SUBMISSION TO THE JOINT STANDING COMMITTEE ON

THE NDIS – Capability and Culture of the NDIS November 16 2022

Introduction

This submission is based on my own experiences as an NDIS participant. I believe my eligibility is related to my psychosocial disability and autism is listed as my secondary disability. I use NDIS funding for psychology, a support worker and the plan management provider who pays them. I no longer use support coordination because it’s too hard to find someone suitable. My next plan review is due early 2024 but I will not be cooperating. I see no point in wasting my time speaking with a planner when the NDIS are allowed to ignore our discussion and use algorithms to put me in a box for their own convenience which ignores my individual needs.

As a participant with privilege and education I experience advantage because I have the skills to self-advocate, write complaints and email politicians. Privilege brings the responsibility of speaking up for those who cannot. Anything I do that contributes to positive change within the NDIS/A is of benefit to all participants, not just me.

Thank you for the opportunity to communicate my thoughts and describe my experiences.

Psychosocial disability and the NDIS

I live in Geelong Victoria - the area selected in 2013 for trialling the NDIS. State run mental health support systems were considered fragmented, inefficient and inadequate and the NDIS was sold as a better way of supporting people with psychosocial disability. In 2016, I was encouraged to apply for the NDIS because the community based mental health program that had supported me for three years ceased to exist when all its funding was diverted to the NDIS. This happened all over Australia as the NDIS was rolled out.

Once psychosocial disability was included in the NDIS, the Victorian mental health system dropped the ball. People with mental illness who failed to meet NDIS criteria for psychosocial disability but were not considered sick enough often enough by the mental health system, fell into a no support black hole. An epidemic of illness overwhelmed the mental health system. The 2019/20 Victorian Mental Health Royal Commission recommendations has resulted in increased government funding towards mental health but as most is tagged to programs like Headspace, people over twenty five still get limited support. Minister Shorten is correct in saying that state government departments need to meet their obligations rather than leaving everything to the NDIS. I have no choice but to remain in the NDIS because the Victorian mental health system does not provide me with any on-going support. I cannot exit the NDIS after I turn 65 because the aged care system will not provide the consistent level of support I need.

The NDIS has never handled psychosocial disability well and this must change. They seem confused by their own guidelines and demonstrate no understanding that although invisible and episodic, psychosocial disability involves the same level of serious and permanent impairment that physical, neurological and intellectual disabilities do. The NDIS must learn that psychosocial disability impacts

on all aspects of life and impairment increases with age resulting in significantly higher rates of physical ill-health and a shortened lifespan.

Impact on me:

Having significant trauma from government bodies in the past, it was always going to be difficult for me to engage with and trust the NDIS. Dealing with such an obstructive, unhelpful and incompetent bureaucracy as the NDIS/A has been a toxic and damaging experience for me. It’s no surprise that participants with psychosocial disability struggle to stay engaged with the NDIS. Being female with late diagnosed autism and major depressive disorder means I have a 13 - 15% higher risk of death by suicide. My psychologist has explained this risk in writing to the NDIS/A but negative interactions with employees continues to be the main cause of the mental and physical ill-health, psychological distress and crisis I experience. That’s quite a legacy the NDIS/A have!

The main goal of my 2018 plan was to volunteer. NDIS funded support meant I maintained more consistent health. I managed to volunteer 20+ hours a week for four years in a centre for people experiencing homelessness and addiction. This job was in line with my values, provided social interaction and added structure and meaning to my life. In 2021, interactions with the NDIS/A were so destructive I had to quit. This was a loss for me, the charity and the community of clients I worked with. It was disheartening to have everything I’d worked so hard for erased by the actions of the NDIS/A.

After six months of being unable to do anything except stay at home, I now work six hours a week for two charities helping elderly people care for their pets and diverting rescued food to people in need. I can only contribute to society if I stay well. To stay well I need the support the NDIS funds so interactions with the NDIS/A should support and not destroy the gains I make.

Past history with the NDIS

I met the NDIS access requirements for disability causing serious and permanent impairment and needing support for daily living in March 2016. It took Sarah Henderson MP emailing David Bowen (then CEO of the NDIA) to get my initial planning meeting fourteen months later in May 2017. This experience proved an accurate predictor of the performance level I could expect from the NDIS/A.

Following my first plan review in May 2018, a delegate decided that as I could drive a car and attend appointments I was “too functional” for the NDIS. She laughed and told me she had no intention of reading any reports my practitioners submitted. She cancelled my plan and supports and ordered a review of my eligibility. It wasn’t the review that distressed me. It was the delegate’s attitude, how she spoke to me and that she laughed when I cried. The NDIA employee who conducted the review actually read the reports I’d submitted and quickly restored my eligibility but it took months to get a new plan and the conduct of the delegate considered. The delegate was removed from planning but promoted within the NDIA so obviously being hard-nosed, uncaring and ruthless are prized attributes in that workforce.

