Aidyn is eight. For anyone who doesn\u2019t know him well, his speech is impossible to understand. He has level-two autism, an intellectual disability and an eating disorder. Two years ago, he had a gastrostomy tube inserted into his stomach because he was malnourished.<\/p>\n
His coordinator and advocate, Jayde Parker, notified the national disability insurance scheme of a change in the family\u2019s circumstances and asked for support for Aidyn\u2019s mother, who also has autism.<\/p>\n
\u201cUp until then, they had support coordination, an OT, physio, a dietitian and a feeding therapist,\u201d says Parker, who has been granted permission by the family to speak on their behalf.<\/p>\n
\u201cAnd they also had a nurse to come in once a month.<\/p>\n
\u201cThen [the government] took away everything \u2013 they completely cut therapy funding [down] to seven hours of a dietitian in a year.<\/p>\n
\u201cWhen Aidyn needed it the most, they just kicked him off.\u201d<\/p>\n
Last week, the health minister, Mark Butler, announced that about 160,000 people are expected to be removed<\/a> from the NDIS by 2030 as part of a massive overhaul to curb ballooning costs. The government says the overhaul is vital to preserve the long-term viability of the NDIS.<\/p>\n But families and advocates say their plans are already being cut or rejected and they are being told to wait to get support from the new national foundational program, Thriving Kids<\/a>.<\/p>\n As families struggle to get the right level of support from the NDIS, they are finding no other alternatives to help them and worry the replacement programs will fall short.<\/p>\n People who no longer meet the as-yet-unannounced eligibility requirements for the NDIS will be redirected to programs such as Thriving Kids, co-run by the states and territories. Thriving Kids is designed to remove children with mild autism and other developmental conditions from the NDIS, and is expected to be fully set up by 2028.<\/p>\n Parker spent two years fighting the decision about Aidyn\u2019s care, finally winning in the administrative review tribunal at the beginning of this year. Six weeks ago, about $120,000 was put back into Aidyn\u2019s plan but \u2013 while the case was being reviewed \u2013 in October the National Disability<\/a> Insurance Agency (NDIA) told Aidyn\u2019s mother to wait for Thriving Kids, Parker says.<\/p>\n She says it felt as if the NDIA wanted to block Aidyn from the scheme.<\/p>\n Last week the health minister, Mark Butler, said cuts to the NDIS were vital to preserve the long-term viability of the scheme. Photograph: Mick Tsikas\/AAP<\/p>\n \u201c[This was all] because Thriving Kids would take over,\u201d Parker says.<\/p>\n People with autism are the fastest-growing cohort of the NDIS, making up 42% of the entire scheme. The majority (66%) of autistic participants who were given access to the scheme in the quarter ending in December 2025 were under 14.<\/p>\n Data compiled by the Australian Neurodivergent Parents Association shows that children with developmental delay are being removed from the NDIS faster than they are being let in.<\/p>\n Exits have risen sharply each calendar year \u2013 7,270 in the year ending December 2023, 19,412 in 2024 and 40,900 in the year ending December 2025.<\/p>\n The quarterly data on developmental delay, which includes children aged up to seven, shows the number of participants grew from 56,811 on 21 December 2022 to a peak of 88,112 in March 2025, followed by three straight quarters of acceleration in the opposite direction, ending at 70,602 by December 2025.<\/p>\n The Australian Neurodivergent Parents Association president, Sarah Langston, says nearly 12,000 children with developmental delays have been removed from individualised support before the replacement system kicks in.<\/p>\n \u201cWhat we have seen is that, since the end of 2024, about 29,000 participants have either partially or totally lost access to NDIS supports,\u201d Langston says.<\/p>\n \u201cA big chunk of those are kids. And in terms of the kids, what has been happening is what other advocates and I would call constructive removal from the scheme.<\/p>\n \u201cThat\u2019s where a child would remain eligible, they remain in name on the NDIS, but their plan is gutted. So their support is just absolutely decimated. That\u2019s the majority of what we\u2019re seeing.\u201d<\/p>\n