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As parliament debated the future of the National Disability Insurance Scheme this week, Ali Kuylaars was worried.

Her two children, both diagnosed with autism, could be among thousands across the country removed from the federal scheme by January 2028.

But Isaac, 14, and Arlo, eight, live in Queensland, the last holdout state not to sign up for a new replacement scheme, known as Thriving Kids.

Intended to assist children with mild to moderate autism or developmental delays up to the age of nine, Thriving Kids is scheduled to be implemented from October this year, fully replacing the NDIS for those children by 2028.

But the Queensland premier, David Crisafulli, still has questions about the new program, and says he won’t sign up without answers. Some are concerned that the dispute won’t be resolved quickly enough, leaving Queensland children to fall into a gap between ineligibility for the NDIS and a delayed implementation of Thriving Kids.

But others are concerned about the new scheme itself, and argue the state government is taking the right approach by demanding more information.

Like most parents, Kuylaars said losing NDIS coverage without an alternative would be a bad outcome – but she backs the state’s approach.

“You can’t remove supports and not have some sort of alternative system in place. Does that mean that we have to have Thriving Kids? I don’t think so,” she says.

“The entire community are concerned about Thriving Kids. We don’t have enough clarity about what it looks like. We don’t have enough clarity about what types of supports will be accessible. We don’t at all understand how this is going to be implemented”.

Deejay Egan is the group chief executive officer for DCC Group, an NDIS provider for about 700 Queensland children, primarily Indigenous children.

Multiple parents and care-givers have approached them, anxious and uncertain about the possibility of a drop-off in supports, and about the new program.

“There is a lot of uncertainty across the board because if we don’t get an agreement, then, how do we service our participants?” he says.

“How do we communicate that to our clients, caregivers, and parents to be able to navigate that when we ourselves don’t have that information?”

Egan says cutting off supports suddenly in January could risk Queensland children falling behind those in other states, impose greater financial pressure on parents, or even reduce their ability to engage in education.

“I think will have a huge impact on their health,” he says.

It’s unclear whether the dispute will be resolved by October.

Crisafulli told reporters on Thursday that thinks there will be a deal, but that the state would take its time to do things “the right way”.

“I can’t be a deal that allows two levels of government to just say to vulnerable people: ‘Oh well, there’s been some cosy deal done, and we wash your hands of you’ … and that’s what will happen if we don’t get the deal right,” he says.

Questions asked by the state include how the scheme will define mild to moderate autism and what will happen children over the age of 9, once they age out of the program.

The federal health minister, Mark Butler, said on Thursday that the definition would be the result of “collective work by all governments” and that a draft definition would be provided “within days” to all states and territories.

“It is not commonwealth work. It is not a negotiation between the commonwealth and Queensland, in particular,” he said.

But it’s also unclear how much work Queensland has done to prepare. Asked in parliamentary estimates last month what the government’s workforce targets, budgets and governance arrangements for Thriving Kids were, Belinda Drew, the director-general of the department of families, seniors, disability and child services, told parliament they were “still subject to government consideration”.

Butler said the federal government had made clear how many children the state programs would need to cover.

“Every other jurisdiction has been able to get on with the work of developing their programs, finalising implementation plans. They know how much money they’re getting from the Commonwealth to deliver their programs. It’s time that Queensland got on board too,” he said.

Associate prof Kathy Ellen, from the university of Queensland, said the reform has been rushed and it was not clear what would happen if the program was implemented without Queensland signing up, which was causing uncertainty and stress for families.

“I really do think that both the federal and the state governments have a responsibility to work together about this because, in the end, it’s the families and the young people are going to be struggling with all of it if they don’t,” she says.