Impact on me:

The quick restoration of my eligibility proved the delegate’s decision was unjustified. Connection to past injustices from government bodies triggered my PTSD. I was unable to process why the delegate laughed at my distress and spoke to me in such a cruel and disrespectful manner. I experienced nightmares and sleep walking. I was overwhelmed, hospitalised for acute suicidal crisis

and needed increased psychological support for months, all of which cost Australia far more than my total NDS plan. Arguing my case for months was exhausting. My mental and physical health deteriorated and I experienced debilitating autistic burnout.

Most participants and families report a high level of stress resulting from interaction with the NDIS/A. The impact of stress is significantly higher for those participants with psychosocial disability because they have a raised base line of stress all the time. How NDIS/A employees treat participants with psychosocial disability matters but the NDIS/A have never understood this.

(See previous submission 156 - NDIS Planning 2020)

An incompetent planning meeting in November 2020 initiated a cascade of negative interactions with the NDIS/A. I felt I had no choice but to engage with processes I lacked capacity for to stand up for my right to receive the level of performance and treatment expected from a government department. Ignoring the NDIS/A’s pathetic performance was never an option for me.

(See previous submissions 103.1 2021 and 103 2022 - General Issues Around the Implementation and Performance of the NDIS)

Impact on me:

The NDIS/A still have no process to deal with misconduct of employees and no awareness of the gravity of harm their actions can have on participants. The time taken from my life can’t be replaced. The stress caused my health, well-being and quality of life to tumble down like a Jenga tower. Conversations with mean, provocative, argumentative and obstructive complaints officers resulted in acute suicidal crisis and months of vigilant psychological support. Having no choice but to stop work meant all structure, social interaction and meaning was removed from my life. I withdrew, rarely left home and the only people I saw were my psychologist and support worker. Social isolation caused severe depression. I would defy anyone to go through any protracted process with the NDIS/A and come out without profound and lasting damage.

Summing up, the NDSIA and I have had a long relationship but we will never be friends. The thought of interacting with the NDISA fills me with dread. The distress and anxiety caused by interactions outweighs any gains made by the support their funding provides. I do not respect or trust the NDSA because it’s a cruel and abusive system. I need the NDIS to fund support so I can live my best life but I need them to leave me alone as much as possible.

Lack of trust in the NDIS/A

My distrust in the NDISA is evident in how I responded to this SMS and email I received in August 2022.

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SMS –

“Hi

My name is XXX. I am attempting to contact you from the NDIS for an informal check in. Please text back to this text message with a date and time that would be best to contact you. Regards, XXX”

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**EMAIL -

“Good afternoon\n\nMy name is** redacted **and I am a Participant Support Officer (sic) from the NDIS working in the PCI team. I am attempting to get in contact with you for an Informal (sic) Chat. (sic) As part of our participant service guarantee , (sic) we complete a check in on an informal basis to see how our participants are going.\n\nThe most important part of the PCI process is having a genuine and in depth conversation with our participants to ensure that:\n\n1. You are Happy (sic), Healthy (sic) and Safe. (sic)\n\n2. You know how to use the funding in their (sic) plan.\n\n3. Have a copy of their (sic) plan.\n\n4. You are connected to supports within the community.\n\n5. You are not isolated.\n\nI am just wondering how you are going and if your plan is working well? Are you accessing support services on a regular basis? What supports do you currently have inplace? (sic) Do you have any reasons for concern?\n\nI look forward to your response or if you would like me to give you a call, just respond to this email\n\nWith (sic) your preferred day and time and if you could confirm your mobile number too, (sic) that would be great.

Kind regards“ ……………………………………………………………………………………………………………………………………………………………

I thought it was a scam because I’d never received an SMS from the NDIS and emails are never sent from employees’ personal email accounts and never reveal their surnames. I’d never heard of a PCI team/process or a participant support officer. An informal, genuine chat that was also going to be in depth was confusing, contradictory and suspicious. It was implausible that the NDIS cared if I was happy, healthy, safe and socially connected. It didn’t make sense that an employee hadn’t read my file, accessed my phone number or checked my plan and supports before contacting me. The email contained grammatical errors so … all signs of a scam really! I was anxious and rang the national call centre who assured me it was genuine (total shock!) so I emailed back.

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“Good afternoon** redacted **.

