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.
A Senate committee is holding three days of public hearings into the draft legislation. ( ABC News: Patrick Stone )
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.
Deanne Burrows says many parents who have children with disability are already exhausted. ( ABC News: Billy Draper )
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.
Brodie Burrows's mum Deanne says he needs 24-7 support, including with washing. ( ABC News: Billy Draper )
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…
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