‘Unethical’: NDIS participants ‘lured’ into trials

Denham Sadler
Senior Reporter

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.

Marie Johnson
Marie Johnson: NDIS participants have been “lured” into pilots

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.”

Do you know more? Contact James Riley via Email or Signal.

  1. Frances 6 days ago

    It is ludicrous that this government is still in the driver’s seat. Time and time again they are taking the wrong approach. Instead of robbing the poor and disabled perhaps they could be better served by pulling their belts tighter and giving back to the poor and disabled. Unless you are disabled or associated with someone who is, it is hard for others to comprehend the status of their lives. My disability is eyesight and although I can still see a little bit, I am legally blind. I can think for myself and articulate beyond five lettered words. Many cannot and it is an abomination that this government uses this lack of speech and understanding against these claiments of disability. Having compassion doesn’t equate to understanding the huge and sometimes enormous constraints these people live with. Anyone being of a higher standing in this country doesn’t have the right to play around with the well being and emotions of the poor and disabled. I say the poor because if you weren’t poor you would not put yourself through the rigours of applying for NDIS in the first place. It is only the very vulnerable who are desperate enough to really need this. Let’s hope Linda Reynolds can do better.

  2. Nathan Pallavicini 6 days ago

    As a father with a heavily disabled 4year old.

    We have constantly battled NDIS to get the support we and our daughter needs most to provide her with the best possible outcomes for her, us and the wider community.

    Nearly every month we are baffled by the responses we get from our eiec partner and NDIA.

    It took us 9 months to have a formal complaint actioned, one the complaint was actioned the NDIA rushed us through the process and offered an extra 5 hours of support workers and then proceeded to tell us how lucky we are.

    The proposed and hidden changes which this liberal government is trying to implement is going to destroy the lives of millions and removing a large amount of government spending from the economy.

    We have also received the offer of $150 to join the pilot program, it is disgusting how the government is trying to lure in people with money only to then reassess their case an remove more money out of their pockets.

    This tactic is only to target the participants below the poverty line because they need that extra $150. That could go to food, rent, bills.

  3. Andrew 7 days ago

    I find it hard to use the words ethical and this government in the same sentence. I was gobsmacked (but maybe not surprised) to hear that they tampered with the Tune Review 2019. David Tune never said that compulsory assessments should be forced on all participants. The government modified his report to suit their own agenda. It would appear that this government is intent on destroying the original principles of the NDIS and treating disabled people like welfare recipients. Us disabled and our advocates need everyone’s help to convince this government to stop these proposed changes and engage in proper consultation if they are truly interested in reforms to make the NDIS better.

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