‘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.

5 Comments
  1. Kara Gandolfo 4 months ago
    Reply

    The proposed Independant Assessments are akin to the Workcover workers injury compensation scheme whereby the workcover insurer for your employer can simply decide to review your entitlements and capacity and disregard your GP, Treating psychiatrist and any other Mental Health Professionals, support you have via a Compulsory IME – independant medical examination. Sound Familiar ??
    Under an IME you must attend and may have a support person with you in the room but the IME may write a report that does not reflect actual true and daily capacities, only their subjective view of you in tbeir office for 50mins and then they get paid for there report which always seems to negate your lived experience and they use wording that allows their payee, the insurer to write you off and end any further entitlements which is very much like the proposed role of the Independant Assessor.
    How can you trust a govt insurance scheme for humans with a range of disabilities when state , federal and private employees when injured, assaulted in the course of their employment and left with long lasting psychosocial incapacity such as Post Traumatic Stress Disorder, Chronic Depression and Anxiety, social isolation have been told they can have medical expences for medication long term but any Actual Support Programs such as PTSD Recovery Programs and more Psychiatric funding has been denied due to that wonderpus all powerful INEDEPENDANT medical exam report or in the NDIA Scheme of things the equivalent INDEPENDANT ASSESSORS.

    Sound familiar.
    CONGRATULATULATIONS TO THE MANY ‘IME’s who are waged funded by workcover insurers’.
    Not a bad days work for a 1hr appt, report of 1-3pages and several hundreds of dollars later.
    Nothing Unethical about it unless of course you actually agree with further traumatising vulnerable workers and people with disabilities.
    WE ARE ALL HUMAN.
    KEEP YOUR HANDS OFF REVIEWS THAT DO NOT TAKE INTO ACCOUNT THE PWD AND THEIR ALLIED HEALTHCARE, MULTIDISCIPLINARY TEAM, ECEI TEAMS OF HIGHLY SKILLED HEALTH PROFESSIONALS WHO ARE HELPING EVERYONE WHO NEEDS SUPPORT TO GET THE RIGHT SUPPORTS, VERY REASONABLE AND VERY NECESSARY SUPPORTS TO LIVE AS NORMAL A LIFE AS POSDIBLE, AS INDEPENDANTLY AS IS POSSIBLE AND TO BE INCLUDED IN ALL MAINSTREAM ACTIVITIES OF LIVING EXPERIENCES THAT PEOPLE WITHOUT A DISABILITY TAKE VERY MUCH FOR GRANTED EVERY DAY THEY PUT THEIR FEET ON THE FLOOR AND WALK AROUND FREELY WITH AN ABUNDANCE OF PHYSICAL, INTELLECTUAL, PSYCHOSOCIAL FREEDOMS AND UNLIMITED POTENTIAL.
    WE MUST NOT GO BACK TO DISABILITY AS A ONE SIZE, ONE DISABILITY FITS ALL OUTDATED AND INHUMANE VIEW AND BE RESOLUTE IN PURSUING THE GOALS AND ACTS THAT FIRST MADE THIS NDIS FOR PWD POSSIBLE TO BE VIEWED EACH FIRST AS AN INDEPENDANT HUMAN BEING WITH A RIGHT TO HAVE A SAY IN THEIR LIFE, CHOICES AND CONTROLS MADE ABOUT THEIR LIVES THAT MAY NOT ALWAYS BE IN LINE WITH POLITICAL OR RELIGIOUS VIEWS BECAUSE ABOVE ALL WE RECOGNISE IN AUSTRALIA THE RIGHTS OF THE HUMAN, THE RIGHTS OF THE CHILD AND THE RIGHTS OF PWD, PEOPLE WITH A DISABILITY TO HAVE ACCESS TO MAINSTREAM INCLUSIVE , ACCESSIBLE AND TIMELY ACCESS TO SUPPORTS.
    AS IS OUR MEDICARE SYSTEM WORLDCLASS AND FUNDED, SO TO IS THE NDIS AND ANYTHING LESS FOR NDIS WOULD BE CREATING SYSTEMIC FAILINGS THAT SET US BACK 40-50 YEARS WITH NO CHOICE, NO INDEPENDANCE, NO CONTROL BUT BEING TOLD THIS IS IT…
    WE HAVE MOVED ON FROM BIG INSTITUTIONS AND RECOGNISED THE SEVERE HARM, ACTUAL COST AND IT DOES NOTHING TO SECURE A SAFE, EFFECTIVE, EQUAL AND INDEPENDANT PROCESS DTIVEN BY FIRST PERSON CENTRED GOALS AND NOT THE GOALS SET BY AN AGENCY, INSURANCE SCHEME TO CULL, COST CUT. START FROM WITHIN THE AGENCY AND THE SET GUIDE PRICES VS PRIVATE FEES AND DO THE MATHS, YOU CAN ACHIEVE AN EQUITABLE, AFFORDABLE SCHEME AND GIVE DIGNITY BACK AND LIMIT ANY FURTHER TRAUMA TO FAMILIES AND NDIS PARTICIPANTS.
    WISHING YOU WELL MINISTER SUSAN REYNOLDS ON YOUR NEW PORTFOLIO. YOU HAVE THE MOST JOB NOW OF RECTIFYING AND CORRECTLY INTERPRETING RECOMMENDATIONS AND REPORTS AND LOOKING AT THE PILOTS DATA AS A QUICK GRAB AT PICKING FROM A CROP OF FEEDBACK OR ENGAGING ALL NDIS PARTICIPANTS VIA REAL CONVERSATION WITH STATE, TERRITORY LEADERS, DUSABILITY ADVOCACY GROUPS AND ALSO. SUPPORTING PARTICIPANTS TO ATTEND SOME STATE AND REGIONAL FEEDBACK WORKSHOPS WITH TRANSPORT, CARER, SUPPORT WORKER OR PARENT SUPPORT TO ATTEND AND HAVE A CHANCE TO GIVE REAL FEEDBACK FROM REAL PEOPLE LIVING LIFE UNDER THE CURRENT NDIS SYSTEM THAT STILL NEEDS WORK NOT CULKS, COST CUTTING AND IA’s to prevent or limit inclusion and access to ndis for pwd.
    Kara Gandolfo
    Woman, Mother, Carer
    PWD, Former Frontline Healthcare Professional and now advocate for my Autistic Family, children who need timely supports now to make a difference long term.
    A woman who was always principled by the ethics of ACTIONS SPEAKING LOUDER THAN WORDS in ALL my care of every single human aged 8-100yrs that l cared for professionally.
    Minister Susan Reynolds, l wish you every strength, patience, resilence and fortitude to do the job for the people you now represent of over 100,000 + participants, direct family member, grandparents, aunts, uncles, cousins, potential future friends and social connections, employment connections, all the service providers who would number into the millions in actual real life.
    YOU CAN MAKE A DIFFERENCE.
    WE HOPE YOU DO AND WE WISH YOU EVERY HEALTH.
    Kara and Family

  2. Stephen Prohm 4 months ago
    Reply

    It seems to me that the proposed change to Indedpendant Assessment is like the medical receptionist deliverng the quiz for surgery without consulting your doctor or specialist! Apoligies to medical receptionists who do a great job but they are not qualified to determine surgery options. I understand the need to rein in some costs for the NDIS. I really do. Perhaps one option might be to reduce the administrative burden’s complexity.

  3. Frances 4 months ago
    Reply

    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.

  4. Nathan Pallavicini 4 months ago
    Reply

    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.

  5. Andrew 4 months ago
    Reply

    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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