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‘Families feel like their child is an inconvenient dollar figure’: The MP, his daughter and the NDIS
Liberal MP Phil Thompson is in an unusual position. As a member of the federal Coalition’s shadow ministry, his political instinct tells him to support changes that will deliver budget repair and bring down the rising costs of the National Disability Insurance Scheme.
But as the father of a five-year-old autistic child, and someone whose family has been transformed by the services the scheme has provided, his heart says otherwise.
Liberal MP Phil Thompson with daughter Emery, 5, who has been helped by NDIS early intervention support.
That tension was brought into sharp focus this week, when Health and Disability Minister Mark Butler outlined major changes to the $46 billion NDIS that will result in autistic children with mild to moderate support needs being diverted onto a new program from mid-2027. The changes are part of Labor’s broader plans to bring spending growth on the NDIS down to between 5 and 6 per cent a year.
“Politicians will nod and say this sounds great, we can do it, this will be good,” Thompson says. Those politicians include government MPs and Thompson’s own colleagues. “Something’s got to give,” Liberal senator Jane Hume said on Friday. “I’m happy to talk about this in my party room to make sure Mark gets the support he needs.”
But Thompson, who is the Coalition’s new assistant spokesman for the NDIS, will be leading different conversations in his party room. “As a father, I sit here with great anxiety, going: will my child fall through the cracks? Because clearly there is no plan.”
Whether there’s a plan or not is being debated. Butler is confident a robust system of mainstream supports for children will be up and running through Medicare, schools, childcare and community centres within 24 months. He is promising no child will left behind, and has guaranteed ongoing federal funding for the new Thriving Kids scheme, starting with $2 billion. He has also offered Commonwealth resources to take over its design, so there aren’t inconsistencies between states.
But some state leaders have already seeded doubt over the scheme by saying they don’t know what it’s about. They accused Butler of leaving them in the dark. Disability groups, even those that support the idea, are sceptical it can be implemented in two years, while others have blasted a lack of consultation. Butler sought to hose down these criticisms, saying the groundwork began back in 2023, when the national cabinet agreed to start a separate disability system for children based on the advice of a consultative NDIS review.
What’s undisputed is how many parents are feeling. “There are a lot of anxious people because of it,” Thompson says. “Families have woken up in the morning getting told their family member, their child, the people that they love and care for, are going to get kicked off the NDIS and have to go through some other system that no one knows about.”
As this anxiety festered in group chats and on social media pages, Butler moved to reassure parents that children who were current NDIS participants, or joined before July 2027, would remain on the scheme, subject to the usual eligibility reassessments. But with those reassessments increasing under the National Disability Insurance Agency’s boosted resources – and moving a growing number of children off the scheme – this has brought little relief to parents who don’t yet know what Thriving Kids will look like.
Thompson is one of them. He first sought help for his daughter, Emery, when it became clear she couldn’t say the same words her older sister could at a similar age. Emery was diagnosed with level two autism and began seeing a speech pathologist and occupational therapist, before her support needs were revised up to a level three.
Emery still doesn’t communicate in full sentences. But she can now string together words thanks to intense therapy. “She said for the first time ‘I love you, Dad’ at the start of this year. It melted my heart. I knew the support she had with early intervention [is] what was doing it,” Thompson says.
Thriving Kids will change how families like his access early intervention. It is underscored by evidence showing services for children are better delivered in their own environment – such as at school and childcare – rather than in siloed clinical settings. Adding to the impetus for a new way of doing things is concern about overdiagnosis. Some experts believe children are being pushed onto the NDIS because there are few affordable supports for families outside it. One in six year 2 boys in Australia are now NDIS participants, many of whom have an autism diagnosis.
This is a fraught conversation for families, and Thompson feels that, too.
“I know people have concerns about the rate of young people that have this diagnosis ... I get the sentiment and query,” he says. “But when you live with it, when you see it and you feel it, you see it through a different lens ... I can only see my child and go: without this, she would not have been able to look me in the eye and say ‘I love you’. She would not be able to FaceTime me when I’m in Canberra and say, ‘hi Dad’.”
When Thompson returned to Canberra after the Coalition’s May election defeat, he told new Opposition Leader Sussan Ley he wanted the NDIS portfolio. He is now the shadow assistant minister for NDIS under Anne Ruston. He says he will use his position to inject his perspective into closed-door conversations with the government, as Labor seeks the Coalition’s support to bring the scheme’s growth trajectory down to 5 or 6 per cent within the four-year forward estimates.
Thompson requested responsibility for the NDIS in the opposition reshuffle.Credit: Alex Ellinghausen
“My thinking with these percentages is to make sure it’s realistic, and not just pie in the sky,” he says. “We’ve got to tell the community everything and the truth. We need to also not drop stuff on families that is terrifying because waking up [on Thursday] morning seeing it all ... Families are rightly anxious, and then hearing state ministers don’t know about it terrifies us even more,” he says.
Thompson’s other call is to be mindful of language in these policy debates. “It’s all about cost and money. I get that governments think like that, and politicians think like that, but there’s a face behind that. That child, that person, who needs support. My Emery,” he says.
“It crushes my heart to hear from families who feel like their child is an inconvenient dollar figure on the government’s budget bottom line.
“All you hear is: ‘It’s not sustainable. They cost too much. There’s people that shouldn’t be on it.
“While all those statements have some truth in it, imagine being the family who is sitting there looking at their child at the dinner table, going: all I want for them to do is live their normal life and have that support.”
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