I’ve never had anyone from the NDIS or a LAC ever check in with me in nearly six years so I\nthought your SMS was fake. Sorry about that.

I don’t know what a PCI team or a participant support officer is but I will not be having a chat, informal, genuine, in depth or otherwise unless I have my psychologist with me. I will not be answering any of the questions in your email in writing either sorry.

My psychologist is away at the moment so when she returns I will discuss it with her and let you know our decision.“

**My phone number has not changed but there is a clear directive on my file stating I am not to be cold called and I’d like that to be respected thank you.

I apologise if this response is defensive but I have only had terrible experiences with the NDS and I need to protect myself.

Thank you”

…………………………………………………………………………………………………………… ………………………”

“Good morning

Thanks so much for responding to my email. I totally understand your hesitation to chat with me if you haven’t been contacted on an informal basis before. As a Participant Support Officer (PSO) I contact a check in with our participants if we haven’t heard from them in a while or they haven’t been accessing their plans so it’s usually a quick or long chat about how things are going and if they’re needing any assistance.

I am more than happy to call you back whenever you’re feeling comfortable and can arrange you psychologist to be with you. I’ll leave it up to you and please feel free to email me when you’re ready. I look forward to hearing from you in the future.

Kind regards”

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I found no reference to PCI team/process on the NDIS website. Having no context for why an employee randomly wanted to check in and have a chat about my plan, I was worried that the real intention of the chat was being hidden and engagement would be of no help to me. My psychologist agreed so I emailed back. …………………………………………………………………………………………………………………………………………………………………..

“Dear XXX,

I have decided not to speak with you because it is unclear how it will help me. My decision has nothing to do with you personally.

Checking in with participants is a good idea and may indicate the NDS is finally trying to develop human relationships with participants that are based on trust, respect and kindness. Or it might simply be box ticking for the PSG or a community PR exercise or even a means to cut my funding or remove my eligibility.

I can’t risk any more interactions with the NDS that may compromise my health, well-being or safety. They caused me enough harm last year.

Thank you for trying”

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I never got a response so it was obviously an NDS box ticker/care factor nil contact. I continued to worry about how my refusal to engage would be interpreted and possible consequences. To ease my anxiety, a few weeks ago I rang the NCC. I asked what the PCI acronym represented and what their process involved. After 31 minutes of research, the NCC employee told me PCI didn’t stand for anything and was just the name the team chose. I was speechless. How ridiculous! The PCI team could just as easily have called themselves MAD, GOD, AHA, HEX or ZAP. I asked the NCC employee

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to note on my file that using pretend acronyms to fool/intimidate/confuse participants is not acceptable. She typed something but probably not what I said. This is what the NDIS really is. …………………………………………………………………………………………………………………………………………………………….

Trying to get information or support

Seeking support, help or information from the NDIS/A is like being alone on a blow-up toy in the middle of the Pacific Ocean yelling for help. Every time I’ve tried to get support or information from the NDIS their processes have only set me up to fail and further destroyed my faith and trust in them. In April and May 2021 I went to the NDIS office seeking help, information and support after the NDIA closed my complaint without any investigation or sensible resolution. Following my visits I sent this email to the manager I’d spoken to.

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18 May 2021

Dear ###,

You said I could email you further information. That’s helpful and I appreciate it. I’m not trying to be clever in what I write - I simply say things how they are because I am autistic.

I don’t expect you to understand how the last six months have affected me because you are a neurotypical person but it is not helpful to tell me that the concerns I raised in my complaint are things that have happened in the past and I need to get on with my life and use my NDIS supports. I was getting on with my life until the actions of LAC and the NDIS negatively impacted on me. The mistakes with my review and plans shouldn’t have happened and can’t be brushed under the carpet by the NDIA’s complaints branch because it’s all too hard for them. The positive changes and successes that have occurred in my life over the last two years and all the work I do to manage my disabilities seems to have counted for nothing and been destroyed by the interpersonal trauma I have experienced lately from NDIS employees. You may be lucky enough to be able to move on from distressing events but I can’t and it is invalidating to expect me to.

The NDIS website states, “We’re here to help. You can visit an NDIS office in your area.” and “We believe our frontline staff are the best people to assist you. If you want information about services or are unsure about something, we encourage you to contact your local NDIS office.”

I have the same human rights as everyone working for the NDIS yet both times I’ve come in to the Office for help, my human rights have been abused. People with disability have the right to feel valued and safe and to be treated with dignity and respect. It is abuse when someone treats me badly, neglect if someone is not helping me the way they are supposed to help me and exploitation if someone is taking advantage of me.

