forced to stay in hospital simply because the disability supports they need aren’t available in the community.’ Photograph: Mick Tsikas/AAP
Under the new laws, the definitions of certain disabilities and funding for particular therapies were changed, and mass reassessments of people’s NDIS plans were conducted.
Advocates say this has resulted in huge cuts to the support received by thousands of NDIS participants and have warned this would lead to people being hospitalised, forced into group homes or dying.
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Steele-John said Labor’s recent changes to the NDIS legislation are having a “profound impact”.
“We’re seeing people’s NDIS funding reduced or delayed, leaving them without the supports they need when they need them. This forces people into an impossible choice: staying in an unsafe environment or being admitted to hospital.”
‘Getting worse’
Apart from the stress and misery of being stuck on a hospital ward for weeks on end, Livingstone also fears that the longer she stays, the more her condition will worsen – particularly given the fact that stress is a known trigger for MS symptoms.
My mental health and self-worth has been shatteredEmily Livingstone
“I work really hard to maintain [my functionality], looking into things like neuroplasticity and all that kind of stuff, understanding what my condition is to help myself to slow down that process,” she says. “But I’ve been here for four weeks … and I’m getting worse. The longer I’m in this condition, the more permanent it becomes.”
Immediately before her admission to hospital, Livingstone had been living in an accessible apartment that allowed for support workers to visit and provide her with help to complete her daily living tasks, which she was forced to leave when her new NDIS plan came through in August.
In this plan, she was allocated two hours per day of support with daily living tasks, including toileting, showering, cooking and dressing, despite an occupational therapist assessment giving her a score of six on the Care and Needs Scale (CANS) – the second-highest level – which requires 20 to 23 hours of support.
‘I feel like I’m in prison,’ says Livingstone. Photograph: Stef King/The Guardian
Without adequate support worker funding, Livingstone had to leave her apartment.
The apartment is still available and, were her support reinstated, she says she would be able to move back in within days.
On Monday, after inquiries from Guardian Australia and following an emergency meeting between the NDIA, hospital staff and Livingstone, she received a new NDIS plan including enough support worker hours to allow her to move back into the apartment and out of hospital.
Livingstone said she was happy with the level of hours of support the new plan provided and would “move out to a suitable home purpose-built waiting for me this whole time” but said the whole process had left her “hopeless” and struggling with suicidal thoughts.
“My mental health and self-worth has been shattered … over this past six weeks feeling like I am in purgatory. It never ever should have to come to this.”
A spokesperson from the NDIA said: “While the NDIA acknowledges the challenging circumstances some participants face, the NDIS is designed to complement, not replace, mainstream services such as housing – which is the responsibility of states and territories.
“State/territory governments continue to be responsible for homelessness-specific services, including through homelessness prevention, outreach and access to temporary and long-term housing.”
In Australia, support is available at Beyond Blue on 1300 22 4636, Lifeline on 13 11 14, and at MensLine on 1300 789 978. In the UK, the charity Mind is available on 0300 123 3393 and Childline on 0800 1111. In the US, call or text Mental Health America at 988 or chat 988lifeline.org