The NDIS has given Joe vital social skills. Funding cuts leave his mother fearing how he will ‘do life’

Joe Barham’s favourite drink to make for customers is an iced chocolate. But flat whites are also popular, he says, when the weather cools down in the typically humid Gold Coast.

The 22-year-old has been part of a program used by national disability insurance scheme participants to learn useful skills and spend time in the community.

Joe, who has Down’s syndrome, has been in the program for more than four years. When he’s not learning to be a barista, he’s out working in the community garden or collecting cans to recycle for extra change.

It gets him out of the house and gives the young adult much-needed social time with peers, says his mother, Kerry.

But while the programs are exciting for Joe, they also teach him key life skills to get him through adulthood, the mother of three says.

“It’s almost like hiding the medicine in a teaspoon of honey,” Kerry says. “Joe goes off to his programs feeling like he is going to a job.

“We’re trying to teach him money skills, communication skills, independence … it’s all life skills that he doesn’t want to understand or learn from me, because I’m his mother.”

The programs Joe uses are part of a subset some NDIS participants receive for social and community participation. The funding varies and can depend on participants’ primary disability category.

The federal government’s own analysis has shown nearly a third of individual NDIS budgets for people with Down’s syndrome go towards social and community participation.

On average, about $28,900 a year goes to each of the 9,000 or so participants with Down’s syndrome for these programs.

But there’s fear their enrolment in these life-changing activities could become financially out of reach if the government proceeds with plans to slash them by 50% from later this year.

‘It’s really life-changing’

The financial sustainability of the NDIS has been square in the minds of governments since its full implementation in 2020.

In that time, the cost of the program has increased from around $20bn a year to $50bn this financial year.

The government has estimated it will cost $117bn by 2036-37 if no changes are made.

Social and community participation budgets have accounted for around a quarter of the annual NDIS budget since 2021, according to government data.

Under a proposal by the federal government introduced last month, the NDIS minister, Mark Butler, would slash all social and community participation budgets by 50% for participants to save $13.2bn from July to June 2030.

Butler has said the decision to reduce community participation funding was made to protect core daily supports – such as showering, meal preparation, hygiene and continence.

A government spokesperson has said not everyone will be subject to a 50% budget cut, as some participants were already not using 100% of their funding allocation.

One of those is 15-year-old Felix, who also has Down’s syndrome and lives in rural South Australia with his family.

As there are limited services near their home 2.5 hours from Adelaide, Felix travels to the state’s capital to participate in programs, which his mother, Kylie, says are crucial for his development and his inclusion in the community.

“I would be using it all the time, if we had the workers to do it,” she says. “It’s really life-changing, because some of these kids, particularly like us rural families, the kids are with us all the time.

“It’s so hard because I see Felix so sad when he sees kids his age riding past on their bikes, or all out walking around together, and he’s not part of that.

“So, for him, it’s increased his confidence, and his sense of independence and wellbeing.”

The latest NDIA quarterly report showed participants used about 86% of their allocated social and community participation budgets in the quarter to March 2026.

‘If that disappears, everything disappears’

The government’s proposed changes have been under a Senate inquiry’s microscope this month.

Disability advocacy groups, human rights groups, industry experts and participants have been highly critical of the plan.

The government’s own reform advisory committee warned of the “material harm” it could cause people with disabilities.

The disability discrimination commissioner, Rosemary Kayess, said measures to reduce flexibility and tailored supports could “promote or maintain segregation and institutionalisation, rather than supporting inclusion in the community”.

For Joe and Kerry, the changes are more tangible. While some of his overall NDIS budget caters for the physical impairment associated with Down’s syndrome, much of the funding goes towards his weekly programs.

“If that disappears, everything disappears,” Kerry says. “We know him best, we know his talents, his strengths, and what he needs on a day-to-day basis.

“He’s a very social individual … if he didn’t have that social networking, I’m just not sure how we would do life for him.”

Before the NDIS, Kerry says the family, who runs a small business, covered the costs themselves, where they could, but the scheme has given Joe a consistent weekly schedule.

A 50% reduction to funding will mean Kerry will have to pick and choose the programs Joe can continue.

Kerry says she wishes the government’s proposal focused on reining in providers who had taken advantage of the generous scheme’s flexibility to their financial benefit, rather than stripping away vital services.

“The NDIS has been the most amazing thing to people, us included, however it makes me really cross and really peeved off that people have taken it and abused it, and we’re now looking at it disappearing,” Kerry says.

“I don’t think these selfish people understand or care about how the impact of what they’ve done is going to cause people like Joe.”