It is very disconcerting that each time I come into the office the reception staff automatically press an emergency button to call for back up as if I am a dangerous axe-wielding lunatic. I’m not sure what the office staff think I’m going to do but all I

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want is to be heard, have my questions answered and my complaint taken seriously. I’m a sixty one year old woman struggling to manage lifelong and complex disability as best I can. Yes I’m distressed and angry but they are reasonable responses to what I’ve experienced and how I’ve been treated. The automatic overreaction to treat every participant coming in the door as a dangerous criminal doesn’t exactly radiate a helpful and friendly response. I don’t understand why NDIS employees seem scared. I have far more reason to be scared of NDIS staff because I am outnumbered and you have all the power. It may be confronting for NDIS employees to come face to face with a real live participant rather than being able to keep them at arm’s length which is obviously the preferred approach of the NDIS in general. Clearly the disconnect between the NDIS and participants isn’t working for me which is why I came into the office.

It is not appropriate that everything discussed when I am there is conducted with a roomful of strangers who are all looking at me and listening in. I found this situation embarrassing, humiliating, disrespectful and overwhelming. Obviously my privacy was ignored. I was particularly distressed by the male who came out to reception before you arrived on Wednesday May 12. He was clearly there to intimidate me. He ordered me to get behind the Covid screen (which only covers a few metres of reception and logically is no barrier to Covid at all) simply because he wanted to feel in control. He stood in the corner, arms crossed, glaring at me across the room. Telling me he was speaking to the receptionist was an obvious lie as he was there to watch me. I felt threatened by his attitude and unsafe in his presence which is why I called out his behaviour. I have suffered serious abuse and violence from men throughout my life. I will not stand for physical intimidation from a male employee when I come into a government building for help. This is not acceptable and it would be best if it never happens again.

I feel the NDIS is putting up as many barriers as possible so that I give up because it is all too hard. I do not understand why NDIS employees cannot see what they are doing to people who just like them, want to live their life. Being treated as a worthless human undeserving of NDIS employees’ time and effort has made me feel devalued, dehumanised, disrespected, defeated and worthless and at times destroyed my will to live. How you treat me when I come into your office needs improving. All change has to start somewhere.

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I think my email explains everything. The manager was kind, respectful and did what she could to help. She told me she’d used my email in staff training so hopefully the treatment participants receive in that particular NDIS office has improved. She is one of the five NDIS employees I have had a positive interaction with in six years.

NDIS policy actively discourages direct engagement and interpersonal contact between employees and participants. The NDIS/A distance themselves physically and emotionally from participants and this creates and enforces an impenetrable barrier that is devoid of humanity. This approach is not working and will never work. Like many participants, I prefer and need face to face contact so I will continue going into my local NDIS office if I need help because unless I am seen, they forget I’m a human being.

A hard of hearing friend who is a participant spent six months trying to access the approved funding for his new hearing aids. He is a year 12 maths teacher - a precious and essential worker. Despite telling the NDIS multiple times that it was becoming increasingly difficult to teach without new hearing aids, they fobbed him off for six months. I advised him to go into the local NDIS office like I

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had. We joked about him not wearing his (leased, inadequate and costing a fortune) hearing aids and repeatedly saying to NDS staff, “Sorry I missed that. Excuse me. Pardon. I can’t hear you.” A miracle occurred and his money turned up days later. These sort of mind games the NDLS play are abusive and need to stop.

Phone and written communication with the NDIS

Hundreds of individuals and organisations have described communication failures in the NDLAS/A. The don’t want to be bothered by participants so human to human contact is avoided and impenetrable barriers prevent effective and respectful communication. I understand many people struggle with Services Australia but I find their website information to be helpful in directing me to the exact number to ring for the particular help I need. In contrast, when I have needed help from the NDIS there is no-one to call. I can’t phone anyone who works for the NDISSA. I can’t phone my planner, the delegate, the area leader, my NDIS contact person or the complaints branch. All I can do is call the NDIS National Call Centre. Being obstructed from communicating and seeking help is frustrating, isolating, scary and lonely. Phoning the NCC often doesn’t help because they are extremely limited in what they can do so I only ring when I need to check something that I know will be recorded on my file. NCC staff vary from terrible to fantastic with nothing in between so I quickly make a judgement call, keep talking or thank them, hang up and ring back hoping for someone else.

Apparently all participants have an NDLS contact person but it’s a PR stunt. I’ve given up trying to keep track of who my contact person is as they frequently change without notice. I’m only given their first name. No email address is provided and the only number listed is the national call centre so having a contact person is completely useless. The one time I asked my NDSIS contact person for help, she sent me a link to lodge a complaint with no other message or contact. It’s all a complete sham.

