‘Flawed, unethical and dangerous’: new NDIS assessments risk traumatising the vulnerable

Peta Lambert is one of the few Australians who can speak from experience about what some say will be the biggest change to the National Disability Insurance Scheme since it was introduced.

As part of a controversial plan the government says will make it fairer, NDIS participants will no longer submit reports from their own treating specialists to gain access to the landmark scheme.

Instead, they will undertake a mandatory interview of about three hours with an outsourced, government-contracted allied health professional.

“I think it is a rotten idea,” Lambert, 46, says. “The NDIA should bugger off and leave people with disability with enough money to be able to live an ordinary life like everyone else in Australia.”

Lambert, who took part in an independent assessments pilot scheme with her mother, Laurel, lives with cerebral palsy, an intellectual disability, a hearing impairment and epilepsy.

By speaking out in the Guardian this weekend, the Lambert family joins a growing list of critics of the plan that includes a united disability sector, Labor, the Greens, a past NDIS executive and several state governments.

The new mandatory but free assessments will begin in the middle of the year and will apply to new applicants and, later, the 440,000 participants already on the scheme.

The National Disability Insurance Agency insists they are aimed at addressing consistency issues and inequality within the scheme, cutting costs or reducing package sizes.

But like many critics, Peta Lambert is not convinced. “I think they are doing this so they can take money away from people with disability and use it for something else,” she says in a video interview for the advocacy organisation Every Australia Counts, obtained by Guardian Australia.

“I think it is to change the way they operate so it doesn’t cost the government as much money.”

And while the NDIA claims feedback from the pilot has been positive, Laurel Lambert argues the questionnaires – known as assessment tools – are too blunt to provide an accurate picture of Peta’s needs.

Laurel Lambert reels off some of the questions: “‘Do you get along with your mum?’ Peta just said yes. ‘Can you go up some stairs? Can you concentrate for 10 minutes?’ God knows I can’t sometimes.

“As soon as Peta would respond, the assessor would just punch in a button on the computer,” Lambert adds. “There was no response or asking for any detail.”

The problem, according to disability groups who have been sounding the alarm for months about the new policy, is the answers to these questions can be more complicated than a yes or no.

Laurel Lambert points to another example: “Can you catch a bus?”

“Well, what bus? There are a lot of people that are trained to catch one bus only, lots of people with intellectual disability, for instance,” she says.

The National Disability Insurance Agency has suggested the free assessments will save participants the cost of seeking medical reports and therefore reduce inequality and inconsistency in the system.

It says participants will spend “less time discussing specific supports with the agency, and more time on how to best implement their plans”.

“The NDIA reviewed over 100 tools, and spoke with academics, allied health professionals and the disability community to select disability-neutral tools that focus on understanding a person’s functional capacity,” it says.

The former NDIS minister, Stuart Robert, has also argued the assessments were recommended in a review of the NDIS Act conducted by former finance department chief David Tune in 2018.

But this week serious questions were raised about that report. Documents released under freedom of information, obtained by Labor and first reported by Nine newspapers this week, appear to show a section of the report recommending introduction of the assessments was inserted by public servants.

Labor’s NDIS spokesperson, Bill Shorten, who has been vigorously campaigning against the policy, says it shows the report was a “sham”, a claim rejected by the office of the new NDIS minister, Linda Reynolds.

The government is pushing ahead with the plan despite the fact a parliamentary inquiry is still examining the policy.

The submissions to the inquiry, many of which were published this week, reveal widespread community concern.

Domestic Violence Victoria, for example, warns victim-survivors dealing with trauma “may be unable to communicate their needs in a single session and be disempowered by this approach”.

The submission also warns “being assessed by a stranger and having to retell their story can be re-traumatising”.

In an explosive submission, Marie Johnson, the former head of the NDIS Technology Authority, argues the independent assessments plan was “utterly flawed, unethical and dangerous concept on every level”.

Johnson also suggests text messages sent to some participants asking them to take part in the pilot were “unethical” and represented “scam-like” tactics.

The messages, which referred to an “exclusive invitation”, were “effectively ‘luring’ [people] into participating”, Johnson says.

In a change announced in February, participants now get $150 in exchange for taking part in the pilot.

The NDIA rejected Johnson’s claims in a statement to Innovation Australia, which first reported her comments this week. The agency says the pilot was voluntary and those taking part could withdraw at any point.

Laurel Lambert says she is aware of another person with disability who had been pestered by the agency to take part in the pilot.

“She has been bombarded with them asking her to go and do it,” Lambert says. “[The woman] has a major anxiety issue. And it has got her into such a state … that she’s now asked me to tell them, ‘No, don’t please don’t ask her again’.”

The parliamentary inquiry is expected to hold hearings this month where a wide array of critics will probably give evidence.

In her submission, Colleen Pearce, Victoria’s Public Advocate, has told MPs the assessments are “serious threat to the original intention and proper functioning of the NDIS” and could particularly impact on people with cognitive impairment.

The Australian Physiotherapy Association and the Royal Australian and New Zealand College of Psychiatrists have also lined up against the proposal while the Aboriginal Health Council of South Australia believes the assessments could see Indigenous communities “further disengage with the NDIS”.

Some who have taken part in the pilot talk of mismatches between the assessors and the participants.

Laurel Lambert, for example, says her daughter’s assessor was a speech pathologist. Aaron Carpenter, who lives with autism and spoke to the Guardian last month, was assessed by a physiotherapist.

The agency says participants will be “matched to a therapist or clinician that has the right skills, experience and training to complete the assessment”.

“All assessors will be qualified to administer the assessment tools,” it says.

Peta Lambert, who lives in her own home with another person with disability, is still worried.

She says none of the questions helped her to “feel like I am working hard to be an independent woman”.

“Nothing was positive,” she says. “None of it will show them what I need to help me be who I want to be.”