Parents reveal heartbreak after NDIS halves their autistic son’s funding

A Sydney family have revealed the heartbreak of losing their home deposit and seeing their five-year-old back in diapers after the NDIS dramatically slashed funding for his autism treatment.

Disability advocates are calling for an overhaul of the “hugely problematic” National Disability Insurance Scheme as parents slammed a one-size-fits all approach to funding.

Under current guidelines, severely autistic children are losing almost half of their funding when they turn five even if their intellectual capabilities are years behind their peers.

Physical Disability Council chair Serena Ovens said she hoped the new Labor government will ensure a more individual approach to funding.

“The scheme was set up to meet an individual’s needs. Every single person with a disability should have a different package not just because of their disability but their different goals and needs. It should absolutely be looked at individually,” she said.

“There have been quite a lot of issues with the NDIS in the past few years in terms of cutting packages full stop. It’s been hugely problematic all around.”

Rachel and Taylor Savage with their children Keanu, 2, and Manaia, 5. The children are autistic and the funding for their eldest son has been slashed by half. Picture: Justin Lloyd.

Caringbah couple Rachel and Taylor Savage’s five-year-old Manaia is now back in diapers after 48 per cent of his funding was cut after his fifth birthday.

The parents slammed “unfair” rules that dramatically slash funding when a child reaches school age without factoring in their individual needs.

“I’ve been told when a child turns five, the NDIS washes their hands off you. I was prepared for that to happen. I gave them all the reports. One report highlighted that his developmental age is that of a 33-month-old child. He requires the same amount of therapy and requires a support worker to assist,” Ms Savage said.

“I then received a letter back from the NDIS that advised that his funding was cut, reasoning that he was five-years-old.

“He’s breaking furniture, extremely emotional, he’s just confused because a lot of children on autism thrive on routine. He’s not sleeping.”

Ms Savage and her husband have spent almost all of the house deposit they spent eight years saving up because they have to pay for his extensive therapy sessions out of pocket.

The Caringbah family can no longer afford a home deposit due to the extra money they’re spending on their sons’ therapy. Picture: Justin Lloyd

Without the therapy, Manaia has regressed and returned to not sleeping, wearing diapers, having emotional breakdowns and being disruptive.

Ms Savage’s younger son Keanu also has the same learning disabilities and autism and was finally accepted onto the NDIS following months of waiting after the Telegraph contacted NDIS Minister Bill Shorten about the Savage family.

“We had been saving for eight years for a house deposit, we’ve used all of it … You can make these decisions but you’re not realising what it’s doing through your family.”

New NDIS Minister Bill Shorten at NDIA HQ in Geelong. Picture: Alison Wynd

Ms Savage’s sister has started a GoFundMe page to raise funds for the family so they can continue the highly specialised therapy for their son.

Mr Shorten has vowed to assess Ms Savage’s case but did not commit to reforming the one-size-fits-all rule that is leaving families in financial distress.

It comes as opposition spokesman Michael Sukkar questioned Mr Shorten’s claims that he could make the NDIS sustainable without funding cuts to individual participants.

“I’m not going to comment on this particular matter, but I have asked for detail from the agency. I want to make NDIS decision making more transparent and fair, to make NDIS decision-making more efficient and fair, and to ensure families like the Savage’s have a better experience and can receive the supports they need,” he said.

A National Disability Insurance Agency spokesman added: “The NDIA will continue to work with the Savage family to ensure they have the appropriate supports in place. Keanu’s access request is currently being considered to ensure he has the necessary disability and early intervention supports in place.”