Writing to seek help from the NDISSA is a catalyst for extreme distress. It goes nowhere and to no- one. Written communication from participants initiates generic diarrhoea from the NDIS/A that utilises insurance-based strategies like deny, delay, ignore, whitewash, obstruct, lie, cover up, timidate, dismiss, abuse and divert blame. The more participants try to communicate the harder the NDLAS/A dig in their heels, insist on having the last say and winning the “contest.” Written communication from the NDIS/A lacks honesty, transparency, logic, fairness, integrity, competence, professionalism and common sense. Their website is a bog. Good luck searching for and finding anything that actually helps on it.

Staff employment

A decade of inaction by the previous government has resulted in a chronic shortages in many areas of the Australian workforce. Immediate action must be taken to ensure an adequate and suitable NDLS/A workforce. The NDLS/A may struggle to attract and retain their workforce but that does not mean all applicants should be given employment. Victoria Police and the Australian Defence Forces have checks and balances to ensure people they employ have suitable temperaments and the skill set required to complete the tasks of the job. As employees working with the most vulnerable Australians similar safeguards must be used by the NDISSA.

Offering higher wages will not guarantee a better NDIS/A workforce. Higher wages will attract people who see working for the NDIS/A as easy money resulting is an even more disinterested and non-compassionate workforce with less rapport with people with disability. Applicants for NDIS/A positions need to want to work with people with disability and employment criteria and selection must focus primarily on the ability of applicants to interact safely and respectfully with people who have disability. My experience is that many NDIS/A employees are young, inexperienced and poorly tained. They may feel overworked, stressed, underappreciated and underpaid but none of those factors justify them being incompetent, disrespectful or mean to me. They don’t need to be perfect but they do need to fully understand that I have disability and to be kind and respectful in their interactions which is exactly how the NDIS on-hold recording tells me I must behave.

Right at the bottom of the front page of the NDIS website you can click on Careers and read all about current vacancies, their graduate program and commitment to participants, why people should work for the NDIS, their inclusion and diversity pathways into the agency, career development and learning etc. It is an amazing fairytale! If the NDIS/A actually followed their words and employed people according to this information, life for participants would be much improved.

Expenditure

Ministers from the previous government were completely disinterested and disengaged with participants and only regurgitated NDIS/A spin. Thankfully comments from Minister Shorten and Minister Gallagher about the cost of the NDIS are intelligent, informed, honest and accurate. The NDIS is failing and as vital social commitment it cannot be allowed to fail. The NDIS must support Australians with disability to live their best life but it will need to be different from the original concept. All systems need constant assessment, adjustments and improvements over time. The blow out in expenditure in the NDIS has been caused by a range of complex factors but there’s no doubt it must operate more efficiently and control spending.

1. NDIS participant stigma

Expenditure needs to be addressed because community support is turning against participants and rejecting the NDIS as a waste of money. Many Australians have no experience of disability or the NDIS. The popularist media oversimplification of the main cause of the NDIS cost blowout to be overspending on participant plan budgets is contributing to participant shaming and stigma. I rarely disclose I am an NDIS participant because of reactions I’ve received. With invisible disability and a gold medal for masking, if I disclose I’m a participant on a good day, people do a double take, judging if I really have disability or enough impairment to deserve NDIS funding. I’ve received hurtful comments about how much participants are costing Australia as if my small plan budget is solely responsible. If anyone wants all my NDIS funding but also my psychosocial disability I’m happy to trade places.

2. Misconceptions in original NDIS thinking that led to expenditure issues now.

a) The belief that supporting people with “milder” disability would enable them to catch up, recover and exit the scheme was an ignorant supposition and flawed. Applicants with “milder” disability shouldn’t meet the permanent impairment threshold for eligibility. If the NDIS accepted their eligibility, catching up, recovering or exiting the scheme was never going to be a possibility.

b) Thinking that providing short term investment in participants would lower the long term costs

and increase employment and independence was inaccurate. Most disability is for life and the impairment challenges increase with age whilst independence decreases. People with disability face overwhelming obstacles to employment in spite of how much support they receive or how hard they try. It would be great if the NDIS/A could practise what they preach. As of the 11th of November 2022, under Careers at NDIS on the NDIS website, their jobs list for Affirmative Measure (Disability and Indigenous Only) reads, “There are currently no vacancies available at this time.”

c) The original forecasting for participant numbers was too low. Increasing numbers of people with disability are trying to join the scheme because they need support and there’s nothing else available.

d) The idea that when people turned 65 they would exit the NDIS and get support in the aged care system hasn’t happened and won’t happen until the aged care system receives adequate funding and improves the support they offer to people with disability. Who in their right mind would turn their back on the support they’ve been receiving in order to get nothing from the alternative!

