Liberal senator’s teary speech: ‘Frightened beyond words’ for autistic son on NDIS

Outgoing Liberal Senator Hollie Hughes has said she fears for the future of her autistic son and the National Disability Insurance Scheme in a teary final speech about the uncertainty families face under government changes to make the $48.5 billion scheme more sustainable.

Her speech came as the NDIS was thrown back into political debate after Liberal Senator Jane Hume on the weekend said the scheme was “out of control” and more should be done to curb costs, leading Labor to accuse the Coalition of secret plans to cut funding.

Hughes told the Senate that her son, Fred, recently had his NDIS plan cut, which reduced the funding he could access. But she said after six years of advocacy in parliament and “hitting my head up against a brick wall”, she did not have the energy to contest the agency’s decision.

“When I’m no longer around, when his father is no longer around, my son will need lifelong supports. He has a significant, permanent, lifelong disability, so I need it to be sustainable,” Hughes said through tears in a speech to the Senate on Tuesday.

“I am frightened beyond words that, when I leave this place, no one will care ... Because, if you are not part [of the NDIS], it’s just something that’s overblown; it’s just something that’s costing too much money. But if you, or a loved one, are relying on it to have a quality of life, this is one of the most important issues you and your family face.”

Hughes did not reference Hume’s comments in her speech and her criticisms were targeted at the government’s handling of NDIS reforms, as she reflected the anxiety being felt by many families due to changes to the scheme.

The Albanese government last year negotiated with the Coalition to make several changes that would bring the NDIS down to an 8 per cent growth curve by July 2026.

New laws have restricted available services, changed planning processes and ramped up eligibility reassessments – measures designed to control growth as the scheme ballooned by as much as 22 per cent a year and was on track to cost $100 billion within a decade.

Still, the scheme’s 8 per cent growth target remains significantly larger than other federal programs, and it is the budget’s third-largest expense, on track to cost $63.6 billion by 2028-29. Reform is politically fraught given NDIS support can be life-changing for its 693,000 participants.

Hume on Sunday said the NDIS was “one of those areas in the budget that has run out of control”. “It’s been brought back to around 8 per cent ... It’s been brought under control somewhat. We think there’s more that can be done,” she said.

Treasurer Jim Chalmers said those comments “would send a shiver up the spine of a lot of people” and called for the Coalition to come clean on its plans.

Former Labor leader Bill Shorten, who led the reforms, attempted to shield the scheme from political debate before his departure in January, when he told this masthead he trusted the Coalition to run the NDIS given the “bipartisan agreement about the path of sustainability”.

But former Coalition NDIS minister Linda Reynolds, who will also leave parliament after the election, called for the Albanese government to take a fresh approach. “Instead of reforming the scheme, they have made huge, extraordinary, arbitrary cuts to people’s plans,” she said.

“As this is likely my last speech on the NDIS, I implore those opposite: after this election, stop taking the easy and politically expedient way and actually work on a multipartisan basis on this scheme.”

The senators were speaking on Tuesday as part of a request for the government to produce the financial sustainability framework behind Labor’s changes. Opposition and Greens senators have requested the document 19 times but the government has refused to provide it, claiming public interest immunity.

Greens Senator Jordon Steele-John said that document was important because it underpinned “the government’s cuts to the scheme”.

“That sustainability framework was the reason for the existence of the legislation passed by this government against the express wishes of the disability community, our families and our allies in July of last year,” he said.

“That legislation has resulted in over 26,000 reassessments of participants’ eligibility. Following these reassessments, over 10,200 participants have lost access to the scheme. These cuts have seen participants and their families thrown unceremoniously into absolute chaos.”

Hughes said that she and Steele-John “don’t agree on everything, but we do agree on sustainability”.

“I am afraid about what happens to this scheme when I leave,” Hughes said.

Cut through the noise of federal politics with news, views and expert analysis. Subscribers can sign up to our weekly Inside Politics newsletter.