NDIS inquiry warned changes could push families into crisis and towards child protection services

Exhausted families could be plunged further into crisis and have more interactions with child protection services under the Albanese government's proposed overhaul of the National Disability Insurance Scheme (NDIS), advocates have told an inquiry.

A Senate inquiry into dramatic NDIS changes received more than 4,000 written submissions in just over a fortnight and is now holding three days of public hearings.

The sweeping changes have been designed to make the now-$50 billion NDIS more sustainable, following concerns the scheme was growing faster than Medicare, losing public support and on track to cost $70 billion by the end of the decade.

The changes would result in about 300,000 people either being removed or prevented from accessing the scheme over the next four years, saving more than $38 billion over that time.

This morning, disability groups told the first day of public hearings in Melbourne the changes would be dangerous and result in costs shifting to already oversubscribed services.

Children and Young People with Disability Australia chief executive Skye Kakoschke-Moore said a change stating that parents were responsible for providing "substantial care and support" for their children would shift more work onto families.

"Substantial care and support" has been defined by the bill as including supervision, personal care, behavioural support and "other assistance … that, regardless of the child's disability, would reasonably be expected of a parent of a child of a similar age".

"Expecting a parent to single-handedly provide the same level of care and support as a team of skilled, qualified, experienced support workers risks putting that family into further crisis and may lead to increased instances of carer burnout," Ms Kakoschke-Moore said.

She said families had already reported being told by staff at the agency running the NDIS "that if they weren't able to fulfil their parental responsibility, then they would be referred to child protective services".

"What we're really scared will happen here is that kind of position is going to be taken more often and that more families will feel under threat because they're reaching out for help because they're not able to cope, but by doing so, it may indeed place them in a position of incredible vulnerability," she said.

Those concerns are also keeping Victorian mother Deanne Burrows up at night.

Her son Brodie is non-verbal and lives with complex conditions including intellectual disability and autism.

She said Brodie, 16, needed around-the-clock care, including support with feeding, bathing and communication.

Ms Burrows said she understood caring for Brodie was her responsibility as a parent, but she also needed help, and the possibility of having it stripped away angered her.

"It's definitely a slap in the face," she said.

Ms Burrows said she often felt like a walking, talking therapist as she had to be across everything required to train support staff, including how to safely feed and transfer Brodie in and out of his wheelchair.

She said she knew of many other families currently not coping, and while they loved their children, they were reaching breaking point.

"Nobody sees what happens behind closed doors," she said.

"The amount of [work] to support a child with disability is excessive … [politicians] making these decisions have no concept of the day to day lives of parents."

The explanatory notes accompanying the bill state families and other informal supports would not be expected to deliver care themselves if it risked an injury occurring.

In a statement, a government spokesperson said more services would be set up outside the NDIS when the Thriving Kids program begins rolling out in October.

"We are treating as a matter of urgency the need to provide parents with a more suitable system of broad-based mainstream support for their children," the spokesperson said.

'Dubious policy logic'

The Senate committee also heard about concerns regarding proposals to hand the NDIS minister of the day sweeping new powers, enable automated decision-making, and to slash the amount participants could spend on social and community supports such as support workers to take them to work, the doctor or supermarket.

Inclusion Australia policy officer Luke Nelson, an NDIS participant who lives with cerebral palsy, worried the latter would prevent him from getting up in the morning.

"The NDIS was designed for people with disability to live an ordinary life. I live an ordinary life because of the support I receive through the NDIS," he said.

"If these cuts go ahead, I'm afraid that people with intellectual disability and their families will lose their human rights."

A third of the government's overall projected savings is expected to come from a planned 50 per cent cut to social and community participation budgets and a 10 per cent cut to capacity building supports such as therapies, according to the Grattan Institute.

In an article published this morning, program director Sam Bennett said social and community support made up more than a quarter of the average plan for people with a vision impairment, psychosocial disability, Down syndrome, or intellectual disability.

He said the case for such a move had not been sufficiently made and it was "underpinned by dubious policy logic".

"The scheme can be put on a sustainable footing for the long term without resorting to blunt cuts to add to budget savings in the short term," he wrote.

Call for pause

Advocates have called for a pause to the changes for greater co-design, although the government wants them passed as soon as possible.

Labor is facing opposition from the Coalition and Greens, who have both expressed concern that many details appear to be left to the discretion of individuals or rules that have not been created yet.

Coalition NDIS spokesperson Melissa McIntosh said the government needed to provide more detail before the opposition would offer its support.

"We want a sustainable NDIS, but clearly the government did not consult with the disability community," she told reporters this morning.

"It's really important these three days [of hearings] is three days of advocates, participants and organisations coming forward to express their views."

Greens spokesperson Jordon Steele-John said the party would continue to oppose the bill.

"Every single witness we have heard from today has said, 'This bill needs to be withdrawn', 'This bill must not pass in its current form', or 'The Senate needs more time to consider the legislation'," he told reporters.

"We must, as a parliament, push back on a government who's trying to ram this through while they think nobody is looking."

Officials, including from the National Disability Insurance Agency and the Department of Health, are scheduled to give evidence to the committee in the coming days.

NDIS Minister Jenny McAllister told the Senate last week the government was committed to working with the disability community and other stakeholders as the changes progressed.

Senior Labor minister Murray Watt said the government would continue to talk with the other parties about the legislation.

"The reality is that the NDIS is growing at an unsustainable rate and if we don't take action now, we risk a situation in the future where a future government decides to make massive unfair cuts to the NDIS and deprive people of the support that they require," he told reporters at Parliament House.

"Labor created the NDIS. We are strong supporters of the NDIS. But we do need to make sure that it's sustainable for the future."

The inquiry into the bill will report by June 16.