3. NDIS spending on legal fees The lack of trust between participants and the NDIS/A is entirely the fault of the NDIS/A. Their use of automated decision making to determine and cut participant plan budgets and their practice of failing to communicate effectively or explain their decisions is the direct cause of the AAT overwhelm. The money the NDIA spends fighting participants in the AAT is obscene. The NDIA are wasting public money employing external legal firms whose only goal is to make money out of other peoples’ misery. This excessive spending directed against participants is wrong on every level and must stop.

4. Eligibility process The NDIS are responsible for the confusion applicants and practitioners face. The misconception that having disability automatically entitles a person to NDIS support has grown exponentially due to the confusion created by the NDIS and their inconsistent decision making in regard to eligibility. Obviously most people with disability would benefit from NDIS support but it isn’t feasible or reasonable to do that. All disabilities come with a range of impairment and there needs to be more acceptance that not all applicants meet the NDIS criteria. The focus must be on the applicant’s level of impairment and how this impacts on their life. Funding must be directed to those whose disability impacts so significantly that NDIS support is essential to living and not just an added bonus. Disability diagnosis must be provided by the practitioner most qualified in that disability. Practitioners are bound by codes of conduct and their diagnoses must be respected. After diagnosis, practitioners need to ensure applicants meet the threshold required for permanent impairment and impact on daily living before advising or assisting them to apply for the NDIS. Trust between practitioners and the NDIS needs to be established so that an applicant’s eligibility is objectively based on the facts provided by the applicant’s practitioners. ce once eligibility is established, it is not ethical, reasonable or efficient for the NDIS to continue to challenge practitioner opinion and harass participants about this matter. The eligibility process and criteria need to be rewritten so they are more robust, precise and clear. Age and residency criteria are clear but the permanent impairment and impact on daily living are vague and too open to interpretation by applicants, practitioners and the NDIS. The NDIS’s failure to assess eligibility consistently and clearly communicate the reasons for their decisions has resulted in increasing numbers of applicants fighting negative decisions. Applicants who do not meet the

criteria believe that paying for more assessments and submitting additional documentation will

eventually prove their eligibility. They cannot be allowed to continue fighting the decision indefinitely. Alternative supports need to be better funded and available for them to access. Other government systems like health, education, TAC, aged care and Workcover must better support people with disability who do not qualify for the NDIS.

5. Service provider charges

Media reports that a major cause of NDIS costs is participants have uncapped financial support that is ratcheted up every year. This is untrue. In an underhand manner, the NDIS have been using algorithms since 2019 to justify funding cuts to an increasing number of participant plans. My plan budget for 2018/20 was larger than my current 2021/24 plan even though the price of support services over this time have and will continue to increase. I questioned the cut when I received my plan and was told if I run out of money just ask for more. Like it’s that simple isn’t it! There are only so many fights I can manage.

What has “ratcheted up” are the prices greedy unregulated service providers charge. It’s a feeding frenzy with the ten largest providers receiving $417 million of NDIS money in the June quarter of this year. Many people are making lots of money out of the NDIS and it’s nothing to do with participant budgets or supports being uncapped and ratchetted up. Price gouging is endemic in Australia and the NDIS service provider industry is no exception. Most service businesses in Australia vary their prices according to whether the client is a regular person, is on the DSP or aged pension, has NDIS, TAC or Workcover funding, a Medicare plan or private health insurance. There is no attempt to hide it and most tell me up front which option will save me the most money. It’s been around for years but has only become evident because of scrutiny of the NDIS. There must be recognition of the fact that this business practice is responsible for covertly driving up prices and is a major contributing factor to increased costs of not just the NDIS but also Workcover and TAC.

6. Early intervention for autism

Funding for young participants with autism has come under increased scrutiny. As a retired educator and a late diagnosed autistic woman I believe in early intervention for autism. If times were different and my autism was diagnosed, accepted and supported from an early age there is no doubt I would have been better equipped to handle life’s challenges and may never have developed psychosocial disability. I’m not convinced the NDIS is best placed to fund early intervention for autism but there’s nothing else now. Child health and education systems used to take more responsibility for early intervention support but the funding, skilled workforce and programs have been eroded over time as everything was put into the NDIS.

