‘No adequate safeguards’: NDIS participants under state guardianship for too long, public advocate warns

Some of Victoria’s most vulnerable are increasingly lingering under state guardianship – meant as a last resort – because of failings in the National Disability Insurance Scheme, the sector’s watchdog says in a scathing assessment of the system.

The broadside comes amid broader criticisms of how the scheme’s reassessment process for young people with disabilities leaves them, their carers and families feeling anxious, afraid and – in some cases – suicidal.

Advocates say Australia’s disability insurance scheme is letting down some of its most vulnerable clients.Credit: Marija Ercegovac

After concerns of a rise in people remaining under guardianship, Victoria’s Office of the Public Advocate undertook a review that found the process was being used to compensate for delays and red tape failings in the NDIS. Guardianship is when officers are appointed to temporarily take over the legal rights for people with significant decision-making disabilities.

Acting Public Advocate Daniel Leighton said guardianship was an extreme measure intended only as a last resort. However, he said administrative delays and the ongoing need for consent to overcome red tape, a lack of support and weak safeguards to protect vulnerable clients from a loss of services or unscrupulous operators was forcing people into extended guardianship.

In the decade to 2019, about a third of Victorians on guardianship needed an extension, but that has risen to more than half since 2020.

“If the system functioned as intended – with well-designed policies, proper safeguards, accessible advocacy, and supported decision-making – many of these guardianship appointments simply wouldn’t be necessary,” Leighton said.

“The rollout of the NDIS without adequate safeguards has resulted in the current situation, where a guardianship order may be put in place as a last resort simply because there isn’t a viable alternative available.”

Leighton’s office has called on the National Disability Insurance Agency to reform its consent frameworks, fund supported decision-making, and improve safeguards, so vulnerable clients are not forced to relinquish their rights or face the prospect of losing vital services.

There are also calls for the NDIA to overhaul the way it conducts eligibility reassessments, particularly for families who have children with severe autism.

Children and Young People with Disability Australia (CYDA) recently surveyed more than 200 young people and their caregivers given the current debate around participants exiting the scheme without long-awaited foundational supports in place.

Foundational supports – which were meant to be rolled out this month but won’t be in place until at least December – involve providing children who need it the extra support in settings such as daycare programs instead of needing a full NDIS plan.

CYDA found that almost all respondents believed the NDIS reassessment process was unfair or unreasonable, while more than half said it left them feeling worried and afraid. Some respondents even reported feeling suicidal.

The majority of respondents who had received an eligibility reassessment letter either were or had a child with autism, leading to concerns that certain cohorts were bearing the brunt of the government’s bid to drive down costs.

Perth woman Mandaii Burgess, who has a seven-year-old with level-three autism, said her son’s therapy supports were recently cut quite significantly.

“He has had a regression in communication and daily living skills,” Burgess said. “There are times when I can’t get him to talk to me at all. He needs 24/7 supervision. I can’t let him out of my sight at all.”

The mother of two is challenging the assessment but says the process has cost her sleep.

“My mental health has been significantly impacted.”

CYDA chief executive Skye Kakoschke-Moore said the reassessment processes needed a complete redesign.

“So often when we talk about the NDIS, we refer to it in terms of numbers, stats and dollar amounts. But underneath all those numbers are real families and real children,” Kakoschke-Moore said.

An NDIA spokesperson said the agency was determined to strengthen the scheme – including for those on guardianship orders and undergoing eligibility reassessments – through feedback and co-design with people with lived experience.

“While guardianship orders are legislated and implemented through the state and territory governments, the NDIA maintains that guardianship orders (or the reappointment of a guardian) should only occur as a last resort, where there is no less restrictive alternative to protect and promote the human rights of an adult with disability.”

A federal government spokesperson said the timeline for providing evidence as part of NDIS eligibility reassessments had already been extended from 29 to 90 days.

“We want the NDIS to be the best it can be,” they said.

“We are focused on ensuring the NDIS delivers better, consistent and fair decisions, operates transparently and protects the safety and upholds the rights of participants.”

The NDIS cost the government more than $42 billion last year. The annual bill is expected to rise to $92.7 billion by mid-2034.

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