Exclusive: Disability insurance agency ruled wrong to deny funding to man with dysphagia as a result of cerebral palsy

This article is more than 1 year old

This article is more than 1 year old

Thousands of Australians living with a life-threatening swallowing condition could now get NDIS funding after the National Disability Insurance Agency (NDIA) lost a high-stakes case at the administrative appeals tribunal.

Experts and advocates have described the decision as a “watershed”, arguing the agency would now be forced to fund swallowing supports, which are vital for people living with dysphagia. That would end a long-running battle in which the NDIA claimed the supports should be offered by the states.

But the ruling may also have broader implications for people with disabilities, and for the agency’s finances, as it threatens to overhaul what is considered state and NDIS responsibilities, experts said.

“This judgement has the potential to drastically change what the NDIS funds,” said Sara Gingold of Disability Services Consulting. “It will impact the way the scheme interacts with all other areas of government, from education to health to justice and everything in between.”

While it is unclear exactly how many people might be impacted by the decision, there are about 100,000 people who have dysphagia throughout Australia. People would need to be aware of the ruling in order to make use of it in dealings with the NDIA, advocates argued.

In a rebuke to the NDIA, the AAT deputy president, Brian Rayment, ruled the agency was wrong to deny funding to a 34-year-old man who had dysphagia as a result of cerebral palsy.

The plan created by his dietician would have costed $40 a day but the agency argued that thickening fluids requested by a speech pathologist – which helped the man swallow safely and “gave him independence and confidence” – were health-related, not a disability support.

The tribunal has previously accepted the agency’s interpretation of the law – that it did not need to fund supports considered the responsibility of another government service provider.

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“Whether or not the other government agency actually provided that support was considered largely irrelevant,” Gingold told Guardian Australia. “But in this watershed judgment, [the deputy president] … said that in the past the tribunal and the NDIA have both misinterpreted that section of the legislation.”

A win for advocates

Darren O’Donovan, an administrative law expert at La Trobe University, said the decision was a “powerful vindication of those advocates fought such a long battle to correct agency policy in this area”.

“Swallowing and dietary support is an integral part of people’s social and family lives,” he told Guardian Australia. “It is not just preventing a person from choking (or other medical events), it enables the person to step out confidently into the world.”

Piers Gooding, a disability law expert at Melbourne University, said the issue had not been “examined in the Federal Court so this decision sets an important precedent”.

He noted about 34,000 people had cerebral palsy in Australia. While the prevalence of dysphagia among them varied, it was substantial.

Gingold put the number of people impacted by the decision “in the thousands”.

The NDIA could appeal the decision to the federal court but that risked setting a more significant precedent.

A NDIA spokeswoman said: “The Agency is considering the recent decision in [the applicant] and the National Disability Insurance Agency (NDIA).”

Late last year, Guardian Australia reported the case of Tanisha Flemming, who had been denied funding as the NDIA and states argued over who should pay for the supports.

In January, the federal government said it would fund some supports for people with dysphagia as an interim measure, following a campaign by the Council for Intellectual Disability.

“This ruling should effectively make the interim funding agreement on swallowing therapies permanent,” said Justine O’Neill, the CID chief executive. “It is a positive development for many other NDIS participants who need ongoing health related therapies to be funded by the NDIS to enable them to maintain social interaction, quality of life and independence.”

O’Donovan said the judgment underlined the need for “federal and state politicians to commit to clearer rules and improved governance for the scheme”.

• This article was amended on 15 June 2019 to note that it is speech pathologists (and not dieticians) who recommend thickeners for people with dysphagia.