7. Rorts

The NDIS is a complex system with flaws and many service providers and some participants will take advantage of those flaws. Most media reporting on participant “rorts” is based on ignorance of what support for people with disability looks like. I attend a weekly tai chi class through University of the Third Age. People who do not understand the importance of exercise and social connection for someone with autism and psychosocial disability might see that as a rort. The NDIS are totally responsible for my plan budget and there are checks and balances on what I spend it on. My 2022 yearly U3A fee of $30 was refused by my plan manager. An overzealous employee told me paying for a university course did not meet NDIS spending parameters. As university fees cost slightly more than $30 a year and plan management had paid the fee the previous two years, I was frustrated especially when he would not listen to me. Going into the office in person to resolve the issue was

Policies, processes and service commitments

I found the process of applying for the Disability Support Pension this year to be time consuming and stressful but far superior in every way possible to any NDIS/A process. The Services Australia application process was clear and fair. They did exactly what they said they would when they said they would. No documentation was lost and the employees who spoke to me had read and were familiar with the documentation I’d provided. They were polite and respectful and were obviously trained in how to interact with people with disability.

NDIS/A policies, processes and service commitments seem reasonable per se but the fundamental issue is that employees (right up to senior management) consistently fail to follow them. There is no connection between the NDIS/A’s words and what actually happens. My 2020 plan review was nothing like the website information describing the review and planning process. When I submitted a written complaint in 2021 to the NDIA complaints branch, at no time did they follow any of the Charter’s principles and service standards or the complaints process described on their website.

What is the NDIS doing well?

NDIS funding provides the support that keeps me alive, out of hospital and well enough to volunteer and look after myself. There is no doubt without it I’d either be dead or costing Australia far more. I was briefly sucked into the great Australian myth that the NDIS is there to help and support me. As the NDIS/A have failed their basic responsibilities, abused my rights and made my life worse I don’t think they’re doing anything well except lying, avoiding accountability and covering their own arses.

What could the NDIS do better?

Everything really. I want government to eradicate the abusive culture within the NDIS/A workforce, ban the harmful practices they currently use, force them to follow their Charter and honour their responsibilities towards me as a person with disability.

RECOMMENDATIONS

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See my previous submissions:

• NDIS Planning Submission 156 (2020)

• General Issues Around the Implementation and Performance of the NDIS Submissions 103.1 (2021) and 103 (2022)

Recommendation 1: Government response

The most important recommendation I’d make to government is they do something. The Labour government has initiated some change and this must continue because a lot needs to change. If they give up and continue the procrastination of the previous decade, the NDIS is lost.

The previous government’s decision to keep the NDIS in a holding pattern for a decade has caused immense harm to participants and their families. Thousands of individuals and organisations pointed out problems with the NDIS from the beginning yet the previous government obstinately refused to pay attention or do anything. NDIA decision makers were given freedom to do anything even if it damaged the lives of participants. The shelving of independent assessments was a win for disability rights but the previous minister conceded because she knew she couldn’t win and not because she knew the process would cause harm. When the final report from the Disability Royal Commission is released, Australians will be wringing their hands pretending they didn’t how bad it is for people with disability. Oh yes they did!

Hopefully the independent review into the NDIS will be a huge catalyst for change but there is an element of closing the stable door after the horse has bolted. Giving the NDIS/A free rein for a decade has enabled them to do anything they want without any oversight or protection for participants. As such an important national scheme there should have been an independent review body working alongside the NDIS/A right from the beginning, overseeing implementation, performance, administration and expenditure and tweaking things as necessary to make it better. And don’t tell me the Commonwealth Ombudsman did that because they didn’t.

Recommendation 2: Re-education of the NDIS/A to ensure the concept of disability is fully

grasped and placed front and centre of every decision they make, every word they write and say and every action they take.

There must be significant re-education to ensure the NDIS/A understand and accept they are the government department and their job is to support people with disability. The core understanding that every participant is a vulnerable person with disability must be factored into every NDIS/A policy and interaction.

Many NDIS employees I’ve interacted with had a concept of disability based on personal experience or past training however the NDIA employees had none. NDIA employees are public servants, probably happiest if they never deal with participants and can keep everything neatly organised in colour coded boxes on a shelf. With no knowledge, training, skills or experience in relating to people with disability it’s not surprisingly these are the employees who have caused me the most harm. Senior NDIA management would be more skilful leaders if they spent time with participants learning first-hand of the difficulties they face in their daily lives and how NDIS/A processes and decisions impact on them.

Lots more external professional training around:

• disability and trauma
• how to treat participants with respect, kindness and compassion
• how to work with participants in a supportive, empowering and collaborative manner
• what listening, transparency, responsiveness and respect actually look like
• how to act professionally, take responsibility for their actions, apologise, acknowledge errors and make necessary improvements
• the benefits of trust, respect and working collaboratively with professional practitioners
• reading, understanding and acting according to the content and meaning of the words contained on their website and in the Participant Service Charter.

