NDIS participants like Alicia stuck in hospitals waiting for homes as specialist housing sits vacant, advocacy groups say

Alicia Appleby is 38 years old but she’s been living in a geriatric ward in a Melbourne hospital for more than 260 days.

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Ms Appleby has had two strokes, has a mild intellectual disability and needs constant care.

She said while the hospital ward she is in was “lovely”, the staff were struggling with her care, and other patients had been intrusive.

“They can’t cope with my complex needs,” Ms Appleby said.

“There are confused patients. At one stage I had a man try and hop in my bed.”

Alicia Appleby wants her independence.(ABC News: Chris Le Page)

Ms Appleby doesn’t need to be in a hospital. The only reason she’s there is because of a dispute with the NDIS over the details of her care and housing plan — and she has nowhere else to go. 

“One person says one thing and another person says another thing,” she said. “It all comes down to they want more information, but they’re not listening.”

The figures show she is not alone. 

Advocacy groups estimate 1,140 NDIS participants are stuck in hospitals waiting for plans to be signed off or for disputes to be resolved.

The median wait time is up to 200 days, and they say it is costing hospitals $800 million a year.

At the same time, the groups estimate there are thousands of specialist homes sitting empty, yet to be allocated to NDIS recipients.

Under the NDIS, high-needs participants such as Ms Appleby can get specially designed homes under a program called Specialist Disability Accommodation (SDA). 

But they also need people to care for them in those homes. That program is called Supported Independent Living (SIL) and the two work hand-in-hand. 

Ms Appleby said she was told by the NDIS it was her SIL provider who had rejected her funding. Her SIL provider told her it was “a lot of other things that were a roadblock” such as the “installation of the hoist”.

‘In for review’

When approached by the ABC, an NDIS spokesperson said Ms Appleby was unable to move into her first property because she was only funded to be one of three people in a house, and it was a property for two people.

Ms Appleby was told that if she disagreed with the plan funding she could “put in for a review” with the Administrative Appeals Tribunal. 

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She has lodged a review, becoming one of the 4,480 Australians forced to go to tribunals to appeal funding cuts or refusals relating to their NDIS plans during 2021 — more than three times the number of cases in 2020. 

“I feel like I’m worthless,” she said.

“I feel like I’m abandoned by the system.”

Advocacy group the Summer Foundation is one of 150 organisations behind a campaign called Down to 10 Days, which is calling on the federal government to make faster, more accurate decisions around housing.

Tim Naughtin from the Summer Foundation said there were long waiting periods for housing provided by the NDIS. (ABC News: Matthew Holmes)

Down to 10 Days campaign director Tim Naughtin, who is from the Summer Foundation, said people with disability were either “stuck in limbo for months or having to fight the NDIS for the accommodation that they need”.

Mr Naughtin said it was frustrating that thousands of people were sitting in hospital or nursing home beds waiting for appropriate accommodation, while many houses and units were sitting empty.

Many, like Ms Appleby, are told to go to the Administrative Appeals Tribunal to appeal. A Summer Foundation survey found that in 2022, 92 per cent of people end up winning their cases.

Tim Naughtin shows off specialised equipment in an SDA home. (ABC News: Matthew Holmes)

“There is an apartment [I know about] that’s been empty for close to two years,” he said.

“It seems the blockage is due to bureaucratic hurdles and delays.

Whether that is by design to keep costs down or because the National Disability Insurance Agency simply can’t process paperwork efficiently, I don’t know.”

‘People are sick of fighting’

The Housing Hub, an initiative of the Summer Foundation, is a service that matches people with disability with appropriate housing. 

A report by the initiative found there were 2,000 room vacancies across 900 of these purpose-built apartments and houses.

On top of that, quarterly figures from the NDIS show that the budget for this type of housing has been underspent by more than two-thirds. 

The NDIS spokesperson said that funding decisions for SDA continued to be made in accordance with the NDIS act.

The spokesperson said they welcomed feedback from NDIS providers and the disability sector to ensure that eligible NDIS participants achieved the right outcomes.

NDIS Minister Linda Reynolds said there had been no cuts to the NDIS, the scheme remained fully funded and she had met with the sector to fast-track reforms to SDA housing.

“I agree we must continue to work collaboratively to reduce decision-making time frames,” she said.

“NDIA need to balance timely decision-making with quality outcomes.”

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Opposition NDIS spokesman Bill Shorten said the problem was widespread and the Labor Party would increase the number of staff in the National Disability Insurance Agency to work through the backlog.

“We’re interested to see the feasibility of putting deadlines on decisions so that there’s a guarantee that people only have to wait a certain amount of time to get the decision,” Mr Shorten said.

“This is a widespread problem and it’s causing neglect and desolation of the soul for the people involved.”

‘A vicious cycle’

For Ms Appleby, the wait for her SDA funding issues to be resolved has severely impacted her mental health. 

“I have dark days [where] I’m scared to get out of bed because I’m scared I’m going to self-harm. It’s a vicious circle.” 

Ms Appleby said all she wanted was to get out of the ward and into “secure, stable housing”. 

“If I had my own place, I’d be able to live my life, go and see my friends, and go back to study.”