NDIS participants, including some with intellectual disabilities, were “lured” into participating in trials of the controversial new independent assessments with “scam-like” text messages, former NDIS Technology Authority chief Marie Johnson says.

The National Disability Insurance Agency (NDIA) is currently conducting a second pilot of the independent assessments scheme, a fundamental overhaul of the National Disability Insurance Scheme (NDIS) involving the use of independent assessors to decide what participant’s needs are and how much funding they will receive, replacing the use of existing doctors and medical reports.

The first pilot saw 600 of these assessments completed, with participants having a primary disability of Autism Spectrum Disorder, an intellectual disability or a psychosocial disability. The second pilot is ongoing, with the NDIA aiming to complete 4000 assessments.

The NDIA is inviting existing participants to take part in the pilot through text messages, cold calls and emails, with offers of $150 in exchange for participation. The text messages have included the phrase “exclusive invitation”, and have been sent directly to NDIS participants.

Ms Johnson, who is now the chief executive of the Centre for Digital Business, said the NDIA is effectively “luring” participants into being involved in the pilots by using tactics typically used by scammers or in retail promotions.

“It was these quite chaotic communications to participants and their families. People would get multiple text messages and this is clearly classic scamming strategies, and think about the people that are receiving these,” Ms Johnson told InnovationAus.

Ms Johnson raised concerns with the issue in a recent submission to a Joint Standing Committee inquiry into the independent assessments.

“It is utterly unethical and verging on maladministration that this type of communication is used at all, let alone in communications targeted at people with disability, and which would include vulnerable people with psychosocial disability,” Ms Johnson said in the submission.

“This is a direct consequence of the lack of an ethics framework and lack of ethics oversight more broadly. The scam-like approaches used by the NDIA in these text messages to participants…is not only counter to the efforts of the Office of the eSafety Commissioner, but exposes participants to harm more broadly by creating confusion as to what is or is not a scam.”

In response, an NDIA spokesperson said the agency “rejected the premise” that participants were “lured” into the pilots, saying they are voluntary and those taking part can withdraw at any part.

Ms Johnson’s daughter accesses the NDIS, and she said she has received text messages about the pilots, along with follow-up cold calls.

“I’ve received texts on behalf of my daughter, but you never respond to them because you just don’t know if it’s a scam. But many of these people may have an intellectual or cognitive disability. For the agency to say ‘we’re sending this to everybody’ is utterly unethical because you don’t know the state of mind or ability of the person,” Ms Johnson told InnovationAus.

“People are getting bombarded with these things. The agency is trying to get as many people signed up to do these pilots as possible – it was really a mass marketing type of communications campaign. People say they’re utterly overwhelmed by it.”

People with Disabilities Australia president Samantha Connor, who also runs the NDIS Grassroots Facebook group which has 55,000 members, said she has heard from multiple people who felt there were being “bullied” into taking part in the trial, and offered “bribes”.

“The way that the text messages are constructed is a problem. Until recently people weren’t aware of the issue at all, they weren’t aware that they were conducting the trial that might significantly impact their funding, they just said ‘look you’ll get $150 to be a part of this new pilot’,” Ms Connor told InnovationAus.

Participants were contacted via letters, emails, phone calls and SMS, an NDIA spokesperson said.

“Participation in the independent assessment pilot has been by invitation, at which time people have the option to voluntarily opt in or decline to participate,” the spokesperson told InnovationAus.

Ms Johnson said she also received cold calls from private numbers about the independent assessment pilot, with the caller asking for information about the NDIS.

“That’s like asking for my bank account number. I’m able to respond back to them that way but a great many people aren’t. This might be the NDIS but it then creates a problem for people if they are subject to a scam and they respond,” she said.

There are also concerns around the NDIA’s data handling practice around this trial. When someone clicks the link in the text message sent by the agency about this, the form states that the server storing information on the trial is hosted in Chicago.

“From a data sovereignty perspective that’s pretty bad – I don’t think that is in line with privacy data governance,” Ms Johnson said.

“It raises questions about the independent assessments, how they’re conducted and where the data is gathered.”

An NDIA spokesperson said the data is “stored in line with the NDIS privacy policy”.

Autism Awareness Australia CEO Nicole Rogerson initially agreed to take part in an independent assessment trial for her son, who has autism, earlier this year. After voluntarily agreeing to take part in the pilot, Ms Rogerson eventually opted to withdraw from it.

“Once this thing rolls out, there’s no right of appeal, people have to deal with a stranger coming into their home,” Ms Rogerson told InnovationAus.

“The government has just decided to completely disregard any clinical input from Australia’s leading disability experts – they would rather automate it. This is the same minister who gave us robodebt.”

The NDIA is not listening to the widespread criticism of the trial and new assessments scheme, Ms Rogerson said.

“This is the first time I feel really pointless in this process. I’ve never felt like our opinions, feedback and knowledge has been more dismissed,” she said.

“The government just doesn’t see people with a disability as humans who need to be carefully managed and supported. They see them as a budget blackhole that needs to be stopped. It can be better than that.

“The real reality is it’s going to affect peoples’ lives and mental health. The government can forge ahead with it but we’re going to remind them every step of the way they’re going to make a terrible decision with a real impact on Australians’ lives.”

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