Recommendation 3: Eliminate the systemic abusive culture within the NDIS/A workforce.

Australia is a signatory of the United Nations Convention on the Rights of Persons with Disability and government is failing their responsibility by not ensuring NDIS employees are respecting my rights.

a) Government must insist the NDIS/A immediately cease using algorithmic technologies and automated decision making with participants.

It was the previous government and minister who approved this human rights abuse but the Labor government needs to end it. I sent a submission to the committee on October 27 2022 that included what I’d sent to the Disability Royal Commission the same day. Obviously the previous government learnt nothing from Centrelink’s robodebt disaster because someone approved the NDIS/A using similar algorithmic technology on participants behind their backs and without their knowledge.

The NDIS’s use of this technology is right up there with independent assessments. It is inhumane, injust and dehumanising. The NDIS playing God, reducing my individual humanity to a data entry in a computer system just to save their poor wee brains from thinking is obscene. Factoring in discriminatory information like my age, disability and what the NDIS think is my level of functioning into a computer program to lump me with other “like” people into a pigeonhole entirely for the convenience of a “system” is profoundly offensive. See here’s the thing! I’ve never met anyone like me because there is no-one like me. Government continuing to allow the NDIS/A’s to use practices like this that are known to cause harm is structural injustice.

b) AAT appeals

Naturally participants get angry about unexplained decisions and random changes made to the quality of their lives. The completely ineffectual NDIS internal review process forces participants to the AAT where the power imbalance between participants and NDIA lawyers is unethical. The stress, trauma and harm caused to participants by dragging appeals out for years and the overzealous approach used by NDIA lawyers to challenge legitimate appeals for no obvious purpose or gain is cruel and inhumane and needs to cease immediately.

Participant Service Charter

“We follow the requirements of the Commonwealth’s Model Litigant obligations. Further information can be found under Appendix B of the Legal Services Directions 2017. We may appeal a decision of the AAT. We will promptly implement the final decision of the tribunal or court.”

Lawyers and advocates acting for participants in the AAT have stated the adversarial and combative approach NDIA lawyers’ use does not meet the model litigant legal requirement so why isn’t the government challenging and stopping the NDIA’s conduct in the AAT?

c) Government must ensure the NDIS/A workplace culture reflects their responsibilities under the United Nations Convention on the Rights of Persons with Disability

Government must unequivocally enforce that the combative, aggressive, dispassionate and uncaring interpersonal approach currently used by the NDIS/A is not acceptable for people with disability. Employees who are found to be incapable of adjusting their attitude should not work in the NDIS/A.

The NDIS/A have an entrenched belief system that participants have less worth than employees and there is a pervasive “us and them” mentality. My 2020/22 interactions with the NDIA complaints branch clearly demonstrated they were only concerned with protecting their system and employees at the expense of my safety and well-being because I was viewed as a human of less worth. The defence protocol used by the complaints branch was argumentative, adversarial, emotionally distanced and dismissive and in no way reflected any of the information in the Participant Service Charter or in the complaints process described on their website. Two complaints officers were so arrogant, entitled and confident about their own importance, they did and said what they liked to me. Their tone was condescending and their actions were mean, abusive and obstructive. My objections about their conduct were smoothed away by management giving the green light for further misconduct. No other workplace would accept such conduct and it must be stopped by government.

Recommendation 4: The NDIS/A must follow their principles, processes and service standards.

NDIS/A must follow their processes and service standards and employees must treat participants according to the principles described in the Participant Service Charter. When they fail to do this there should be effective recourse to hold them accountable. Government should not tolerate the NDIS/A’s failure to follow due process or the abuse of participants.

Recommendation 5: Regulation of all service providers.

The NDIS has morphed into an all or nothing approach to service providers. They expect some service providers to jump through onerous yearly hoops to obtain and maintain registration whilst simultaneously allowing a feeding frenzy of completely unregulated providers who present a real danger to participants.

According to the NDIS, I am responsible for conducting my own checks and balances of any unregulated service providers I employ. It is my responsibility to ensure the service providers I engage are not part of an organised crime gang. I need to find out if the support worker who seems perfect is actually conning me. They might have lied to me and have a criminal record, be on the sex offender register and have no mental health training. Basically the person with disability and

serious impairment needs to do all the regulating and protect themselves from dodgy service providers. Safety is a right I have under the United Nations Convention on the Rights of Persons with Disability. Failing to regulate all service providers is not protecting my right to safety. It is the NDIS’s responsibility to perform safety checks not mine. As that’s the terrific system we have, I’m not prepared to take the risk of employing someone who might harm me so it’s safer to go without.