Melbourne woman with cerebral palsy fights to stay in her home after NDIS funding cut

·5-min read

A Melbourne woman with cerebral palsy is fighting to stay in her home just a year after moving in because the agency running the national disability insurance scheme has decided her funding is no longer “value for money”.

In May last year Samar Bain, 33, moved into a new apartment provided by the NDIS’s specialist disability accommodation (SDA) program. The home, in Heidelberg in Melbourne’s north-east, gives her the freedom and independence she has long desired.

But changes to her NDIS plan mean she faces being forced to move back into shared accommodation.

Related: Just a year after a tribunal ruled in Jon’s favour his parents are again fighting NDIS cuts

“Back in April we went for a plan review and I was told … that my SDA funding was being cut and I will need to move out into shared accommodation,” Bain said. “There was no warning, there was no talk about my SDA being reviewed – it was really a bombshell.”

She sought an internal review of the decision, which was denied. A letter, seen by Guardian Australia, states that the funding that would allow her to keep living in her own home was not considered “value for money”, one of the requirements of the NDIS Act.

“Information and evidence within your s100 review request notes you currently require intensive person to person supports for your disability related support needs for significant periods of the day,” the letter states. “These supports would be best met in a cost effective shared living arrangement.”

The new funding allocation requires her to live with two other residents.

In response to inquiries from Guardian Australia this week, a National Disability Insurance Agency spokesperson said: “The NDIA is aware of this matter and has this week been working to resolve the issue to ensure Ms Bain has the SDA funding required to remain in her home.”

Melinda van der Westhuizen, the chief executive of Summer Housing, Bain’s accommodation provider, said: “Summer Housing is a values-driven, not-for-profit organisation. We will continue supporting Samar to achieve the best possible housing outcomes.”

Bain said she had been delighted to be approved for the home. Asked what she liked about her apartment, she said: “Just being able to have my home, set up the way I want it, and just maintaining my independence.”

She added: “My understanding was once you get SDA, you have it forever, unless you wanted to move.”

Related: Funding delays keep NDIS participants in hospital months longer than necessary, report finds

Bain’s support worker of three years, Nikki Cooke, said the agency’s decision was hard to understand.

“They were happy to make the decision for Samar to go into her own apartment,” she said. “How can they then reverse the decision? She thought this was her forever home. And she’s comfortable there, she feels safe there.

“She’s a grown woman, she’s used to her independence. To go back into shared accommodation, that’s no good for her mental health. It’s hard enough with cerebral palsy having to have carers in and out of your life.”

Bain’s case is an example of the challenge the new Albanese government will face, having promised during the election campaign to stop what it said were arbitrary cuts to funding packages.

It is common for NDIS plans to be reduced – or increased – when a person’s circumstances change but critics have complained that many changes are overly harsh, sudden or made without good explanation.

This led to a spike in appeals to the administrative appeals tribunal, which was viewed as evidence of growing satisfaction with the agency’s decisions.

Guardian Australia has reported cases including a man in his 20s who spent his final months battling for denied supports, and cuts to the funding of a man with intellectual disability that forced his parents back to the AAT for the second time in two years.

The new government has pledged to reform the appeals process and promised a review into the “design, operation and sustainability” of the scheme.

The likely incoming NDIS minister, Bill Shorten, said during the campaign that SDA was turning into a “dog’s breakfast”. “Specialist disability accommodation – or SDA – in particular needs reform,” he said.

“The authorities are making it so hard for participants to access SDA housing it threatens to become in effect a return to the bad old days of group homes.”

SDA participants make up a fraction of overall NDIS participants, with about 17,000 people accessing those services, of the more than 500,000 people on the scheme.

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Guardian Australia has reported on the extraordinary lengths people with disability have gone to in order to secure suitable housing.

A Summer Foundation and La Trobe University study also found NDIS participants are spending months in hospital waiting to be discharged due to delays in approving funding packages for accommodation and other support.

Bain said she was speaking out as a “voice for people who don’t have a voice”.

“I’m hoping that if somebody reads my story that is going through the same situation that I am, they will feel able to speak up and say, ‘It’s not right.’”

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